House of Commons
Health Committee
NHS Continuing Care
Sixth Report of Session 2004–05
Volume II
Oral and written evidence
Ordered by The House of Commons
to be printed 5 April 2005
HC 399-II
Published on 3 May 2005
by authority of the House of Commons
London: The Stationery Office Limited
£16.50
The Health Committee
The Health Committee is appointed by the House of Commons to examine the
expenditure, administration, and policy of the Department of Health and its
associated bodies.
Current membership
Mr David Hinchliffe MP (Labour, Wakefield) (Chairman)
Mr David Amess MP (Conservative, Southend West)
John Austin MP (Labour, Erith and Thamesmead)
Mr Keith Bradley MP (Labour, Manchester Withington)
Simon Burns MP (Conservative, Chelmsford West)
Mrs Patsy Calton MP (Liberal Democrat, Cheadle)
Jim Dowd MP (Labour, Lewisham West)
Mr Jon Owen Jones MP (Labour, Cardiff Central)
Siobhain McDonagh MP (Labour, Mitcham and Morden)
Dr Doug Naysmith MP (Labour, Bristol North West)
Dr Richard Taylor MP (Independent, Wyre Forest)
Powers
The Committee is one of the departmental select committees, the powers of
which are set out in House of Commons Standing Orders, principally in SO No
152. These are available on the Internet via www.parliament.uk.
Publications
The Reports and evidence of the Committee are published by The Stationery
Office by Order of the House. All publications of the Committee (including press
notices) are on the Internet at
www.parliament.uk/parliamentary_committees/health_committee.cfm
A list of Reports of the Committee in the present Parliament is at the back of this
volume.
Committee staff
The current staff of the Committee are Dr David Harrison (Clerk), Keith Neary
(Second Clerk), Laura Hilder (Committee Specialist), Christine Kirkpatrick
(Committee Specialist), Frank McShane (Committee Assistant), Mr Darren
Hackett, (Committee Assistant), and Rowena Macdonald (Secretary).
Contacts
All correspondence should be addressed to the Clerk of the Health Committee,
House of Commons, 7 Millbank, London SW1P 3JA. The telephone number for
general enquiries is 020 7219 6182. The Committee’s email address is
[email protected].
Footnotes
In the footnotes of this Report, references to oral evidence are indicated by ‘Q’
followed by the question number. Written evidence is cited by reference to
Volume II of this Report, in the form ‘Ev’ followed by the page number.
List of written evidence
Local Government Association and Association of Directors of Social Services (CC 30)
Ev 1
Age Concern (CC 29)
Ev 17
Alzheimer’s Society (CC 26)
Ev 28
Citizens Advice (CC 15)
Ev 36
Royal College of Nursing (CC 21)
Ev 47
English Community Care Association (CC 4)
Ev 52
British Geriatrics Society (CC 19)
Ev 53
Office of Parliamentary and Health Service Ombudsman
(CC 23, 23A, 23B, 23C)
Ev 64, 94, 96, 98
Department of Health (CC 9, 9A)
Ev 76, 92
Paul Overton (CC 1)
Ev 99
Southampton City Council
Ev 99
Progressive Supranuclear Palsy [PSP-Europe] Association (CC 6)
Ev 101
NHFA (CC 8)
Ev 104
Enfield Disability Association (CC 10)
Ev 105
Royal College of Physicians of Edinburgh (CC 11)
Ev 106
Hampshire Social Services (CC 12)
Ev 108
BUPA (CC 13)
Ev 111
NHS Confederation (CC 14)
Ev 113
Association for Children with Life-threatening or Terminal Conditions (CC 16)
Ev 114
Solicitors for the Elderly (CC 17)
Ev 116
Mr Andrew Shaw (CC 18)
Ev 118
Continence Foundation (CC 20)
Ev 119
Motor Neurone Disease Association (CC 22)
Ev 119
Parkinson’s Disease Society (CC 24)
Ev 121
Relatives and Residents Association (CC 25)
Ev 123
Help the Aged (CC 28)
Ev 124
Help the Hospices (CC 31)
Ev 129
Mackintosh Duncan Solicitiors (CC 32)
Ev 133
Continuing Care Conference (CC 33)
Ev 136
The Law Society (CC 35)
Ev 138
Ms Marion Shoard (CC 36)
Ev 144
Royal College of Physicians (CC 37)
Ev 147
Commission for Social Care Inspection (CC 38)
Ev 147
List of unprinted written evidence
Additional papers have been received from the following and have been reported to the
House but to save printing costs they have not been printed and copies have been placed
in the House of Commons library where they may be inspected by members. Other copies
are in the Record Office, House of Lords and are available to the public for inspection.
Requests for inspection should be addressed to the Record Office, House of Lords, London
SW1. (Tel 020 7219 3074) hours of inspection are from 9:30am to 5:00pm on Mondays to
Fridays.
Elizabeth Balsom (CC 2)
Gay Lee (CC 5)
Jane Williams (CC 7)
Pamela Coughlan (CC 27)
London Borough of Richmond Upon Thames (CC 34)
Ruth Hudsom (CC 39)
Fiona Burt (CC 40)
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Oral evidence
Taken before the Health Committee
on Thursday 10 March 2005
Members present:
Mr David HinchliVe, in the Chair
Mr David Amess
John Austin
Mr Keith Bradley
Mr Simon Burns
Jim Dowd
Dr Doug Naysmith
Dr Richard Taylor
Memorandum submitted by The Local Government Association (LGA) and the Association of Directors
of Social Services (ADSS) (CC 30)
The Local Government Association (LGA) represents over 400 local authorities in England and Wales
and exists to promote better local government, enabling local people to shape a distinctive and better future
for their communities. It aims to put local councils at the heart of the drive for better public services, working
with the Government to secure that objective.
The Association of Directors of Social Services (ADSS) represents the 187 Directors of Social Services in
England, Wales and Northern Ireland. Directors of Social Services are responsible through the activities of
their departments for the well-being, protection and care of vulnerable people including older people, people
with disabilities, people with mental health problems and children in need and their families.
The purpose in collaborating to make this submission is to set out key issues for the local government
community in the development of a national framework for NHS continuing care which resolves previous
and current diYculties.
Introduction and Local Government/Social Care Perspective
The LGA and ADSS welcome the intention to establish a national and consistent approach to fully
funded NHS continuing care. The absence of clear guidance; diVerential approaches over time and in
diVerent health organisations and health/social care communities is and has been problematic to health and
social care organisations (including the independent sector), their workforce and, most significantly to
communities and individuals needing and relying upon NHS services critical to their health and wellbeing.
We are concerned to ensure however that the move to national criteria should not deliver a more restricted
entitlement to continuing NHS care overall, and that it should draw upon those existing arrangements in
SHA’s around the country that best address the issues we outline below.
Our submission sets out what we believe to be continuing diYculties caused by lack of clear guidance;
issues that we believe need to be addressed in establishing a national and consistent approach and a number
of specific examples of continuing diYculty. We would be pleased to explore these issues further in oral
evidence to the committee.
1. It is evident that lack of clear guidance has resulted in diVerential criteria and a range of interpretations
that have resulted in lack of transparency and a lack of fairness. The findings of the ombudsman set out
concerns that:
— Central guidance and support had not provided a secure foundation to enable a fair and
transparent system of eligibility for funding for long-term care.
— What guidance has been available has been misinterpreted and misapplied by some health
authorities when developing and reviewing their own criteria.
— There have been further diYculties in the application of local criteria to individuals.
— The eVect of this has been to cause injustice and hardship to some people, both in relation to the
nature of the services they receive and in terms of what they pay for them.
— Where the person was to be supported even partly by the Local Authority (LA), the LA will have
suVered financially, with an associated impact on ability to meet others’ needs.
— The experience of local authorities in many areas underwrites these concerns. Additionally we
would add to issues that need to be addressed in a new and consistent approach:
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— Much of the guidance that has been issued since the early 1990’s has been directed at the NHS,
albeit with requirements that local authorities are engaged and “Sign up” to criteria within
the area. The experience of local authorities in a number of places indicates that this had not
happened. This will have caused or compounded diYculties in some areas.
— Narrow interpretations of eligibility for continuing NHS care have resulted in injustice and
hardship for individuals, but have also resulted in shifts in responsibility—both in the
provision of care and its funding—from the NHS to LA funded social care in a number of
places. Not only has an individual’s entitlement to “Free” NHS care been compromised by
local processes, local resources intended for social care services will have been used to
subsidise health care services.
— Narrow interpretations have tended to centre on definitions of what care is “complex or
intensive”, rather than consideration of the overall health and wellbeing of the individual and
his/her circumstances. This is inappropriate and can lead to individual decisions that are
diYcult to understand.
— Considerable resource has also been tied up in arguments both about organisational
responsibilities and individual entitlements. This is not a good or eVective use of local
resources or of taxpayer’s money.
— Organisational diYculties have meant that processes have too often been about safeguarding
against legal action; despite this it is not clear that the position is suYciently resolved not to
have to revisit the issues further at some point in the future.
— Criteria that have been established on the basis of financial risk to NHS organisations have
meant that determining continuing care has become an issue of resource management rather
than individual status or entitlement. This is inappropriate, unfair to individuals but has also
impacted upon providers of service—in particular where health care needs have not been
adequately funded or otherwise resourced.
— Additionally, there is evidence that funding diYculties in SHA’s across many parts of the
country have determined interpretations of NHS Continuing Care eligibility. Restrictive
approaches to eligibility by the NHS have created instances where Council’s are, in strict legal
interpretation, probably exceeding their powers by funding individual’s who ought to be
entitled to NHS Continuing Care. As noted above, a consequence of LA funding is that the
individual is subject to means testing and possible payment, so there is a likelihood of
injustice.
— Although much progress has been made in the development of integrated health and social
care services—both in respect of pooled budget arrangements and use of other Health Act
flexibilities—uncertainties about the “boundary” between health and social care have, we
believe, inhibited the development of community based, “joined up” and personalised
services.
— The focus that has inappropriately been given to “bed based” continuing care services—
sometimes also time limited services (as in the case of palliative care)—has had the eVect of
skewing the development of local markets.
2. In summary, the lack of clear guidance has given rise to inconsistent and misapplied criteria, has been
unfair to individuals; unfair to local communities and taxpayers; unfair to organisations and their
workforces—local authority and NHS—and unfair to local providers of care.
Principles to a New Approach
3. Key to the establishment of a new national approach that is well understood and which delivers
consistency, equity and fairness will be to ensure that all stakeholders are involved in its development.
Although the minister indicates that the Department will work with the SHA’s to build upon the work done
to date, it is clear that to meet the requirements of modernised health priorities it is essential that all of the
health and social care community is engaged.
4. A new framework does not just need to be easier to understand. It needs to be transparent and
demonstrably fair to all those involved:
— To individuals receiving timely, appropriate and personalised services.
— To organisations with clear responsibilities and accountability to local communities with a
workforce clear about expectations upon them.
— To local communities confident that value for money is achieved through good, responsive
eVective and eYcient services.
— For local providers delivering services to clear commissioning intentions and funding
arrangements.
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5. The priorities for the NHS and social care as set out in the NHS Plan, National Priorities Guidance
and their respective updates indicate a determination to achieve high quality personalised care, an emphasis
on support to people with long term conditions achieving healthy lives and a healthier, fitter population.
The vision as expressed in the NHS Improvement Plan, Putting People at the Heart of Public Services is:
“One where the founding principles underlying the NHS are given modern meaning and relevance in
the context of people’s increasing ambitions and expectations of their public services. An NHS which
is fair to all of us and personal to each of us by oVering everyone the same access to, and the power
to choose from, a wide range of services of high quality, based on clinical need, not ability to pay”.
6. We are pleased to endorse this vision. In order to ensure that it is secured there needs to be:
— Transparency about what services are required and how the necessary service shifts will be
resourced and funded.
— Clarity about what care will be free at point of delivery; what care will attract a charge or
contribution from users; what “self funders” might expect by way of support from the NHS in
whatever setting they may find themselves.
7. The context for a national approach to continuing care, therefore, will need to take account of a
developing and modernised service and be forward rather than backward looking.
8. In particular it will need to take account of increasingly integrated health and social care services, and
of services provided at home rather than in a hospital or long term care bed.
9. Key principles will therefore include:
— Good and publicly available NHS information to patients/users and their carers about:
— entitlement to Continuing Care;
— the decision making process, and ability to contest decisions; and
— information on choice, including options to receive Continuing Care at home.
— Entitlement to NHS Continuing Care should be based on an individual’s overall condition/set of
needs rather than in relation to the skill set required of the care provider’s staV. In other words
eligibility decisions should be based on the situation of the individual in need irrespective of
whether all of the care will be subsequently delivered by a “skilled” medical practitioner or not.
— A person’s needs ought not to be divided into personal and nursing needs, and only the nursing
ones counted, not only because there is no such distinction in statute but also because the law laid
down in Coughlan and the Ombudsman’s approach has been that personal care needs derived
from an illness or injury are properly the concern of the NHS if the level of the overall need is such
as to trigger entitlement. That is to say, the question whether the service counts as a nursing service
in the opinion of professionals, or as something that needs to be done by a professionally qualified
nurse, as RNCC under section 49 Health and Social Care Act, should not be determinative of a
person’s funding status.
— A person’s overall needs at the particular moment in time being the deciding factor, entitlement
cannot be based on time-limiting approaches such as how long care will need to be provided, eg
how long a person is expected to live.
— Access to fully funded NHS Continuing Care must better incorporate the care needs of individuals
in the later stages of long-term neurological and other progressive conditions and must be
equitable between all those with similar needs irrespective of the nature of their diagnosed
condition.
— If an individual is judged as entitled to fully funded NHS Continuing Care this should be provided
in its totality by the NHS in a community setting, if it would otherwise have been provided in its
totality in an NHS funded care home or hospital setting.
— “Challenging behaviour”, whether in relation to mental ill-health, dementia, cognitive
impairment, learning disability etc must be included as a key factor in the criteria for entitlement
to continuing care and applied consistently irrespective the particular “user group” to whom it
relates.
10. The ability to receive care for complex and long-term health and social care needs is as important as
receiving good hospital care when it is needed. The availability of good community services is not just about
developing alternatives to hospital, it is about enabling independence, choice and control over life and
lifestyle and is about helping people to care for themselves wherever possible. In order to assist this it is
essential that front-line workers are clear about their roles and responsibilities, about the pattern of service
that might be available and/or how this might assist people to take more active part in their own care. It is
also essential to ensure that the funding arrangements for modernised health and social care services—
including care that is self managed—are transparent.
11. The importance of developing rehabilitation and recovery services is a crucial priority in order to
promote independence, enable choice and control and to ensure that people can receive services in their own
homes wherever possible. If, with the assistance of rehabilitation, respite care and other community services
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a person can be supported to live in the community with a lessened need for inpatient care, then resources
should be devoted to that end. Clarity about available resource is essential to commissioning an appropriate
range of services and for potential providers to plan realistically for delivery.
12. A new approach, therefore, needs to take account of innovative and person centred means of
delivering services. The development of Direct Payments in the delivery of social care service and support
needs to extend to the delivery of NHS services. If assessment of need determines eligibility to continuing
care, how services are delivered or who delivers them should be determined jointly between the patient/user
and their professional/clinical advisors.
13. Similarly, the availability of community services which can provide extensive care at home are critical
to ensure that people do not stay longer than necessary in hospital or similar long term care setting. It is
equally essential to ensure that people recovering from acute episodes of in patient care are discharged from
hospital appropriately in order to reach all potential for recovery and/or to regain confidence. Premature
discharge from hospital without good community based services will lead to poorer experiences for patients,
increased levels of readmission and potentially greater costs to the public purse.
Long Term Conditions
14. The vision set out in the NHS Plan and priorities guidance indicates a provision of health care services
that is not simply about (as has been the case) a focus on acute and emergency need, but rather also includes
long term conditions and appropriate care and support.
15. The NHS has (unfortunately) increasingly moved towards a greater focus on interventionist episodic
treatment and rehabilitation, and consequently away from the provision of ongoing long term care.
Therefore people with long term and progressive conditions have not been viewed as the responsibility of
the NHS, even when their condition has deteriorated very significantly. This has been compounded by wide
variation in the application of criteria for fully-funded NHS Continuing Care which means that many
families struggle to support individuals in the end stages of long term progressive illness with help only from
means tested or self-funded social care.
16. Such diVerential approaches to various health conditions have been apparent, seemingly related to
how far the NHS has seen itself as suited to “intervene” regarding treatment or rehabilitation over time. So
for example with cancer, during later stages of illness, an individual may, albeit over a short period of time,
receive free NHS funded care that meets all or most of their requirements for care and support. The care
needs of an individual during the later stages of long-term neurological conditions will often be similar or
greater than those of cancer suVerer nearing death, but are often not viewed as entitled to the same totality
of NHS funded support; this is not least because they may need such care over much longer periods of time,
and may not have recently been actively receiving treatment or rehabilitative input.
17. Local “NHS Continuing Care” assessment must take account of the particular needs of people with
long term conditions (eg including physical impairment, communication, cognitive and behavioural
problems). Health service providers will need to ensure that access to fully funded NHS Continuing Care
is equitable, for example, between all those with long term and progressive conditions and that a person’s
overall needs are the deciding factor.
18. This shift of emphasis will also require a shift in understanding of the respective roles, responsibilities
and accountabilities of people providing health and social care support and the skill base of the workforce.
19. The long term nature of many neurological conditions means that people often require a much wider
range of support, including all aspects of continuing care (physical, mental, social, spiritual), residential,
respite and terminal care at appropriate times over a much longer time period than provided by traditional
palliative care teams. There are only a small number of services oVering comprehensive, advanced end-oflife care for people with long term neurological conditions (although this is often considered to be outside
NHS Continuing Care and is therefore chargeable). Additionally, services to support people within their
own home or locality are significantly lacking, despite the fact that most people would prefer to die at home.
Other areas
20. It is clear that funding for state supported nursing care in nursing homes transferred from Local
Authorities to the NHS on introduction of the “Free nursing” arrangements in April 2003 (See PSS Funding
Letter LASSL(2002)11)). A similar principle should apply where responsibilities for services move from the
NHS to social care systems both to enable best deployment of the available resource, but also to ensure that
what is provided free and what is charged for are clear to people using and relying upon services. It is not
satisfactory for this to be determined on the basis of who delivers care rather than what care is being
delivered and to meet what needs.
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Examples of specific diYculties
21. Confusion about eligibility for continuing care and the “Free nursing” assessment.
— There is confusion over levels of need as the RNCC tool gives examples of need which are far
higher levels of need than Pamela Coughlan and her fellow residents (described by Court of Appeal
as well over the boundary into at least some NHS responsibility) and yet, by definition, the RNCC
Tool and High Band Nursing care is only relevant as a level of need below fully funded NHS
continuing care.
— A clear distinction must be made between top band RNCC and entitlement to NHS Continuing
Care—the tendency identified by the Ombudsman for NHS staV to not properly consider an
individual’s entitlement to continuing care, before deciding on their RNCC banding means that
they will not be properly assessing the totality of the individual’s care needs. This is of continuing
concern. There is also a need for ongoing review of patients in nursing homes with regard to their
entitlement to continuing care, particularly once they are on the top band of RNCC.
— There are real concerns in some places about the quality of nursing assessment that contributes to
the multi-disciplinary assessment. This is critical as it can aVect whether someone receives
continuing care or whether they are placed in residential or nursing care. Although it is
predominantly a training and application issue the vagueness of the eligibility criteria is
fundamental to how professionals view, interpret and implement the policy.
— The most telling area for misapplication of the criteria is the “EMI” group. Many service users
and their carers are confused when reassessments move them oV continuing care and into Social
Services responsibility even though there appears to be little change in the circumstances of the
person assessed—loved ones still see them as confused and dependent missing the subtlety of a
change in nursing input.
22. Direct Payments—for someone in receipt of Direct Payments a change of needs which makes them
eligible for fully funded NHS continuing care means they are no longer entitled to Direct Payments. As the
Law stands the NHS could have responsibility to meet the needs of that individual but the NHS cannot do
so via Direct Payments The NHS should be in a position to provide NHS Direct Payments as part of their
choice agenda.
23. Equipment—There is lack of clarity as to the provision of equipment for NHS continuing Care
patients. There should be more clarity as to what can/should be provided within any national guidance/
eligibility.
24. Appeals Process—The Appeals process is not suYciently transparent for users and carers. Users can
only challenge decisions regarding the process or application of continuing care eligibility rather than the
decision itself.
25. Relevance to section 117 clients receiving aftercare under the Mental Health Act: currently section
117 aftercare is a joint duty and the courts have suggested that this implicitly authorises cross funding, which
can only mean health and social care jointly purchasing whatever is seen to be necessary as aftercare. Noone knows whether this approach means that s117 status for released ex detained patients “ousts” the right
of a client to full 100% NHS continuing care status, or whether that status eVectively means that the very
most needy patients leaving hospital from under section won’t in fact need any s117 aftercare, it being
funded by NHS continuing care . . . Some SHAs treat section 117 patients as entitled, and others do not.
26. The law on which PCT is the responsible commissioner was supposedly going to be changed to enable
the originating PCT to continue to fund truly shared care or specialist packages for clients who need to move
from one area to another. Until this is done, no LA is able to make plans for people needing to move out
of area, because no LA can expect to know every single other PCT’s continuing care criteria or arrangements
for shared care.
27. Children with very extensive health related needs—the issues are as follows:
— do special education duties under the Education Acts and the social services functions under the
Children Act, towards children in need, children accommodated and children in care in either
children’s homes or foster placements, operate to relieve the NHS of its normal obligations of
continuing health care to the most needy? Or do NHS functions oust the obligations under those
Acts where the child in question has health care issues which must logically take precedence over
their educational and daily welfare diYculties?
— The National Assistance Act makes it clear for adults that the NHS legislation and policy guidance
as to what should be provided under the NHS, ousts any power for Local Authorities to provide
an equivalent to those services instead. There is no similar exclusion in the Education or children’s
legislation, in relation to the interface with the health legislation. Some SHAs regard a looked after
child as one whose accommodation and personal care needs in a specialist setting should fall to
the relevant LA, rather than being an incident of providing free NHS care to the child.
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— Children’s home proprietors, foster and respite carers cannot reasonably be expected to undertake
the same levels of “nursing type” input in relation to sick children as a natural parent might be
prepared to put in—for reasons of liability if nothing else. Yet many SHA/PCTs take the view that
if a parent has been doing intimate care and then cannot for some reason, it should be a LA
responsibility to pick up that care. Our position is that if the task had to be trained by the district
nurse, it must inevitably be seen as an NHS function.
Witnesses: Ms Elaine McHale, Director, Social Services and Health, Wakefield Metropolitan District
Council, Ms Cath Attlee, Director, Commissioning and Modernisation, Hounslow PCT, Ms Yvonne Cox,
Chief Executive, Oxfordshire Learning Disabiliy NHS Trust, Mr Michael Young, Developing Manager,
North West London Strategic Health Authority and Ms Denise Gilley, Policy Leader for older people,
County Durham and Tees Valley Health Authority, were examined.
Q1 Chairman: May I welcome you to this session of
the committee at the start of a short inquiry into
continuing care. We have three separate short
sessions this morning. As we are trying to get
through so many witnesses and questions, may I ask
colleagues to be brief and witnesses be reasonably
concise. May I thank you for your written evidence.
Would you briefly introduce yourselves to the
committee.
Ms Gilley: I am Denise Gilley, Policy Leader for
Older People at County Durham and Tees Valley
Strategic Health Authority.
Ms Cox: I am Yvonne Cox, Chief Executive from
the Oxfordshire Learning Disability Trust.
Ms Attlee: I am Cath Attlee, Director of
Commissioning & Modernisation at Hounslow
Primary Care Trust and Chair of the North West
London Continuing Care Review Group.
Mr Young: I am Michael Young, a development
manager for partnerships at North West London
Strategic Health Authority.
Ms McHale: I am Elaine McHale, Director of Social
Services for Wakefield, but representing the ADSS
and LGA.
Q2 Chairman: May I begin by just exploring the
issue that we, the committee, come back to in almost
every inquiry that we do that relates to social services
and health, and that is boundaries. Obviously the
boundary is at the heart of much of what we are
going to be talking about this morning. I have a clear
recollection of Frank Dobson in front of the
Committee when we were having an inquiry into the
relationship between health and social care and the
division between the two. I asked him if he could give
us a definition of the division between health and
social care. He said that he honestly could not. That
was probably five or six years ago. Are we any nearer
establishing a division? Can anybody give me a
categorical division between the two areas?
Ms Gilley: I think we are nearer but I do not think,
unfortunately, unless one of my colleagues is about
to volunteer, any of us could give you a categoric
definition. Much of that is based on the needs of
individuals, which will diVer. If you are going to take
account of those on the one side, which is what we
are trying to do currently, and you have a very tight
definition, that will exclude some people who
otherwise should be funded by the NHS.
Ms Attlee: As policy and practice change, the
boundaries are shifted, so we are looking more and
more at diVerent professionals taking on diVerent
skills and mixing those. It is not helpful to define
things specifically as a health input or a social care
input. We are looking more and more at being able
to provide complex packages of care by a range of
professionals. In some ways, the policy here is a little
behind the practice around that developing role.
Ms McHale: I would like to echo what my
colleagues have commented on there and the fact
that we do have to modernise this criteria and
guidance to reflect the aspirations of policy between
both health and social services. That is potentially
slightly easier to define but potentially restricts what
social services do because of the diVerent statutes
available.
Q3 Chairman: One of the issues we have talked
about on many occasions is removing completely the
definition of a boundary. If that were to happen,
would it not make your work a good deal easier? I
am struck that when we are told to remove that
boundary, inevitably Treasury have to move one
way or another, either to introduce charges to the
NHS for what is currently free care, or to remove
means-tested social care charges, which would be
tough for any government to do. If one looks at the
cost of what I regard as an industry around the
division between the health and social care of people
on both sides of the fence attempting to make sense
of something that, frankly, is not sensible, would we
not save a substantial amount of money? Has the
amount of money that would be saved around the
margins by abolishing this division ever been
calculated?
Ms McHale: There is an element of truth in that.
There is lot of public funding being spent on legal
definitions, particularly around this policy guidance,
and much wasted time and energy in trying to
achieve an outcome for individuals in diVerent local
authorities. Fundamentally, there is a lot of unmet
need here as well in terms of the application of
continuing care. I do not think this is properly
resourced. Whether there is suYcient to be able to
get it out of what is going into the legal challenges or
the diVerences of opinion is potentially a bit
underestimated.
Q4 Chairman: Has anybody in an organisation like
yours that has obviously been involved in this issue
for a long time, the ADSS, along with, say, the NHS
Confederation or somebody who has a role in health
actually looked at an estimate of the costs of
abolishing the charges on the social care side and
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balancing that against the current costs of policing
this division about which none of us feel able to
come up with a definition? Ms Gilley says we are
getting near it. I can recall getting near it 25 years
ago but we are still not there. Has the ADSS made
an estimate or a guesstimate of this?
Ms McHale: I cannot honestly say that anyone has
attempted to guesstimate. I would like to add that as
there is closer movement towards what health and
social services do, that means some things have been
lost in what social services have done previously.
That is potentially around the prevention agenda
and the domestic/domiciliary aspects of enabling
people to live independently. These things are not
calculated.
Ms Gilley: The nearest you would be able to come to
it, and it was some considerable time ago (not quite
as long ago as 25 years, you will be pleased to hear)
is the Royal Commission into Long Term Care,
which did quite a lot of work in calculating various
scenarios. It would be possible to extrapolate some
of the information from that. The amounts were
hugely significant to the Treasury.
Q5 Chairman: It is fair to say that the cost of policing
this divide is a very sizeable amount of money, is it
not?
Ms Gilley: Yes, but you would have to extrapolate
the figures from the Royal Commission and then
perhaps look at one local area and extrapolate from
that. If you multiply by 28, for instance, that would
give some order of magnitude of one to the other.
Ms Attlee: This is an important calculation that
needs to be done. It would be increasingly diYcult to
do. Certainly, in the way in which we have assessed
and gone through the process of assessing people’s
needs for continuing care, we have tried not simply
to focus on what is the financial responsibility but to
look at how we use this process to ensure that care
needs are appropriately met. We are disentangling
the policing and financing issue from doing a proper
assessment. Finding the appropriate care package
would be quite diYcult on the costing elements. That
bit around doing a multidisciplinary assessment,
recognising the appropriate needs and how we meet
those in a care package would still need to be done,
whether or not it was met through fully-funded NHS
care or through a local authority funded package.
Q6 Chairman: One of the issues we have picked up in
evidence we have received is the impact of diVerent
eligibility criteria. Ms Gilley suggested that in
looking at costings, you could look at one area and
extrapolate from what is happening in one area what
a national cost might be. One problem with that is
that we hear the situation is diVerent from area to
area. Can you give us examples of some of the
diYculties that perhaps you pick up with diVerent
eligibility criteria when you work physically across
boundaries?
Ms McHale: I have led a group of West Yorkshire
local authorities and we have agreed the eligibility
criteria with the strategic health authority. We
believe we have a good partnership approach to its
implementation. However, there are diVerences in
its application, even though the eligibility is the
same. We have pulled a group of representatives
from both health and social services together to look
at cases every now and again to see why in Bradford
you might get continuing care with this case but, if
you applied for it in Wakefield, you would not.
There are still diYculties with the same eligibility
criteria and the same enthusiasm to implement that;
there are diVerences of outcome.
Q7 Chairman: Be careful how you answer this next
question because it might land on your desk. I can
think of a particular case I am dealing with where a
Wakefield resident has gone to Barnsley, which is in
a diVerent SHA where presumably the organisation
is somewhat diVerent?
Ms McHale: That is interesting because payment by
results is going to make this even more diYcult.
Q8 Chairman: Can you say a bit more about that?
Ms McHale: Yes. Payment by results is going to
mean a transfer of cases across a wider range of
providers. You can get the first assessment of
continuing care in an acute hospital. You will be
asking staV potentially to work against diVerent
interpretations of continuing care criteria for any
amount of patients coming in from diVerent
locations. Potentially, it will become even more
diYcult for people to accept continuing care by that
change in policy alone.
Q9 Chairman: The choice agenda has a huge bearing
on this?
Ms McHale: It does, and the modernisation of this
policy has to take account of these new policies that
are coming in, too. The same would apply to the
impact on direct payments under Section 117.
Ms Attlee: It is worth pointing out that however
clear the national framework was or a local
framework is, there will always be an element of
professional judgment. We have discovered, in terms
of trying to eliminate the inequitable impact, that it
is about putting in a system with the checks and
balances. You have a multidisciplinary team doing
the assessment; another multidisciplinary panel
validating that assessment locally; and then a
strategic health authority-wide or higher level
authority validating across the board, so that you
are constantly doing that cross-checking. You are
not going to eliminate the element of professional
judgment, even if you have standard criteria across
the country. Every clinician will interpret slightly
diVerently, and practice is changing all the time. You
need constantly to be validating against that new
practice. It is important that in any system we
implement you build those checks and balances in.
One of the advantages of the latest criteria on
implementation has been in allowing us to recognise
that and to establish those mechanisms jointly with
local authorities, so that we are together validating
on a regular basis. That needs to be built into the
system throughout, preferably involving users in the
voluntary sector, so that we are getting that
validation throughout the system, not simply
through the statutory bodies.
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Q10 Chairman: Do you think that with the
development of common single assessment
processes there is now much greater understanding
between professionals as to what the criteria are?
Where criteria are established, is there a greater
ability to get to an agreement on the criteria or
whether someone satisfies the criteria? Has that
improved?
Ms Attlee: Yes.
Ms Cox: I was reflecting on some of your earlier
questions and answers. In looking at learning
disability services, which in many respects have been
at the forefront of much of this work, 10 or 15 years
ago we were used to having the money put together.
There has been general acceptance of a
multidisciplinary/multi-agency approach in terms of
the assessment of people’s needs and how those
needs on an individual basis can be met. It is
important that as we develop new guidance that is
picked up. It is not just about continuing care for
older people but for all of the population. There are
probably some models around in groups of people
that may be smaller per head of population but are
equally important. I think the single assessment
process, which we are now seeing in children’s
services and for learning disability and so on, begins
to iron out some of these things. That would
undoubtedly give a better consistency and level of
understanding by everybody.
Q11 Chairman: I was struck by a comment that
Anne Abrahams, the Health Services Ombudsman,
made to one or two of us who met her recently. She
said that the professional joint working, currently
common practice in most areas, left departmental
demarcation lines behind it many moons ago. Is this
not an area where the demarcation lines are grossly
outdated and it would help you people if those
demarcation lines—and I can be repetitive and
boring on this subject, as I have been for nearly eight
years on this committee—were abolished and we
moved forward without that problem? Would that
not be extremely helpful in moving forward in the
future?
Ms Cox: I think it would be helpful if you look at the
Cabinet OYce document January 2005, Improving
The Life Chances For Disabled People and the view
for provision for that over the next 25 years. That is
broader than simply health and social care. That
would embrace education, the benefits agency and
so on. The vision behind that around individualised
funding, using direct payments and a variety of other
methods would seem to indicate a very diVerent and
better way forward, leading on from the issues of
choice and all the things that the NHS has done, but
linking into other mainstream policies around social
care—housing and so on.
Q12 Dr Naysmith: On this subject, it might be useful
to ask Ms Cox at this stage: do you think we should
have separate criteria for diVerent client groups? I
know you said that the older ones are much larger in
numbers than some of the others. Do you think that
would be the right thing to do?
Ms Cox: Personally, I think that the criteria,
particularly for adults, does need to be diVerent. We
piloted a modified system from Thames Valley
recently. I am struck by the emphasis on what people
cannot do. The whole issue around learning
disabilities, certainly in Valuing People (DH March
2001) and Improving Life Chances For Disabled
People, is about valuing what they can do and what
their contribution can be. I think we need something
that matches those two together. I do not think that
is either diYcult or impossible but you have to know
that a 25-year old going through this process will
have very diVerent expectations for the rest of his life
than an older person would have and the processes
they go through. This is something that ought to be
reflected. This is about that modernisation.
Q13 Dr Naysmith: What stops that happening
everywhere? You say you have a pilot scheme.
Ms Cox: Around parts of the country they have
begun to do that. I know that certainly in north
London they have used it both for people with a
learning disability and people with mental health
problems. There is nothing very specific in the
guidance. The guidance is predominantly around
older people, delayed transfers and so on, and the
issues those raise. It would be helpful if the guidance
built on that and picked up where services are and
the direction in which they are going for those
individuals and recognise that the NHS will not be
the total provider for somebody in that age range.
They will want a broad spectrum of services, of
which the NHS may be a very important part, but
there will be other elements that will be equally
important.
Ms Attlee: I might venture to disagree. Most of that
is absolutely right but we should be making sure that
for older people those principles of promoting
independence and enabling are applied to them,
rather than taking a diVerent approach from that for
younger adults. Certainly the evidence from Age
Concern and everyone else is that older people are
not a distinct set of people who suddenly lose all
their aspirations. These are people with a similar
range of disabilities, abilities and aspirations and we
should be ensuring that promoting and enabling
approach is across all adults, however old they may
be, rather than taking separate approaches.
Certainly in north west London we have criteria that
apply across the board and recognise a huge amount
of dual diagnosis and multi needs that you cannot
simply define as a learning disability or applied to
older people or whatever. We try to encompass all of
those across the board.
Q14 Dr Naysmith: What do you think of that, Ms
Cox? That is quite the opposite of what you were
arguing.
Ms Cox: It reflects what I said earlier about learning
from other areas. I am hearing that in north London
they have done that to promote independence,
choice and control in terms of valuing people. In
learning disability terms, that is something we have
been striving towards for a very long time. My
concern is that we do not go backwards. If what we
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are saying is that we want to move forward in the
same direction for all groups, that is a fantastic
aspiration to have.
Ms McHale: I would add a little bit to this part of the
debate in that you do not need to go down separate
criteria guidance if you focus on the needs of the
individual. Need should determine the outcome
rather than the potential professional input that is
required if there are diVerent service user groups.
You should consider the impact that continuing care
could and should have on children. I firmly believe
that if children were accommodated within the
continuing care policy, then you would see a
diVerent long-term commissioning arrangement of
service provision, which would build for the future
and contribute to the aspirations we have around
government policy.
Q15 John Austin: For clarification, may I add to an
earlier question from the Chairman that the
Chairman finds it incomprehensible why anybody
would move from Wakefield to Barnsley! I want to
come on to the independent review the department
published and the reported response from SHA staV
which described a staggering lack of central
guidance. The Ombudsman, in her report, has said
of the guidance that there was a question of
misinterpretation and misapplication. Is it a lack of
guidance or is it a lack of consistency about applying
guidance, and could the Department have done
more to ensure a consistency of approach?
Ms McHale: Personally, I think there have been
several attempts at issuing guidance, which have
facilitated the inconsistency in application. One
person’s interpretation of complexity or intensity is
diVerent from someone else’s. I think more could
have been done with regard to clarification and
transparency about the definitions and the
applications.
Ms Gilley: One of the issues at the time, following
the publication of Anne Abrahams’ first report on
continuing care, was that the Department of Health
was not quick enough. That was our issue in terms
of the processes that we were putting in place in
order to try and deal with the numbers of people who
were contacting us, et cetera. That is my comment. I
do not know if there was going to be much that the
department was in a position to do at that time that
was going to be helpful on the criteria themselves.
The issue was about helping strategic health
authorities, our primary care trusts and social
services to deal with the numbers of people who were
asking for their cases to be reviewed.
Mr Young: I came new into this at the same time as
the guidance was coming out. I think the guidance
was useful and has improved the consistency.
Certainly, having seen the work done by the
predecessor health authorities, the guidance has
already enabled us to improve the consistency of
application and the patient experience of being
assessed. Working towards a national framework
with further and more guidance will support this
even more, particularly around the guidance of
involving users and carers in the assessment process
and also in understanding the decisions.
Q16 John Austin: If we go back to the Ombudsman’s
recommendations and the review, there has been
some criticism that the Government’s action fell
short of the Ombudsman’s recommendations. I
know my colleague, Dr Naysmith, wants to pursue
this with the next set of witnesses. We have heard a
lot about the postcode lottery and has the review
merely reduced the number of postcodes from 95
to 28?
Ms Gilley: I should not really be saying this. I do
think that over-simplifies things because it is to do
with the assessment process. It is not to do with 28
strategic health authorities, with all due respect, but
the number of primary care trusts and their partners,
the social services departments. In terms of the
decision-making process, that is generally the first
and very key stage of that process. It is about
monitoring them and their consistency of decisionmaking and making sure that people who are
assessing and people who are deciding are doing that
in a consistent and transparent way.
Q17 John Austin: Mr Young has mentioned the
question of the National Framework. Perhaps I
could put it to all of you and ask what that
framework should include. Should it include a
complete revision of the eligibility criteria and
should it address both health and personal care
issues?
Ms Attlee: It should not be a complete revision in the
sense of starting again. There has been a huge
amount of progress in the criteria that we now work
to. As you say, the 28 health authorities are much
closer in their approach and delivery than the
previous 96 were. The review group is in place and
doing that work; it is building on all that good
practice that has happened and the good policy that
has been developed. It is not about a wholesale
review but about taking the best and confirming that
as the national standard, which will be very
beneficial. We have certainly developed our policy in
conjunction with local authorities. It is absolutely
critical that it covers the whole spectrum; otherwise
it really makes it very diYcult to implement the rest
of the policy around integrated services and
integrated care packages for people. That is what we
are all about delivering.
Ms McHale: In future, the policy should
concentrate on being transparent, equitable and
acceptable. It certainly should look at how we do
things diVerently, building on good practice and
good examples. It has to be fit for purpose for the
changing services. It is not about just doing exactly
what we have been doing and a bit more of it where
it is right. We have to change to develop the policy
so that it reflects how we want things to work in the
future. That does mean encompassing issues around
learning disabilities, direct payments, challenging
behaviours and everything else.
Q18 John Austin: And a consistency of approach on
assessment procedures?
Ms McHale: There should be a consistency of
approach on assessment procedures and ownership
of continuing care. We talked about the 28 strategic
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health authorities but the PCTs have to own this as
well. It should not be resource-driven. There is a
huge element of resource availability that relates to
interpretation of eligibility.
Q19 John Austin: I assume that organisations like
the ADSS are in continuing negotiation or
consultation with the department over this?
Ms McHale: We have been invited to participate in
the revision and we are very pleased about that. We
would like to be partners in it and not just required
to sign up to agreements.
Q20 John Austin: You have no indication when they
are likely to be ready? You have no inside
information about that?
Ms McHale: No, I have not.
Q21 Dr Naysmith: We have had lots of submissions
putting in evidence to the Committee saying that
confusion exists widely between the National Health
Service continuing care system and the registered
nursing care contribution framework I see a few
people are nodding, so obviously that exists. Do you
think it is a problem? Does everyone think it is a
problem? Is that generally recognised?
Ms McHale: It is.
Q22 Dr Naysmith: What do we do about it?
Ms Gilley: It goes slightly wider than that. One thing
we have found is that members of the public are very
confused about some very fundamental things, the
most fundamental being that NHS services are free
and social care services are charged for, so I think
that is the first point.
Q23 Dr Naysmith: I was not thinking about the
public but about the people who do the
commissioning, but both will be true, I am sure.
Ms Gilley: The other things flow from that. Another
issue is that diVerent sets of people on occasions
have been looking at nursing care bandings from
those who have done continuing care. We have tired
to bring that together so that, in terms of local
decision-making panels, they do both. They will first
and foremost look to see whether an individual is
eligible for continuing health care and only if and
when they have decided that that person is not, will
they then look at banding, if they are in a nursing
home.
Q24 Dr Naysmith: That is the way the system is
supposed to work. Why does it not work like that?
Ms Gilley: The system in County Durham and Tees
Valley certainly does now work like that. I cannot
promise that it has always worked like that but that
is the premise upon which we make our local
decisions.
Ms McHale: That is correct. It is supposed to work
like that. The Delayed Discharges Act requires the
continuing care assessment to be made first. If you
look at the guidance for the RNCC, it gives
definitions and examples of the highest banding
being below that of the Coughlan outcomes. There
is a huge level of confusion about this. The
continuing care banding has to be diVerentiated
from that. I would add that there is not a proper
process for review. If you are in a nursing home and
you are on the high banding of nursing free-funded
care, then if you then deteriorate into continuing
care, potentially there is not the opportunity
automatically to have that resolved. There are issues
about that.
Q25 Dr Naysmith: What would you say should be
done about that?
Ms McHale: We have to eliminate the discrepancy
around the examples in the guidance for the higher
level of nursing funding and re-emphasise the
requirement for the continuing care assessments to
be done, first and foremost. There has to be built in
the period of review and monitoring, the availability
and accessibility for people to do that automatically.
Q26 Dr Naysmith: Ms Attlee, you wanted to come in
on the general broad thrust.
Ms Attlee: I am slightly surprised about that because
certainly there is a built-in expectation that a nursing
review would be undertaken every year and at any
point, either the inmate or the nursing home can
trigger a continuing care assessment. Again, it may
be about practice not reflecting policy. The
framework is such that this should be a regular
review of nursing care application.
Q27 Dr Naysmith: This is the whole area that we are
investigating: why in diVerent places do diVerent
things happen, even though the criteria are supposed
to be laid down. Going on to what is probably a
slightly more embarrassing question for all of you:
does some of this have to do with the fact that
primary care trusts have fixed budgets and that one
of them is more expensive than the other, so getting
towards the end of the year—Some people are
nodding and some shaking their heads and saying it
is not true.
Ms McHale: There is a big element of diYculty
facing primary care trusts in balancing their budgets
and dealing with the demands that continuing care
can make. We have done some surveys of local
authorities. We know there is at least one PCT which
has a cap on how much per person they will give
towards care.
Q28 Dr Naysmith: Can you be explicit on that?
Ms McHale: I cannot. I would have to supply that
information to the select committee later.
Q29 Dr Naysmith: It would be good if you could do
that. Do you think it never happens, Ms Attlee?
Ms Attlee: No, I am not saying it never happens.
Certainly PCTs have financial problems and that has
a bearing eVectively on how things are implemented.
I do not feel in our area that is the reason why
diVerences occur. Certainly it puts a pressure on the
whole issue, and all the more reason why it has to be
done in a joint fashion. Certainly in our case most of
our commissioners who are commissioning longterm care are jointly employed by health and social
care. The issues about whether it is our budget or
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your budget are not the key issues as to why
diVerences occur. That may well be the case in other
parts of the country. I can only speak for north west
London in this regard. We have tried to build into
the system that it is about the needs and the
appropriate placement and appropriate funding
source and then, yes, the budget pressures appear,
but they appear as part of our overall position. You
may be familiar with north west London’s financial
position perhaps as a result of that.
Q30 Dr Naysmith: You may not realise but this
could well go out on the radio on Sunday night and
people in Hounslow might well write in and say they
do not recognise that system, but you are happy to
say that?
Ms Attlee: I am at least confident in saying that if
somebody has been denied NHS full funding in
north west London it is not because we have not got
the money; it is because they do not meet the criteria.
Mr Young: I would support that for the Strategic
Health Authority.
Q31 Dr Taylor: I live in an area where I am just on
the edge of one strategic health authority abounding
two other strategic health authorities. Like other
members, I do have problems about where the
criteria appear to diVer. I quite take the point that
you have made that it is very often the interpretation
of the criteria rather than the criteria themselves,
but did our two strategic health authority
representatives take into account the neighbouring
strategic health authorities’ plans when they made
theirs?
Mr Young: The work in north west London had
started very early, following the 2001 guidance. This
was before my time. Cath Attlee chaired a group on
this. I think other health authorities around—and as
London health authorities we meet with other health
authorities—had looked at our criteria and were
seeing what was good and what was relevant to
them. There had been some work done on that.
Q32 Dr Taylor: There was a certain amount of
consistency between areas?
Mr Young: Yes.
Q33 Dr Taylor: What about in the north?
Ms Gilley: I would say something similar in the sense
that we certainly had more detailed discussions with
our more northerly SHA, which is Northumberland,
Tyne and Wear. We did also have some discussions
with people from Yorkshire and also from the northwest to try and find out what other people were
doing, what their approaches were, how they were
going about trying to get consensus to steer the
whole process.
Q34 Dr Taylor: Do you come across problems with
cross-boundary flows where somebody is assessed in
one area and goes to a residential home in another
area?
Ms Gilley: Yes. It would be foolish to say that there
are not those issues but there have not been any cases
that we have felt have been hugely unresolved. We
have had a number of people who have ended up in
acute care in the north east and who have then
wanted to move south to be nearer relatives, and
there has been a negotiation but we have reached
agreement. The person has not ended up remaining
in hospital or going somewhere else; they have gone
where they wanted to go.
Q35 Dr Taylor: Again, with the strategic health
authorities, turning to the interpretation of the
criteria, how do you monitor PCTs on their
performance?
Ms Gilley: This is the point I was trying to make
earlier. This is going to be important nationally so
that something happens on this. We do have a
software programme. I say that with my fingers
crossed. It does exist and it does work but it does not
give us the level of data extraction that we would
like. It is the beginnings of something. To be
truthful, I think that would be the only way in future
that you would be able to do this in terms of looking
at spend, numbers of joint packages, numbers of
cases for people who have a learning disability and
through a whole range of issues that you then would
want to pick out and look at. Then, as you would do
with any other data, you can begin to examine the
outliers. There might be good reason why you have
particular outliers, but at least it would give you the
prompts to do that.
Mr Young: We are probably not quite at the stage of
having the electronic data but we are looking at
similar issues around placement and getting the
financial information. There are diYculties about
financial information in diVerent PCTs that may be
using some money from continuing care budgets and
some money from community nursing budgets.
Therefore, it is about having an understanding both
as to how the budgets are put together and a
consistency of understanding of what should be
included in financial measures. We also have the
SHA panel which sees cases. We have been using the
panel’s test for consistency of decision-making
across primary care trusts. We are also looking, as
part of the training for assessors, at possibly
assessing sample anonymised cases to check that the
same results come out.
Q36 Chairman: Would it be fair to say, comparing
your area to Ms Gilley’s area, that you would have
more of what she terms outliers? My recollection is
that when the community care changes came in, in
looking at the London experience, people seemed to
move much further afield from London than
perhaps they would have done in an area like
Durham. With your geographical area, are you
likely to have more people moving out of your area
and therefore you need to deal more with other areas
than perhaps Ms Gilley would in the north east?
Mr Young: Yes, but if they moved out of our area,
they would be assessed under our criteria initially.
This goes back to a previous question: one of the key
problems is not necessarily the diVerence in criteria
but the appearance of criteria, the way they look in
each strategic health authority. That means that if
people move out of area, and particularly in terms of
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wanting annual reviews (and it is very hard in
London to do the annual reviews as we do send a lot
of people out of area) someone who understands our
criteria and our assessment tools would need to be
able to assess them.
Q37 Dr Taylor: On the same lines, please help me to
understand this. The responsibility remains with the
PCT but presumably it is usually hospital staV, trust
staV, who do the assessment. Is that right?
Ms Attlee: It is usually a multidisciplinary set of
staV, so it may be a social worker and a hospital
nurse or therapist, or, if the person is in the
community already, a community-based nurse.
Q38 Dr Taylor: The team would include people from
the acute hospital trusts?
Ms Attlee: If the person was in hospital, yes.
Q39 Dr Taylor: I hate the phrase “toolkit” but there
are various toolkits for this sort of purpose. Do you
take note of which they use? Do you try to get them
to use a particular toolkit across the patch?
Ms Attlee: We have a standard health needs’
assessment form which we ask all staV doing the
health component of the needs’ assessment to use, or
they may use something very similar. Some of the
hospitals in London have something very similar. As
long as it produces the same set of needs’ data, that
is fine. They need to be able to produce a needs’
assessment that is able to be summarised in the
standard format that we use for the north west
London criteria.
Q40 Dr Taylor: Is that all a toolkit is, a needs’
assessment form?
Ms Attlee: There is a health needs’ assessment and
then there are other components that would amount
to it, yes.
Q41 Dr Taylor: If we do move to a single set of
national criteria, which hopefully we will, would you
then support a single toolkit or a range of toolkits?
Ms Attlee: I think that would probably be a range
simply in terms of professionals wanting to have
their own.
Q42 Dr Taylor: That is a range for diVerent client
groups or diVerent professionals within this?
Ms Attlee: There will be diVerent tools that will add
up to the whole needs’ assessment. The health needs’
assessment will focus on particular nursing needs,
medical needs, et cetera. You have therapeutic
needs, the psychological needs, et cetera. Normally
there will be a number of components that will add
up to the full needs’ assessment. There will be
diVerent tools being used by diVerent professionals
as part of the multidisciplinary team to add up to
that.
Q43 Dr Taylor: Even with the diVerent tools, you
think you will be able to monitor and make sure that
everybody is being treated equally and fairly?
Ms Attlee: You have to be constantly validating. It
is not a fixed scientific process. There needs to be
constant validation, in the same way as the issue
around developing the single assessment process is
not static; it will be constantly developing. Yes, I
think one can do that validation process.
Q44 Dr Taylor: That is your aim?
Ms Attlee: Yes.
Q45 Dr Naysmith: We have just been talking about
the confusion between the two things. A lot of
people have said that the RNCC framework was
useful as a national model. Does that suggest that a
similar approach would be useful for the continuing
care on a national basis? In a way, it is similar to a
toolkit but this would be a national thing.
Ms Gilley: You still come back to the same thing,
that you do need a national framework, be it for
nursing bandings or continuing care or anything
else. However, this is about the application of that.
What has never been done to my knowledge, and I
may be wrong about this, a comparison of how
people are banded to see whether somebody who is
high banded in one of our nursing homes would have
similar needs to somebody who was high banded in
a nursing home in north west London. Yes, in
essence, use it, but the same thing needs to happen
about nursing home bandings as does about
continuing care, which is about monitoring how
they are put in place and implemented.
Q46 Jim Dowd: Could I look at the area of the
retrospective reviews and ask you all what you think
the best mechanisms are for ensuring that the lessons
that they reveal and the past failures that they
uncover is incorporated and informs the
development of the national framework?
Mr Young: In north west London we have identified,
through the retrospective reviews, problems in the
past. The key improvement that has already been
incorporated is that by asking our primary care trust
assessors to go out and carry out these independent
reviews, under an agreement that we as the 16 local
authorities and PCTs together drew up, there is a
consistency of approach, particularly about
involving the carer in that review. The information
from the carer has been incredibly useful. Many
assessors have said to me afterwards that doing it
this way, which for some of them was new, has really
improved the process. I know that some of the PCTs
are now sitting down with the carer and using the
assessment tool: the carer has the assessment tool;
the assessor has the assessment tool. They are doing
it together and that is producing a much happier
individual at the end. The individual understands
the decision much better if he or she is involved in the
assessment process. For north west London that has
been far and away the most eVective outcome from
the retrospective reviews.
Ms Attlee: Some other practical things have come
out. One is the poor practice in terms of information
and record-keeping, as has already been addressed,
and which in a sense is being addressed separately as
well by things like the Freedom of Information Act
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and everything else. Some of the poor practice that
was clearly in place from 1996 onwards is already
being tackled through a number of things. That
needs to be very clearly built into the national
framework: record keeping, assessment process,
involving users and carers in the process, et cetera. I
think those lessons are already being learnt. They
need to be stated within any national framework
for review.
Q47 Jim Dowd: When you say “poor record
keeping”, do you mean the quality of what was in the
records or the absence of records?
Ms Attlee: Both.
Q48 Chairman: Are we talking in particular about
nursing homes here?
Ms Attlee: Not just nursing homes but everybody.
Q49 Chairman: That is right across the board?
Ms Attlee: Yes, not everywhere but examples across
the board.
Q50 Jim Dowd: Are there any examples of where it
has actually led to changes in practice?
Ms Attlee: Certainly in information, record keeping
has led to improvements in practice across the
board, and again that has been addressed by things
like the delayed discharges and the other initiatives
that are going on in terms of record keeping. Yes, I
would say there has been a huge improvement.
Ms Gilley: In terms of accountability, people who
are making the decisions jointly across primary care
and social care now feel that they are accountable to
the people about whom they are making the
decisions. Being brutally honest, if you go back to
1996/97, that was not the case. That is why there may
be records of someone’s assessment but they tend to
be very clinical about their disease process, et cetera,
rather than actually their needs, and there is very
little, if anything at all, about why they were not
eligible for NHS funding.
Q51 Jim Dowd: Why do you think the timetable, the
projections, for completing the reviews has slipped
so badly?
Mr Young: Certainly, in north west London, we did
not expect this issue of lack of records or the
diYculty in accessing records. I think we assumed
that we would be able to write oV for the records and
get them within 28 days. Unfortunately, that has not
happened. Cath Attlee raised this issue previously.
That has been a great diYculty. Now everyone is
much more aware that there is this accountability in
the process and the stream going up through the
PCT and local authority multidisciplinary panel,
then the SH panel, then the Ombudsman. People are
much more aware that they must keep records and
that those records must clearly explain the decisions
they have made.
Q52 Jim Dowd: It is not just a tardy approach to the
reviews; it is really that the reviews have been far
more complicated than was envisaged at the outset?
Mr Young: Yes.
Q53 Mr Burns: Have you completed all the reviews
up to complaints received by March 2004?
Mr Young: All the reviews have been completed in
the first stage. In north west London we oVer people
a second opinion if they have been unhappy. All
those second opinions have now been completed as
well.
Q54 Mr Burns: Do you know, oV the top of your
head, how many cases you have found where there
was a mistake made and so compensation has had to
be paid, either to the individual or to their family, as
a result of that mistake?
Mr Young: In north west London, and I do not have
the exact figure, it is just over 100.
Q55 Jim Dowd: Out of how many is that?
Mr Young: Out of about 220–230.
Q56 Mr Burns: As a matter of interest, what
compensation have you paid? If an individual, at
whatever time the wrong assessment was made, had
then to sell his or her home, they could well
financially have lost out considerably, depending on
the state of house prices at the time they sold and
now. Have you just paid the cost of the care or has
there been an element of compensation to make up
for the knock-on eVects the wrong decision has had
on an individual and their financial position?
Mr Young: The formula we used is the cost of care
plus the retail price index plus inflation.
Q57 Mr Burns: In fact, no compensation has been
paid if people have financially lost out because they
have had to sell their house?
Ms Attlee: We use Department of Health guidance.
Q58 Mr Burns: Are you anticipating anyone who
might be in that position suing you?
Mr Young: We have not as yet heard from any of the
people to whom we have oVered restitution that that
is what they are looking for. I have to say that when
I gave you those figures of 100 plus that does not
necessarily mean, because we have carried out these
reviews in a very thorough manner, that the original
decision was wrong. It could be at some point in
between.
Q59 Chairman: The circumstances may have
changed.
Mr Young: Yes, the circumstances may have
changed at a later stage and we have identified that
from that point. Normally what has happened is that
these have been quite small amounts for the
individuals because it has happened at a later stage.
There have been very few at five years or whatever.
It has normally happened for the last two or three
months of someone’s care.
Q60 Mr Burns: Just one final point on this: when you
make an oVer to someone because a mistake has
been identified, do you make the oVer as a final
settlement?
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Mr Young: We do, but we also give them the name
of the local Age Concern representative to talk to
about the issues as well.
pay out for the wrong decisions, presumably in the
repayment of the costs of care and not
compensation.
Q61 Mr Burns: Is that before they accept?
Mr Young: Yes. We say, “You may wish to discuss
this with someone”. In the form it sets out that if
someone agrees, it is a final oVer.
Ms Gilley: For us it is not; we would just make the
payment. We use the Department of Health
guidance and pay to people restitution rather than
compensation.
Q65 Jim Dowd: Has anybody identified any cases
along the lines that Mr Burns has just mentioned?
Have you any experience that that has actually
happened?
Ms Gilley: No.
Mr Burns: Ms Gilley has just said that she thought
that some cases had been sent to the Ombudsman for
a request.
Jim Dowd: If you wanted to sue the health authority
or the PCT you would just get on and do it. You
would not need to ask the Ombudsman for that,
would you?
Mr Burns: No, but it would be cheaper to get the
Ombudsman to do it.
Q62 Mr Burns: Can you explain what your
definitions of those two words are?
Ms Gilley: We took legal advice about this as well,
just to be clear. Restitution is to pay back the
amounts of money that people had paid out, plus an
amount of interest. We had also been using the retail
price index. There are various diVerent mechanisms
you can use. That was the one we chose.
Compensation would be as applied in the legal
process: you look at somebody’s loss and, depending
on the circumstances, that could be way beyond the
actual cost of the nursing home fees and it would
then take into account house sale, et cetera. We did
the former rather than the latter. When our primary
care trusts do make a payment to somebody, they do
not do it as a final settlement. If a person still wishes
to appeal, in terms of the local process they can, and
obviously they are still free to go to the Ombudsman
service. That would be the direction that we would
point them in, in addition to local advice centres.
Q63 Mr Burns: What would happen if someone or a
family turned round and said, “We are X thousand
pounds out of pocket because we wrongly had to sell
the family home and we want compensation”?
Would you consider that on its merits or would you
reject it out of hand?
Ms Gilley: We would have discussions with the
family. We have met with a number of people who
have had particular issues. We would write to them
formally to say that we will make them the payment
of what is restitution and that they can accept that
but it is not a final settlement. If they still have issues
about how the money settlement has been
calculated, then we would say that they should take
those to the Ombudsman service. I understand that
Anne Abraham’s service has actually been asked to
look at a number of cases similar to that. I do think
that then that would be the right and proper place.
Q64 Mr Burns: Potentially, the £180 million that the
Government has identified as the probable cost that
they are going to have to pay out for wrong decisions
being taken could in fact, depending on the
Ombudsman looking into those issues, be infinitely
more than £180 million?
Ms Gilley: I am not aware of how much of the £180
million that was identified has actually been spent.
Mr Burns: What the Government is saying is that
they have put aside £180 million, which they
anticipate is the total cost they are going to have to
Q66 Jim Dowd: Not necessarily. The Ombudsman’s
recommendations are not mandatory. Could I come
back to the numbers, Mr Young, for a moment? You
said about 100 out of 220. How many more cases are
you expecting to look at?
Mr Young: The ones that have come since April, and
I think we are up to cases that have come in within
the last six months. I think we have about 10 to 15
of those.
Q67 Jim Dowd: We are looking at an overall figure
of round about 40% of the cases you look at result
in restitution?
Mr Young: I think it was a bit more than that but,
yes, of a certain amount, not necessarily the full
amount.
Q68 Jim Dowd: In the experience of the rest of you,
is that a uniform pattern across the country, with
variations? Is that generally the kind of level that is
occurring across the country?
Ms Gilley: I would say that ours was probably lower
than that, but you have to look at the history as well
in terms of the criteria that were in place in earlier
years, and whether or not they were incredibly strict.
If they were incredibly strict and restrictive at a
certain point, the likelihood is that for that period it
would result in a significant number of people who
were wrongly denied. However, in areas where the
criteria had been more fair, in that the level for
continuing care was lower, then obviously you will
find less cases. I am not sure it is possible to
extrapolate them.
Mr Young: 70% of our cases agreed have come from
one previous health authority. That supports the
argument.
Q69 Jim Dowd: Which authority was that?
Mr Young: Hillingdon Health Authority.
Ms McHale: The £180 million quite rightly is
payment back to the patients, the service users
themselves, but it does not take account of the cost
of the social services system where potentially social
services has picked up a wrong decision.
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Q70 Chairman: So that we fully understand the
diYculties in those cases where you are having to go
back and look at the arrangements, and picking up
this point about the record-keeping, which must be
absolutely crucial—and many of us can now
understand more easily why it has taken so long to
deal with this matter—can you give an illustration of
a case where the records have been crucial in
establishing a move to a band at a particular point?
I am assuming when you were talking about the
records that you need to examine the records to
work out at what level that person should have been
at any particular time. Can you think of any cases
where something would have triggered the move
between bands that impacts on the banding
assessment they should have been on?
Ms Gilley: That is quite a diYcult one because the
banding system did not come in until 2003, so
anybody whose case we were looking at prior to
2003 was that they may have had some nursing need,
that the system of nursing home bandings and free
nursing care did not exist. For those people it is very
diVerent, whereas for cases after that, after that time
everybody in the nursing home was being assessed,
so by definition the records would be much
improved, because at the very least they would have
had an assessment for the banding process.
Q71 Chairman: Have you made any restitution for
RNCC bandings?
Ms Gilley: No.
Q72 Mr Burns: That answer is not particularly
surprising because presumably the criteria have been
tightened up so much that you would not expect to
be making mistakes since the banding came in, or by
and large you should not.
Ms Gilley: Yes.
Q73 Dr Naysmith: It has been indicated to us in the
evidence we have had that the people who have
benefited most from the review system are those that
are the most articulate and the most intelligent, and
people who are probably most disadvantaged and
need help are the ones who are not applying for
review. What have you done to try and publicise
what was going on and to encourage people who
might not be the ones you would expect to write
letters to their MPs and councillors all the time, but
the forgotten ones?
Ms Gilley: We have used local advice agencies to
make sure that they understood the process in
relation to contact, assuming they knew this was
going on, but certainly—
Q74 Dr Naysmith: That is partly the point, is it not?
Some of them might not even know.
Ms Gilley: If they did not, we contacted them to say
“this is happening and if somebody comes in this is
the kind of thing you need to say, if you want to have
a discussion either with us at the health authority or
our primary care trust”. We gave them names of real
people and telephone numbers to contact. Within
that, coming back to reimbursement, we cannot
underestimate that where people had been made a
payment of reimbursement how that had worked.
The North East, in many ways, has still got some
very close, small communities, which are probably
diVerent from north-west London. We did have one
instance where somebody who was a regular
attender at the local working men’s club then told
everybody about the payment, and the primary care
trust in Easington were then contacted by the club’s
secretary, who asked if we would like to look at all
of these others. The point I am making, apart from
the fact that it is amusing, is that it did pick up some
other people who were family people who should
have been funded. Obviously, we were unable to
replicate that across all of the working men’s clubs
in County Durham and Tees Valley. We have also
done some training as well. We were fortunate to
have some money for two full-time trainers, so we
have used those in terms of making clear, as part of
that process, that if individuals are aware of other
people’s families, or whoever it may be—they need
to think about asking for their cases to be reviewed.
Q75 Dr Naysmith: Did you distribute leaflets to care
homes, for instance, and advertise?
Ms Gilley: Yes, we did produce a leaflet and have
distributed that widely. Our issue with the advice
agencies was that we wanted to contact them
personally rather than just send them the leaflet, but
we have produced written material.
Mr Young: We had a similar thing. We had three
waves of inquiries. The first wave was the people
who had read the Ombudsman’s report, and those
were the ones that came before April; and I would
say that those were largely the group you would have
expected to have applied. The second wave was
where each of the PCTs put out posters into nursing
homes and GP surgeries asking staV as well as
individuals if they were aware of anyone who might
have been eligible. That was also when we contacted
voluntary groups as well. We then got the third
wave, the word-of-mouth wave, when the payments
started coming out. The networks in north-west
London do appear to work quite well.
Q76 Mr Burns: Were you paying people when you
found they had been incorrectly assessed, if they
were dead what did you do? Did you pay it to the
next of kin?
Ms Gilley: This is the lawyer in me coming out, I am
afraid. We actually produced some information and
briefed all of our primary care trusts about the
payments system because we needed to be clear that
the payment was going to go to the right person.
Where the person is deceased, you need to make sure
if it is payment of a member of family, especially if
there is more than one child and a number of
siblings, and everybody else is agreed that it will be
paid to the eldest child. Clearly, you do not want
other people coming back with issues. You would
have to make that process not overly onerous for
people, so we would ask for some proofs around
grants of probate, letters of administration or
whatever, but if people did not have those, the
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Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley
primary care trusts and their finance departments
would make inquiries to make sure the money was
being paid to the correct person.
Q77 Mr Burns: How did the money work, because
the Government is funding it as to £180 million, so
did you have to apply to the Department of Health
every time you needed to make a payment, or could
you draw on some fund? Presumably, you were not
taking the money out of the local health budget.
Ms Gilley: The health budgets are held by each of the
primary care trusts now so the SHA does not have
any money any more.
Q78 Mr Burns: It has a bit.
Ms Gilley: Well, to employ some of the staV, yes,
but—
Q79 Chairman: You are voluntary, are you?
Ms Gilley: No, not yet! It was the primary care
trusts’ finance departments that were making the
payment, and they had previously had an agreement
from the Department of Health about the amount of
money for each of the PCTs, so they knew that they
were drawing the money against an allocation.
Q80 Mr Burns: But the allocation was a ring-fenced
one, was it not?
Ms Gilley: Yes.
Q81 Mr Burns: What was the average time between
agreement between a family or an individual and the
assessors about that there had been a wrong decision
and the amount that was going to be paid to them,
and the actual physical paying of the money? Was it
a swift procedure, or were they having to wait
months?
Ms Gilley: If it was a local decision where the
primary care trust and social services reviewed the
decision and agreed that somebody was to receive
restitution, then that process would be generally
quite quick. I say “generally” because there were
some exceptions in terms of looking back to find out
amounts of money that had been paid, and
sometimes that was a diYcult process, particularly
where fees in an establishment had been in part met
by the individual and part by social services. Barring
that, those payments were quite timely. Where
people appealed to the strategic health authority to
say they did not agree, then obviously it would take
longer if our appeals process then did go back and
say the person had met the criteria for a longer
period.
Q82 Mr Burns: What is your estimate of “quite
quick”.
Ms Gilley: It sounds as though I am prevaricating
hugely, and I am not, but it could be very quick in
terms of a number of weeks between a family being
given a decision or being asked to produce evidence
and then receiving the money. In instances where it
was diYcult for primary care trusts to get
information about fees paid, it could take some time.
That process is very similar to trying to get clinical
information assessments really.
Q83 Mr Burns: I do not want to labour the point, but
if the PCT was seeking to get information about fee
levels, that suggests to me that no final decision has
been taken on an agreement reached between the
individual or their families on the level of payment
they would accept, so you would still be in the
process, surely? I am interested in once the process
has been wrapped up and everything agreed, and a
family or an individual said, “we owe you £20,000
because you were wrongly charged”—how long
from that point to receiving the money?
Ms Gilley: With all due respect, it does not happen
like that, or in our area it does not. We would say to
you, if it was a member of your family, “we think
that your mother should have been fully funded
from 17 July last year up until two weeks ago”. The
issue there is, if the fees had been paid in their
entirety by her, then the amount of those fees is
relatively easy to calculate. If she had had assistance
from social services and they had paid some of the
fee, given the fact that it was last year it would be
relatively easy, but had it been in 1997 it would
require some digging to find out what the
contribution had been, and if it was over a number
of years or over a time when fee levels had changed.
Q84 Mr Burns: There comes a point when that
information is discovered, and a proposal is put to
the individual or their family as to what you should
believe should be the payment to the individual.
Ms Gilley: Yes.
Q85 Mr Burns: At that point, when the individual or
family receives the agreed money—
Ms Gilley: Very, very quickly once the amount of
money had been agreed. The point I was making is
there could be some gap between saying money is
owed for a period, and then receiving money, but
less of a gap between saying “we have agreed it is X
amount of money” and then the cheque.
Dr Taylor: I really only want some written
clarification if it is too long to answer, but I was very
bothered when Ms McHale mentioned the diYculty
of payment by results. Would it be possible to
expound that in writing because it is terribly
important that we do know how that impacts?
Q86 Chairman: When I was talking about
demarcation, you said your staV were employed in
what sounded like a multi-disciplinary arrangement,
employed in the same set-up. Can you explain how
you operate briefly?
Ms Attlee: In my patch we have joint commissioners
for adult care, for older people with learning
disabilities, mental health and disabilities. Those
joint commissioners are jointly employed by social
services and the PCT to commission services for
those people from both PCT budgets and social
services’ budgets, so although we do not have a
section 31 pooled budget, those individuals are
responsible for both halves of the budget. So the
issues around, “is it going to save this one or that
one?” are not an issue in that sense. Obviously, we
have a whole system concern about the pressure on
the budgets, and that is a continuing pressure that we
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are tackling in terms of getting best value from the
market, getting the best nursing home
accommodation or residential accommodation, and
the best packages for our clients. However, we are
doing that together, not separately and competing.
The panel that oversees the long-term placements
and the funding decision is chaired by either a joint
commissioner or one of the social services colleagues
with a jointly commissioned panel, with joint
commissioners on that panel as well as individual
clinicians and social workers. There is always a
collective decision about the appropriate placement
and what is the appropriate funding.
Q87 Chairman: In your experience, how common is
that system elsewhere?
Ms Attlee: I think it is fairly common but not
universal.
Q88 Chairman: I notice Ms McHale was shaking her
head, which does not surprise me.
Ms McHale: Is that what surprises you—that I am
awkward and do not agree?
Q89 Chairman: No, because I knew about the local
practice obviously.
Ms McHale: It is diVerent definitely.
Chairman: Thank you all for an excellent session. It
has gone on longer than we anticipated, but we are
most grateful to you.
Memorandum by Age Concern (CC 29)
1. Introduction
1.1 Age Concern England (the National Council on Ageing) brings together Age Concern organisations
working at a local level and 100 national bodies, including charities, professional bodies and
representational groups with an interest in older people and ageing issues. Through our national
information line, which receives 225,000 telephone and postal enquiries a year, and the information services
oVered by local Age Concern organisations, we are in day to day contact with older people and their
concerns.
1.2 We welcome the fact that the Health Select Committee is holding an inquiry into continuing NHS
health care, as the lack of clarity as to who qualifies for such care is a source of considerable confusion and
distress to older people and their families. Our information line sent out 2,500 copies of our factsheet on the
subject from April 2004 and took over 300 enquiries about continuing NHS health care. Immediately
following the initial Ombudsman’s report in February 2003 we received many hundreds of enquiries. Local
Age Concerns also receive many enquiries. Information and advice workers and advocacy workers have
received training in order to meet the needs for advice by older people and their families for help in pursuing
their cases. In some areas Age Concerns have oVered a specialist advocacy service to help people resolve
their cases locally and if necessary take them to the Ombudsman. Indeed, one of the cases reported by the
Health Service Ombudsman in December 2003 was a complaint which a local Age Concern had taken on
behalf of an individual. We have therefore developed a considerable knowledge of the current system and
the problems people face with the diVerent criteria and assessment tools that have been developed, in the
administration of assessments, and dealing with reviews.
1.3 We submit evidence firstly on the four areas which the Health Select Committee is specifically
examining. We look at areas that we consider will need to be addressed if the system for continuing NHS
health care is to become more transparent, and if the NHS is to properly meet its legal responsibilities to
fully fund the care of those whose primary needs are for health care rather than for accommodation and
personal care.
1.4 Secondly, we submit as an Annex evidence from Age Concern Oxfordshire. This is because Age
Concern Oxfordshire has been funded by Thames Valley Strategic Health Authority to provide an advocacy
service to help patients, relatives and carers in relation to retrospective payments of continuing NHS health
care. They have therefore developed a unique and detailed experience of the way one SHA has operated,
and can make comments on the way that having an advocacy service has worked.
2. Summary
The written Ministerial statement on NHS continuing care
2.1 Age Concern welcomes the statement, although it is still ambiguous as to whether or not the intention
is to have one set of national criteria and one assessment method for continuing NHS health care. We
consider that this is the only way to begin to get a nationally consistent approach, and that it should cover
all four of the devolved administrations. We have some concerns about phrases used in current criteria and
also the way the assessment tools may lead to restrictions. We also do not think any national criteria can
be developed without a major revision of the Registered Nursing Contribution. The setting of the criteria
for bands of nursing care has added considerably to the confusion of patients and staV alike. We recommend
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that the Government revises the RNCC as a matter of urgency. We consider that there should be full public
consultation in line with Cabinet OYce Guidelines. Any new criteria/assessment method should measure
against the tests described in the Coughlan judgement, known as the quantity/quality tests, and it be clear
to the public when their primary need is for health care.
How the changes will build on work already undertaken by Strategic Health Authorities
2.2 From the enquiries we receive, we are concerned that there are some systemic problems, although we
appreciate we largely only hear from people who are dissatisfied with the way their case has been dealt with.
We have little confidence that the Delayed Discharge (Continuing Care) Directions introduced in February
2004 are routinely being followed. We are concerned that individuals not in a hospital setting have even more
diYculties accessing a continuing NHS health care assessment. All relevant staV caring for people in all
settings should be alert to the possibility of eligibility for continuing NHS health care. It should not be
necessary for the individual to ask. Care home staV should also have a responsibility to alert the NHS if they
consider the person in their care might qualify for continuing NHS health care.
2.3 The process of challenging a continuing NHS health care decision is complex and places many hurdles
on the way. This can happen right from the start. We have many examples of statements made by staV that
can only be described as fobbing people oV. Information given to people varies between SHAs, with some
giving clear information about the right to request a review, others being far less forthcoming. Once getting
to the review stage it can be a lengthy and complex procedure, with various additional panels prior to getting
to the SHA panel. If that fails, the individual is then faced with going back through the complaints process,
both at the local level and at the Healthcare Commission, before being able to access the Ombudsman’s
service. Some panels are held without informing patients or relatives or inviting them to attend.
Whether the reviews of past funding decisions had addressed those wrongly denied funding
2.4 We are aware of very large variations in numbers of cases found. This may have a number of reasons,
but we are concerned that diVerent practices developed in diVerent SHAs about how proactively cases were
sought, and the breadth of any search. In some areas it seemed mainly confined to those who complained.
We are convinced that many people will not have been considered especially if they were in a residential care
home or in their own homes. In some cases relatives did not wish to take matters forward as there were
concerns that the individual may have to move if they did get continuing NHS health care. Some SHAs were
reviewing cases before they had finalised their criteria. We have also come across cases of considerable delays
in paying the restitution and conditions being imposed on accepting the money.
What further developments are required to support the implementation of a national framework?
2.5 The attitude of NHS staV needs to be addressed so that continuing care is not seen as marginal to the
main concerns of the NHS meeting the acute sector performance targets. Training for all staV will be
required both within the NHS and staV in care homes and in social services departments. It should be rights
based, screening people in rather than screening them out. It should also recognise those situations where
improvement has been caused by the fact that the person is receiving the care that they need. Funding should
not be reduced if, without that level of care, there could be a deterioration. Once there is a national
framework there will also need to be careful consideration of education and information to the public. With
a national framework there is a role for the Department of Health to produce clear information for the
public. The development of a new national framework gives the opportunity to bring some clarity about
whether it is possible to draw a line between health and social care.
2.6 Recommendations
On policy:
— That both eligibility criteria and any assessment method are set on a national basis across the UK.
— That the Registered Nursing Care Contribution is revised as a matter of urgency as part of this
process.
— That any new national criteria should measure against the Coughlan quantity/ quality test and
ensure that care is free if the primary need is for health care.
— That there is full public consultation following Cabinet OYce guidelines.
— That in future documentation kept on patients in any setting, should have built into it a
consideration of that patient against the criteria for continuing NHS health care on at least a six
monthly basis. This should then trigger a full continuing care assessment if the individual is nearing
the criteria.
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— That the Department of Health considers the position of people who are already in care homes
and who do not want to move just because of their change in status, or where a move would be
detrimental to them. Changes to the legislation may be needed to allow greater flexibility to enable
individuals to receive the care they need without having to move.
— The Healthcare Commission should introduce performance indicators and monitor this aspect of
the NHS responsibilities.
— Funding should be adequate to ensure that the NHS can properly meet all its responsibilities
including continuing care.
On process:
— That the Department of Health monitor compliance with the Delayed Discharge (Continuing
Care) Directions to ensure that no patient leaves hospital to go into a home that provides nursing
care without first having had a continuing care assessment and then, if necessary an RNCC
assessment. If a patient does not receive a continuing NHS health care assessment, clear reasons
for not undertaking such an assessment should be given to the patient and their carers and
recorded on the case file.
— That the Department of Health monitor compliance with the Continuing Care (NHS
Responsibilities) Directions for individuals in other settings to ensure that individuals needs for
continuing NHS health care are picked up promptly wherever they live.
— Review panels should be open to the complainant, or their carers, to make representations in
written form and in person and it be clear what evidence has been scrutinised.
— In view of the complex nature of the process advocates should be made available to support those
who disagree with continuing care decisions and who wish to use the review process.
— Review cases should be dealt with within certain time limits and the process be streamlined to avoid
excessive numbers of processes before being able to go to the Ombudsman.
— The Health Care Commission should fast track continuing care cases and should consider setting
up specialist teams to develop expertise in decision- making in continuing NHS health care cases.
In relation to past cases:
— That the Department of Health seek information from each SHA what measures it took to
advertise the fact of reviews and on what basis it decided which cases to review. In particular, it
should seek information about the basis of reviews in settings other than care homes providing
nursing, and whether reviews were undertaken where a person was funded by social services.
— That clear information should be produced by each SHA (and once there is national criteria by
the Department of Health), explaining the types of health need that would be likely to meet the
criteria for fully-funded NHS care, and to invite people to come forward if they think that at any
time since 1996 they, or their relative, may have met that criteria.
On training and information:
— That training of staV is rights based aimed at screening people in rather than screening them out,
and should counter the misperception that the NHS is no longer responsible for long term
health care.
— That staV in all relevant trusts and social services receive training so that they are always alert to
the possibility that a person, wherever they are, might be eligible for continuing NHS health care.
— That staV in care homes receive training to recognise when individuals may meet the criteria for
continuing NHS health care.
— That the Department of Health produce leaflets to explain who can get continuing NHS health
care, and SHAs produce leaflets about the review process and who to contact if you want to pursue
a review.
3. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
3.1 Although Age Concern welcomed the statement made by the Minister, “to develop a national
consistent approach to assessment for fully funded NHS continuing care”, it is still ambiguous. There is
already a national framework provided by the current guidance, but it is left to the 28 Strategic Health
Authorities to interpret this framework with their own guidance and equally problematic in our view, with
their own assessment tools.
3.2 In our view, the only way to begin to get a national consistent approach, and by national we would
consider that this should cover all four of the devolved administrations, would be to produce national
eligibility criteria which includes a national method of assessment. Both would need to be compliant with
the law and case law and not be unduly restrictive.
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3.3 We were concerned that the Minister in his statement said “all the current criteria are fair and legal”.
Although many of the criteria follow the wording of the 2001 guidance, which in itself was criticised by the
Ombudsman, some contain phrases that would appear to make it more restrictive than the guidance. For
instance, one set of criteria includes:
— “requirement for the constant attention of a qualified nurse and constant availability and access
to medical expertise 24 hours a day”;
— “existence of a high degree of dependency on nursing care by persons who have a condition that
fluctuates unpredictably and which without frequent and prompt intervention by access to a NHS
team might lead to death, deterioration or severe distress”; and
— “evidence of dementia, impaired capacity, mental ill health, confusion, challenging behaviour and
complex needs which cannot be managed in the community and requires care in a specialist nursing
home, and requires supervision of a consultant or members of the psychiatric multidisciplinary
team.”
3.4 All the above terms apply restrictions that are beyond those in HSC 2001/15. Even though the
guidance indicates that these are only examples and the lists are just to be utilized as a general guide, it gives
an impression of a level of health care needed that does not adequately reflect the quantity/quality test as
described in R v North and East Devon Health authority ex parte Coughlan.
3.5 Even if the criteria does not deviate from the wording of the national guidance, some assessment tools
may lead to further restrictions. Age Concern was recently sent a “threshold tool kit” where individuals were
scored. It stated that individuals may be the responsibility of the NHS if three or more of the domains have
a weighting of 100, or five or more of the domains have a weighting of 60 or more. The particular individual
who had suVered a serious stroke was denied continuing NHS health care having scored:
— 100 as she was unable to communicate even when prompted.
— 60 because she had a high level of cognitive impairment which requires specialist management to
reduce the risk.
— 50–60 because of erratic behaviour; shouts and screams at times most days needs management.
— 50 because she requires a hoist and is unable to assist or co-operate with transfers and/or
respositioning.
— 80 because of incontinence of faeces and has a catheter for incontinence of urine.
— 20 because she had medium risk of pressure sores.
— 60 because her medication needed monitoring by a qualified nurse because of the potential
instability of the medical condition.
— 50 because she needed PEG feeding, although could take diet at times.
Not surprisingly, her husband was unable to understand why his wife’s health needs were not considered
enough both in terms of quantity and quality to warrant being funded by the NHS. Interestingly, the toolkit
was titled “elderly and physical disabilities” which begs the question whether other client groups have a
diVerent measurement. Age Concern has seen draft assessment tools which seemed to have stricter hurdles to
obtain continuing care for older people, but that was in the early stages following the Ombudsman’s report.
3.6 Age Concern does not think that the continuing NHS health care criteria can be considered in
isolation. We consider that it is of paramount importance, when looking at a national consistent approach
to continuing NHS health care, that the Registered Nursing Care Contribution (RNCC) is also revised. The
criteria for the highest band is set at a level where neither Pamela Coughlan, nor the gentleman in the original
“Leeds Ombudsman case” would be likely to qualify (and indeed may have had diYculty in obtaining the
middle band). This has caused considerable confusion to health staV and the public.
3.7 The terms “complex, unpredictable, unstable, frequent intervention” appear in both sets of guidance.
The guidance on nursing care says that the use of similar terminology should not be confused with guidance
for continuing care, but it is impossible to see how it cannot be confused. The definition for the highest
band is:
“high needs for registered nursing care and have complex needs that require frequent mechanical,
technical and/or therapeutic interventions. They need frequent intervention by a registered nurse
throughout a 24 hour period, and their physical/mental health state will be unstable and/or
predictable.”
3.8 It is diYcult to see how such a person is not one whose primary needs are for health car, rather than
for accommodation and personal care. As such, they should qualify for continuing NHS health care. Yet
routinely such people are being assessed by registered nurses using their workbook, which contains
examples, as only needing the highest band of nursing rather than needing continuing NHS health care.
3.9 One of the examples in the workbook used by nurses is almost identical to a case in the Ombudsman’s
report of February 2003 which was about a woman who had several strokes and as a result had no speech,
was deaf, was partially sighted and had little comprehension, required PEG feeding, almost completely
immobile and doubly incontinent.
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As the Ombudsman pointed out in that case “I cannot see that any authority could reasonably conclude
that her need for nursing care was merely incidental or ancillary to the provision of accommodation, or of
a nature one could expect social services to provide”. Yet a nurse using the Department of Health workbook
would be likely only to consider the highest rate band of RNCC.
3.10 Lastly, any single national eligibility criteria must have a full public consultation following the
Cabinet OYce guidelines for the way in which it is conducted. Both the 2001 Continuing Care Guidance
and the “Free nursing care guidance” suVered because there was little consultation with a broad spectrum
of stakeholders. We realize that there will be an amount of work relating both to the criteria and practice
and we hope that stakeholders will be involved at an early stage in the development of more consistent
approach to assessment. Any new criteria/assessment method that may emerge from this exercise should
measure against the Coughlan quantity/quality test and whether care would be free to all those whose
primary need is for health care. Once there is national criteria we would hope that never again would a
relative be told unprompted (as was reported to us recently) by a senior member of NHS staV “Pam
Coughlan would not have got continuing care in this hospital.”
3.11 Recommendations:
— That both eligibility criteria and any assessment tools are set on a national basis across the UK.
— That the registered Nursing Care Contribution is revised as a matter of urgency as part of this
process.
— That there is full public consultation following Cabinet OYce guidelines.
— That any new national criteria should measure against the Coughlan quantity/quality test and
ensure that care is free to all those whose primary need is for health care.
4. How the Changes will Build on the Work already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
4.1 We are aware that having just 28 criteria has represented some improvement from the previous 95
criteria, although as we have stated above, we have concerns about some of the current criteria and the way
they are implemented. In this section we wish to concentrate on our experience of how the current
administration of the system is working, from the enquiries we receive. We are aware of course that the
process can work smoothly, and that some people appear to be able to access continuing NHS health care
without having to request it, based on an assessment undertaken while the person is in hospital. However,
from the enquiries we receive it would appear that there are some systemic problems across the board in the
current administration of assessments for continuing NHS health care. These will need to be addressed if
there are to be improvements in the way cases are handled.
Establishing whether the person meets the criteria
4.2 We have very little confidence as to whether continuing care assessments are carried out according
to the Directions when a person is in hospital. We get numerous enquiries from relatives of people leaving
hospital and moving into a care home providing nursing care. When asked if their relative has had either a
continuing care assessment or an RNCC assessment the answer is usually either no, or they don’t know. All
they have been told by the hospital is that they will need to find a care home with nursing and they will have
to pay for it. One case clearly highlights this. A relative went to visit his wife, having been previously told
that he would have to find a nursing home because of “bed blocking”. He was in the process of looking for
one, but had not yet decided. He had been unable to find out anything about who would help with funding.
On that day, 28 September 2004, he found that his wife had been made ready to leave and there was an
ambulance waiting to take her to a nursing home. He was told he would have to pay for the care home. A
letter to a range of hospital staV dated 21 September started the assessment for continuing NHS care.
However, the majority of the hospital staV did not complete their assessments until the end of October,
nearly a month after the patient had left the hospital, and the rest were completed in November. Her
husband was informed of the decision not to grant continuing NHS health care on 10 December 2004. Some
time later he was informed that she would receive £125 towards her nursing costs.
4.3 We are concerned that the situation may be even worse if the patient is not in hospital where at least
the staV should be geared up to making decisions about discharge and follow practices which are compliant
with the Directions and discharge guidance. There seems to be little opportunity for review of cases from
the point of view of whether a person’s condition has worsened to the extent that they now fall within
continuing NHS health care criteria. If a person is in their own home, or in residential care, or in a nursing
home, it appears that the level of the NHS responsibility is only considered if the person specifically asks
for a continuing NHS health care assessment.
4.4 NHS nurses undertaking the RNCC review in a care home providing nursing care are, in theory,
supposed to consider first whether the person fits the continuing care criteria, although anecdotally we hear
this is not always considered. Those in residential care or at home will largely be reliant on GPs and district
nurses to pick up whether they should be fully-funded by the NHS. In spite of the guidance saying that where
a person lives is not determinative, there does not appear to be much awareness of continuing NHS health
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care other than in nursing homes or hospital. All relevant staV who are caring for people in all settings should
be alert to the possibility of eligibility for continuing NHS health care. In our view, it is not something that
people should have to ask for, but should be picked up on routine health checks, or when NHS personnel
have been called in to assist with a person’s condition.
4.5 This should also apply to social work staV who should be responsible for alerting the NHS to people
who might qualify. This is especially important where a person is in residential care or receiving care in their
own home, but in fact all the care should be the responsibility of the NHS because the needs are all health
needs no matter who provides the care.
4.6 Care staV in care homes should also have a role to play, as often a person’s condition may deteriorate
over time and they start to fall within the criteria. We would hope as well, over time that it might become
a registration requirement for care homes to alert the NHS if they consider a person in their care might
qualify for fully funded NHS care based on national criteria.
The review process
4.7 The process of challenging continuing NHS health care decisions remains one that only the stouthearted can face. We have serious concerns about the system which put so many hurdles in the way of
obtaining a conclusion which is clear and gives individuals enough information to know whether it is worth
taking a challenge forward. The initial hurdles can so often start with what relatives are first told by staV.
We hear of many cases where the person is told that it is not even worth thinking about continuing NHS
health care, such as “it is only for palliative care”, “you have to be nearly dead to get it” “well you can ask but
you won’t get it as no one does,” “you don’t stand a chance unless you are on the highest band of nursing.” In
one case, a doctor told a relative that his mother had not lived long enough in the area to get continuing
NHS health care! These sorts of comments are reported to Age Concern so frequently that we have started
to call it the “fob-oV factor”. We rarely come across cases where relatives are totally unrealistic about who
should get continuing NHS health care, mostly their relatives have significant health needs.
4.8 Some SHAs have worked hard to produce clear leaflets explaining the right of review. Others seem
to be far less forthcoming. One relative was told recently firstly that she had no right to ask for an assessment,
it was for the discharge team to decide; that it was not practice to give relatives the criteria and assessment
tools and they were not sure if they were public; that there was no right to appeal and nobody had ever
appealed a decision as the hospital was never wrong; it was not relevant to know how many people had got
continuing care—eventually it was admitted it was less than four from that hospital.
4.9 If there is a review it can be a lengthy and complex procedure. It appears that in many areas there is
an additional review panel at PCT level before getting to the SHA panel. The regulations and directions
only specify that there has to be a SHA panel to hear reviews. It can be seen as another hurdle to jump before
getting to the case considered by the SHA panel.
4.10 We have heard many diVerent reports about the nature of the panels. Some allow representations
from relatives and appear to accept a wide range of evidence. In one area, an Age Concern described the
review panel as “behind closed doors” with relatives not knowing what evidence has been considered and
the decision not giving any real reasons. In the report attached to this evidence, Age Concern Oxfordshire
raises concerns about the fact that only contemporaneous care notes are accepted (see Annex).
4.11 We often get reports of relatives only being told verbally of any decision by the panel. We consider
that SHAs and PCTs should take on board the comments made in the judgement The Queen on the
Application of Goldsmith and the London Borough of Wandsworth Community Care Law Reports, December
2004. This case looked in detail at the way a continuing care panel was conducted. SHAs should alter their
processes to ensure that there are proper records of discussions and recommendations, that only the relevant
issues are considered (in this case cost had been raised), and that relatives should be allowed to make their
representations in person if they wish to.
4.12 If the person is unhappy with the decision made by the SHA panel they then have to start again
through the complaints process, by firstly making a formal complaint to the NHS body for local resolution,
then if that does not succeed, they can make a formal complaint (since July 2004) to the Healthcare
Commission. As yet it is too early to make comments on the way complaints about continuing care decisions
are handled. We do though have grave fears about possible delays due to the backlog of some 4000 cases,
and the way continuing care cases may be prioritised. We also have concerns about how quickly the
commission will be able to build up expertise in handling complaints about decisions on continuing NHS
health care. In many ways the Healthcare Commission handling complaints on a national basis may well
need to do what the Ombudsman has done and have a specialist team to deal with continuing care
complaints.
4.13 It is only after going though all these stages that the person may at last be able to take their complaint
to the Ombudsman. By the very nature that these cases involve people who have serious health problems,
there should be some way of simplifying this cumbersome system to allow much quicker complaint
resolution.
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4.14 Recommendations
— That the Department of Health monitor compliance with the Directions to ensure that no patient
leaves hospital to go into a home that provides nursing care without first having had a continuing
care assessment and then, if necessary, an RNCC assessment. If a patient does not receive a
continuing care assessment clear reasons for not undertaking such an assessment should be given
to the patient and their carers and recorded on the case file.
— That the Department of Health monitor compliance with the Continuing Care (NHS
Responsibilities) Directions 2004 for individuals in other setting to ensure that their needs for
continuing NHS health care are picked up promptly wherever they live.
— That staV in all relevant trusts and social services receive training so that they are always alert to
the possibility that a person wherever they are, might be eligible for continuing NHS health care.
— That it should in time be a regulatory requirement that care staV in care homes regularly undertake
assessments against the national criteria and alert the NHS about residents who appear to be
nearing the criteria.
— That the Department of Health produce leaflets to explain who can get continuing NHS health
care, and SHAs produce leaflets about the review process and who to contact if you want to pursue
a review.
— Review panels should be open to the complainant, or their carers, to make representations in
written form and in person and it be clear what evidence has been scrutinised.
— In view of the complex nature of the process, advocates should be made available to support those
who disagree with continuing care decisions and who wish to use the review process.
— Review cases should be dealt with within certain time limits and the process be streamlined to avoid
excessive numbers of processes before being able to go to the Ombudsman.
— The Healthcare Commission should fast track continuing care cases and should consider setting
up specialist teams to develop expertise in decision- making in continuing care cases.
5. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for their Long Term Care
5.1 Many of the problems of the process described above have also been in evidence for the retrospective
reviews, but with some additional areas of concern. Both the report commissioned by the Department of
Health into nine SHAs and the follow-up report by the Health Service Ombudsman have highlighted many
of the concerns that we have about the way the reviews were handled. We appreciate the enormously diYcult
job that SHAs were facing, having to both develop convergent criteria across the SHA and to deal with all
the reviews.
5.2 We have appended a report from the Independent Caseworker at Age Concern Oxfordshire which
gives details about the retrospective review process in that area and the work that was undertaken by Age
Concern in supporting some 100 people with their cases.
5.3 Our main concern is the way that cases were found. We are certainly aware that in some areas
patients/relatives received communications “out of the blue” to say that their case would be investigated
which indicated a proactive approach. In other areas though it appears much more that the only cases
considered were those where the relative approached the SHA. A note from a board meeting of Thames
Valley SHA reflects this diVerence in approach.
“The proactive approach being taken by TVSHA to identify these ‘long list’ clients appears to be
in contrast to the approach being taken by some SHAs elsewhere in the country, and where the
only cases being reviewed are those where the client or their representative have approached the
SHA (or PCT) requesting a review. It also appears that some SHAs/PCTs only investigate cases
where the client or their representative provides the documented file information (copies of nursing
home notes, GP notes etc) to support the appeal”. Board Paper 40/04 July 2004.
5.4 We had reports that some areas would only automatically review those individuals who were on the
highest band of nursing. One care home owner who helped her residents apply for continuing NHS health
care found that the relatives were told they would not be eligible as they were in a residential care home
rather than a nursing home (of the three who applied one has now had a favourable ruling). We suspect
there may have been even less ability to find cases where people were being cared for at home. We therefore
have grave concerns which are reflected in the report on the 9 SHAs that there may still be a need to seek
out cases. We share worries that those with assertive relatives will have had an advantage over those who
either do not have relatives, or whose relatives did not feel able to take the case forward.
5.5 Age Concern also came across a few cases where relatives were considering asking for a review but
in the end decided not to take matters forward as they had been told that if they got continuing NHS health
care then the person would have to move to another home, either because the home the person was in was
not one with which the NHS contracted locally, or because it was more expensive than the NHS was
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prepared to meet. In some cases, we found that where the NHS had agreed to provide continuing NHS
health care there were problems if the home was dearer than the price the NHS was prepared to pay. In some
cases a certain amount of ingenuity was needed in order to allow the resident to remain in the home.
5.6 As reflected in the report commissioned by the Department of Health we had many queries about the
evidence that the SHAs were prepared to accept. Some appeared only to accept what had been written at
the time, so even if there were nurses who remembered the patient well and could have added to the full
picture this was not accepted. In some cases relatives gave up because there were no notes because of the
home closing or records missing. We also came across situations where the notes within the care home left
a lot to be desired and hope that this exercise will lead to an improvement in record keeping across the board.
5.7 In some areas it appears there was a much more proactive approach taken by social services than in
other areas in relation to clients who had been partly funded by social services. In part, it seems there was
the mistaken belief that it did not really make any diVerence to the individual because they had obtained
funding from social services. However, this neglected the fact that individuals had been charged out of their
capital if they had above a certain amount of capital, and all of their income was taken into account. As this
income could have been made up if a combination of benefits and occupational pensions, the person could
still have lost out on a considerable amount.
5.8 Throughout the time that most of the reviews were being carried out, there were still discussions going
on in many areas about the criteria and assessment tools. Even as recently as January 2005, relatives in two
areas have been given criteria or assessment tools that are headed “Draft-Pilot” and “Revised”. This does
not give relatives confidence that the goalposts might not change again, or that the SHA is completely happy
with their method of assessment. On one occasion, we were sent an assessment by a relative using forms that
did not match the most up to date criteria and tools being used (which were on the website), so it would
appear that there may have been some occasions when staV undertaking the assessments were not aware of
changes as they were happening. We are aware of one area still consulting on its criteria, so it is diYcult to
see how they can have undertaken all their reviews on criteria that is still in the process of being changed.
5.9 Even when people have been told that they have been awarded a retrospective payment there have
been considerable delays before the payment was made. We are also concerned about the way some SHAs
have imposed conditions on relatives before they send a cheque for recompense. We have heard of several
cases where one of the conditions was that they should treat the payment in confidence and not inform
anyone other than their legal advisers. This implies that the SHA wants to keep who gets continuing NHS
health care a secret, and debar relatives from sharing the fact that they have been successful—and thus
perhaps encouraging others who are in a similar position. We appreciate that in the business world there
may be reasons for wanting to avoid any detriment that may come from having made an error but this is
not the case with public authorities. There have also been terms such as full and final settlement and a clause
that would debar the relative from seeking to claim for periods that have not been agreed. The problem that
leaves the resident with is whether not to accept the amount oVered (which may run into the tens of
thousands) and start the whole lengthy process for the part that still has not been agreed, and perhaps even
the risk of losing what has been granted.
5.10 Recommendations
— That the Department of Health seeks information from each SHA regarding what measures it took
to advertise the fact of reviews and on what basis it decided which cases to review. In particular,
it should seek information about the basis of reviews in settings other than care homes providing
nursing, and whether reviews were undertaken where a person was funded by social services.
— That clear information should be produced by each SHA (and once there is national criteria by
the Department of Health), explaining the types of health need that would be likely to meet the
criteria for fully-funded NHS care, and to invite people to come forward if they think that at any
time since 1996 they, or their relative, may have met that criteria.
— That the Department of Health considers the position of people who are already in care homes
and who do not want to move just because of their change in status, or where a move would be
detrimental to them and, if necessary, make changes to the legislation and the care standards that
allows greater flexibility, to enable individuals to receive the care they need without having to
move.
— That in future any documentation kept on patients in whatever setting, on at least a six monthly
basis, should have built into it a consideration of that patient against the criteria for continuing
NHS health care, in addition to the day to day care management hand over notes. This should
then trigger a full continuing care assessment if the individual is nearing the criteria.
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6. What Further Developments are Required to Support the Implementation of a National
Framework
6.1 In addition to the above recommendations that we have suggested to the Committee, we consider that
the following will be essential in developing a national framework.
6.2 There needs to be a major consideration of the way that the NHS has evolved and withdrawn from
providing long term health care. It was very telling that in the report commissioned by the Department of
Health it was stated that the raised profile of continuing care “could be short lived and that continuing care
remained marginal to the concerns of SHAs, which are dominated by performance management in respect
of the acute hospital sector”. This attitude needs to be addressed and continuing NHS health care be seen
as an integral part of the National Health Service. Undertaking continuing NHS health care assessments is
not just an add on but should be seen as a way to ensure that people receive their entitlements to free NHS
care, but also to the quality/quantity of the care that they need. The Healthcare Commission should
introduce performance indicators and monitor this aspect of the NHS responsibilities. Funding should be
adequate to ensure that the NHS can properly meet all its responsibilities including continuing care.
6.3 We have stated above there needs to be a well thought out training programme of all staV who are
involved with individuals, especially those who might be in the position to pick up that a person should be
considered to be the full responsibility of the NHS. This will include a wide range of staV within all parts of
the NHS, within care homes and within social services. Training programmes should be essentially rights
based and geared to screening people in rather than screening people out. It also needs to recognise that
where the health care needs are being met the person may improve, but this should not necessarily be a
reason to withdraw funding, because without that provision of health care the person’s condition may well
deteriorate.
6.4 We also hope that the work to take the national criteria forward which involves a number of streams
will include a wide range of stakeholders including users and representatives of users, and representatives
of the legal profession who have been involved in challenging the criteria and decision making. Given the
comments made about the national criteria both in the Courts and by the Ombudsman, it is essential that
the third attempt to set the boundaries between health and social care is on that can be widely accepted.
6.5 We realise the Health Select Committee is only inquiring into NHS continuing care, but it does raise
the whole issue of health care being free and social care being paid for, and all the diYculties of the health/
care divide. We hope that this exercise may again bring into focus the virtual impossibility of making any
sensible division between health and personal care and open up the debate of whether personal care should
be free.
6.6 We will be willing to give oral evidence should the Committee so wish.
February 2005
Annex
Evidence from Age Concern Oxfordshire to the Health Select Committee
1. Introduction
1.1 This report has been compiled by Age Concern Oxfordshire. Age Concern Oxfordshire was funded
by Thames Valley Strategic Health Authority (TVHA) to provide independent support and advice to
Oxfordshire clients going through the Retrospective review of 100% NHS Continuing Care funding
decisions.
1.2 For the past 18 months an adviser has been on a dedicated contract to fulfil this role. To date the
adviser has worked with over 100 clients in Oxfordshire who have been having their cases reviewed.
1.3 StaV at Age Concern Oxfordshire and TVHA have worked very closely together over the past 18
months to ensure that a) the review process was fair and equitable to all clients who may have been wrongly
denied funding and b) that clients (and their families) were given the best possible opportunity to present
their “case” for assessment.
1.4 The adviser was allowed full access to client records held by TVHA as well as TVHA’s own records
of individual reviews.
1.5 This report therefore only pertains to experience and facts of the processes in Oxfordshire.
1.6 Assistance given to clients included:
— Providing a full explanation to the clients about the review process and background of the review.
— In depth explanation about 100% NHS continuing care funding and how it fitted with RNCC and
other forms of funding for care.
— Assisting clients to obtain further evidence to establish their health care needs.
— Helping clients to prepare reports, responding to the reassessment of their case by the TVHA, to
be submitted alongside the TVHA report to the panel for the final decision.
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— Undertaking informal challenges of decisions, enabling the TVHA to reassess the case based on
further evidence, or other subject of the challenge. This ensured that there were no further matters
or evidence outstanding when the case went to the Panel for the final decision.
— Assisting clients in gathering acceptable evidence of care charges paid out in order to quantify
restitution payment.
— Challenging issues of restitution payments and content of waiver statements. Investigating and
explaining the aVects of welfare benefits on restitution and vice versa.
— Corresponding with the Health Ombudsman to obtain advice about policies being applied by
TVHA where Age Concern believed that the policy was inconsistent with underlying intention of
the Ombudsman’s report.
— Assisting some clients who wished to take their case to the Ombudsman. Most of these cases have
yet to receive a final outcome.
1.7 The provision of an independent advice and support service has proved invaluable in Oxfordshire,
with enormous benefits to both the TVHA and the clients. A number of clients would not have received
restitution without help from the independent source.
2. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for their Long-term Care
2.1 Whilst the review of past funding decisions has gone some way to address the needs of those
previously denied funding, not everyone who has been wrongly denied funding has been awarded or received
restitution.
2.2 Only contemporaneous written evidence is accepted as evidence by the reviewers. Information
provided today to interpret, back up, explain or clarify notes written at the time, even if provided by the
health care professionals who were giving the care at the time, is generally disregarded in the review. This
has proved particularly frustrating where the standard of care notes that have been used as evidence for the
review have been scanty using standard phrases, eg “all care given” to describe a range of nursing care and
intervention that has been provided to the individual; “daughter took her for a walk” with no mention of
the fact that the lady in question was in a wheelchair. Care home staV have explained that because the notes
were available to be read by family members, this aVected what notes were written at the time as a fully
detailed explanation of the care provided and reason for it would have upset family members if they read
the notes when they visited.
2.3 The interpretation of care home notes is often taken too literally by the reviewers. For example an
entry by a nurse stating that “Mr X was fine today” may be interpreted to mean that Mr X had no real
nursing needs that day, in fact the term “fine” is very subjective. “Fine” for Mr X on that day may have
meant full nursing care and intervention of a very complex and intense nature but nothing “out of the
ordinary” for him.
2.4 Written evidence has not always been available due to a number of reasons:
— 60,000 GP patient records held in a store in Southampton being destroyed by a fire and therefore
unable to be used as evidence.
— Care homes having closed down and their records no longer being available.
— A generally poor standard of care home notes, only providing general information see 2.1.
2.5 Reviews were only made of clients who requested a review. However, due to lack of awareness and
understanding in the public arena and lack of accurate publicity about the review, many people who have
paid for care themselves may not have come forward to request that their case be reviewed and will have
fallen through the net.
2.5 Reviews were originally to be made of all clients who had come into contact with Social and
Healthcare staV, however, that would have included a further 1,500 clients. Due to pressures on TVHA to
complete the review in a shorter timescale these plans were dropped in June 2004.
2.6 Payments are only made up to October 2001. From October 2001, when RNC assessments started,
TVHA believed anyone who was entitled to 100% NHS continuing care would have been identified by the
new RNCC assessments and fairly assessed for NHS Continuing Care. The service therefore had to assist
some clients who considered that they had been wrongly assessed to be further considered against the
current criteria.
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2.7 When Restitution Payments are made, interest is only calculated up to the point that the person died,
not to the point at which the decision was made to award funding. The individual can have died at any point
up until October 2001, thus leaving many people with no interest for the years between then and now.
2.8 Interest rate is given at RPI only. This is not a real representation of the interest that would have
accrued in a bank account, or reflected in the rise of house prices over the period (many people who were
wrongly assessed had to sell their houses to pay for their care) The rate of interest given generally in the
County Courts is considerably higher. Those whose money is held by the Court of Protection would have
received a higher rate of interest.
2.9 Both of these above points have caused considerable annoyance and anger to clients as they do not
feel that they have been fairly reimbursed. However, having gone through such a long and laborious process,
no one has felt able to challenge this further through the courts.
3. What Further Developments are Required to Support the Implementation of a National
Framework
3.1 Easy to understand information should be available covering all the financial help with care costs that
people can receive. This should include RNCC, NHS Continuing Care, ILF and Social and Healthcare
contribution. There is very little comprehensive literature available about how all of these funding streams
fit together, creating great confusion amongst the public.
3.2 Appropriate training should be given to all Social and Health Care professionals, care home staV,
and health staV about 100% NHS Continuing Care, who could be eligible for it, how to refer for an
assessment and who decides eligibility. Professionals providing inaccurate or partial information is
misleading and confusing to members of the public at a very emotional and stressful time.
3.3 Guidance as to the use of terminology and language. Many people were told by Social and Health
Care staV that their relatives had to go into a nursing home because they needed 24 hour care. They have
then become very confused and angry when they have been told that their relative does not qualify for 100%
NHS Continuing care, which appears to be a contradiction to what they were told by the Social and Health
Care StaV.
3.4 Clear explanations by Social and Health care staV about the full range of options available to
individuals for their care. This must include the option of being cared for at home and receiving 100% NHS
Continuing Care funding.
3.5 National guidance to care homes about the quality and quantity of client care notes. These have been
particularly inconsistent and have often lead to people being denied funding that they should be entitled to.
3.6 Thorough and nationally consistent assessor training on carrying out the assessment and on how to
write the report to detail all the individuals care needs. There should also be guidance and a framework for
writing a report for the decisions makers. We know of cases in Oxfordshire where the assessors report to
the local decision making panel has been “This person should get 100% funding” without detailing the
reasoning or evidence behind the opinion. As there was not adequate evidence provided to the decision
makers, the funding was initially turned down.
3.7 Full training for care staV to enable them to accurately respond to questions from assessors. At a
continuing care assessment at which we were present, the relative of the elderly person told the assessor that
her mother couldn’t move or turn on her own. The assessor asked a nurse who was nearby who said that
the patient could move on her own. At the insistence of the relative a second nurse was asked who agreed
with the relative that even though the patient could wiggle her toes she couldn’t move on her own, or even
help the nurses to turn her.
3.8 Provision of independent advice and support to individuals to ensure that they have a full
understanding of the Continuing Care assessment process and eligibility criteria, and have fully supported
opportunity to put their own/their relatives case to the decision makers.
3.9 Currently the award for eligibility for 100% NHS Continuing Care is made by a local panel that is
made up of the Head of Continuing Care, a senior social and health care manager and a senior nurse from
the Mental Health Trust. If the award is denied there is no right of appeal or independent review of the
quality of the decision. You can only appeal to an independent panel if you believe the process has been
improperly followed or the criteria improperly applied. A truly independent appeal panel would ensure
transparency, greatly improve public confidence in the decisions being made, provide an independent check
of the quality of decisions made and could ensure consistency of decisions across health authorities.
3.10 Systematic procedures need to be put into place to ensure that care home staV are able to identify
clients whose health condition is deteriorating, so that they know when, how and where to refer to in order
to instigate a 100% NHS funding assessment. Similar processes are also needed for Social and Health Care
staV to be able to identify a clients’ potential eligibility for 100% NHS funding at their annual review.
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Memorandum by the Alzheimer’s Society (CC 26)
1. Summary
1.1 The Alzheimer’s Society welcomes the announcement of a national approach to NHS continuing
care. As the disease progresses, people with dementia will develop a complex range of both physical and
psychological symptoms. Appropriate and equitable access to good quality, NHS funded care is hugely
important for this group.
1.2 The Alzheimer’s Society has consistently called for national eligibility criteria for NHS continuing
care, which should be backed up by training and support for those carrying out assessments and applying
the criteria. The national approach is a step forward, but must be seen in the context of a decrease in the
specifically commissioned continuing care services across England.
1.3 The review by Strategic Health Authorities of their criteria and attempts to identify those who may
have been incorrectly assessed was welcomed by the Society, but we believe many people with dementia
continue to be excluded from NHS continuing care. The reasons why people with dementia are often
unfairly excluded from receiving NHS continuing care include:
— Assessments emphasise physical care.
— People making assessments for continuing care are not qualified to recognise mental health needs.
— People in the late stages of dementia are classed as stable and predictable.
— It is diYcult to assess the terminal stage of dementia.
— Dementia care is regarded as “social care”.
1.4 The Alzheimer’s Society has supported hundreds of people who have asked for reviews of continuing
care cases. The Society has serious misgivings about the process of reviewing cases which has been
underway. These include:
— Access to information about the availability of continuing care and how to get an assessment is
being restricted.
— The Society questions whether following the initial stage of the review process, there are ongoing
attempts to identify people who may be eligible for NHS continuing care, particularly among those
living in care homes and without relatives.
— Reviews are taking a long time.
— Review panels are often not qualified to make clinical decisions and have limited access to records.
— Independent review panels are often not independent. We have been told of a number of instances
where primary care trust financial directors sit on continuing care panels, which is not acceptable.
— Carers are being told they cannot attend independent review panels.
1.5 While we welcome the announcement of a national framework with clearer national guidance, we
believe that the national guidance needs to be accompanied by a programme of work to further encourage
equitable access. Without this, the government’s policy on who is entitled to continuing NHS health care
will remain discriminatory and inconsistent.
1.6 The work needs to include training for those performing assessments for continuing care to ensure
better assessments and decision making.
1.7 Criteria need to be clear and unambiguous so it is easier for carers to understand whether their loved
one is eligible.
1.8 There are frequent breakdowns in care arrangements when the responsibility transfers between social
service and the NHS. There need to be better systems in place locally to ensure that this does not happen.
2. Introduction
2.1 The Alzheimer’s Society is the UK’s leading care and research charity for people with dementia, their
families and carers. The Alzheimer’s Society has over 25,000 members and works through a network of over
250 branches and support groups. It provides information and support for people with any form of dementia
and their carers through its publications, helplines, website and local network. It advises professionals, runs
quality care services and campaigns for improved health and social care and greater public understanding
of dementia. The Society funds an innovative programme of biomedical and social research in the areas of
cause, cure and care.
2.2 The Society welcomes the Health Select Committee’s inquiry. Since the report of the Health Service
Ombudsman in February 2003 the Alzheimer’s Society has dealt with thousands of enquiries about
eligibility for continuing NHS health care. The experience of people applying for continuing care has
strengthened our view that the current system for determining who is entitled to fully funded NHS care
discriminates against people with mental health conditions.
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2.3 Access to good quality, NHS funded care is hugely important for people with dementia. In the later
stages of dementia, people will lose the ability to walk, to feed themselves, to communicate verbally, and
often become doubly incontinent. People with dementia may also experience behavioural and psychological
symptoms, for example hallucinations, extreme anxiety and sometimes aggression, particularly when they
do not understand what is going on around them. This vulnerable group require a good package specialist
skilled care, which meets these complex needs.
2.4 Because of the way dementia care is funded many people are paying large amounts of money for their
care. As the disease progresses most people with dementia will eventually have to move to a care home,
which can cost as much as £90,000 a year. Up to 75% of care home residents have some form of dementia.
Furthermore, because of the lack of care homes able to provide specialist dementia care, people are paying
for care that does not meet the individual’s needs. Not all people with dementia will eventually require NHS
continuing care, but for those whose health needs meet the eligibility criteria, it is hugely important that
access to a fully funded, quality package of care that meets their needs is straightforward and consistent
around the country.
2.5 In this briefing we seek to document the problems that people with dementia and their carers continue
to face in accessing NHS continuing care. We have dealt with each of the four areas identified in the terms
of reference of the inquiry.
— Firstly we give our response to the Ministerial statement and look at the context in which access
to continuing care should be viewed.
— We then go on to look at what changes are required beyond the national approach to assessment,
in particular how to address the problems people with dementia have in accessing NHS
continuing care.
— The problems which people going through the review process have faced are then discussed.
— Finally we look at what further developments are required to create an equitable, consistent
approach to continuing care.
3. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
3.1 The Alzheimer’s Society has consistently called for national eligibility criteria for NHS continuing
care and believes the development of a national approach to assessment for fully funded NHS care is a
positive step forward. We agree that national guidance would improve equity in access to NHS continuing
care, but believe that more fundamental problems exist. For example, the pressure to keep continuing care
budgets down and the limited availability of suitable continuing care places for older people create a system
with inbuilt incentives not to assess someone as “continuing care”. The review of SHA criteria, triggered by
the Ombudsman’s report, has also failed to look at assessment tools for continuing care and the Alzheimer’s
Society believes that as a result they may not be Coughlan compliant or legal.
3.2 Putting NHS continuing care in context
3.2.1 Recent problems in accessing NHS continuing care need be understood in the context of an ongoing
reduction in specifically commissioned continuing care services across England. In particular there has been
a trend over the past 15 years for NHS trusts to close continuing care wards. Clinicians have told us that
decisions by NHS trusts to close continuing care wards have been driven by cost rather than need. The result
of this trend is that in some areas of the country there is no continuing care provision at all, while in others
provision is seriously depleted.
3.2.2 The reduction in NHS continuing care provided in acute wards means that in many places the
responsibility for caring for people with serious continuing care needs has moved to independent sector care
homes, which are often not skilled or equipped to care for them.
3.2.3 While this trend has been developing, the number of care home places for people with serious mental
health problems has been falling. This is despite evidence that people with dementia in the later stages are
living longer than they have before which would tend to support the requirement for increased provision of
continuing care places.
4. How the Changes will Build on the Work already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
4.1 The Health Service Ombudsman identified a number of health authorities who had wrongly applied
the NHS continuing care criteria in her February 2003 report. In particular, she argued that health
authorities were applying the criteria too strictly and as a result were probably excluding people who should
be eligible for continuing care. The Alzheimer’s Society believes that despite the review of criteria which has
taken place, many people with dementia continue to be excluded from continuing care. We have argued that
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national criteria are necessary to make access more equitable and the development of a national approach
to assessment is welcomed, but we feel specific work will be necessary to ensure that criteria and methods
of assessment do not exclude people with dementia.
4.2 People with dementia have particular diYculty in accessing NHS continuing care
NHS continuing care is provided irrespective of a person’s condition and is based solely on their needs.
People with dementia are as entitled to fully funded NHS continuing care as those with other
conditions if they meet local eligibility criteria.
Department of Health, 2004
4.2.1 Despite the Department of Health’s commitment that eligibility is not based on diagnosis, we have
found that people with a diagnosis of dementia have frequently been excluded from continuing care funding.
The panel could find no evidence to indicate that X has any complex, intense or unpredictable health
care needs and her health care is being managed by staV at the nursing home without additional
support from health profs (I appealed—wife is now getting care home fees in full and a refund of
£66,000)”
Carer
4.2.2 There are a number of reasons why people with dementia are often unfairly excluded from receiving
NHS continuing care. These include:
— Assessments emphasise physical care.
— People making assessments for continuing care are not qualified to recognise mental health needs.
— People in the late stages of dementia are classed as stable and predictable.
— It is diYcult to assess the terminal stage of dementia.
— Dementia care is regarded as “social care”.
4.3 Assessments emphasise physical care
4.3.1 Assessments for continuing care tend to emphasise physical care and ignore psychological needs.
In spite of recent guidance which makes clear that mental health needs should be taken into account, we
continue to hear from carers about the lack of awareness of mental health problems.
“The whole assessment process placed little focus on the psychological health and needs of my wife.”
Carer
“I asked the district nurse if my mother might be eligible or continuing care and she said: ‘No she
won’t. Unless she has tubes sticking out what every orifice or is dying in a hospice she won’t meet the
criteria.’”
Carer
4.3.2 The Health Service Ombudsman’s report into the Pointon case in 2004 highlighted the fact that in
that case not enough emphasis had been put upon the psychological and mental health means of Malcolm
Pointon, who has Alzheimer’s disease. In our experience, assessments for continuing NHS care typically do
not take into account people’s mental health and/or psychological needs. Instead, they focus on the physical
aspects of care and whether care comes from specific health care professionals.
4.3.3 There has been little recognition of the mental health care that people with dementia need. Helping
someone to cope with the psychological and emotional impact of dementia is a skilled part of health care
but has not been recognised as such in assessments for continuing NHS health care.
4.3.4 Health professionals often argue that once a person with dementia has become too ill to display
behaviour that is diYcult to manage, they no longer have any psychological needs. This was not accepted in
the case in the Pointon investigation. When assessing someone’s eligibility for continuing care psychological
factors need to be included in the assessment. For instance, does the person with dementia have panic attacks
or fits? How do these aVect his/her needs? Does the person forget to eat unless they are carefully persuaded?
Is s/he easily frightened and do everyday care tasks have to be carried out in particular ways to take account
of psychological factors?
4.4 People making assessments for continuing care are not qualified to recognise mental health needs
“The nurse doing the assessment did not seem to consider psychological aspects of my husband’s care.
Her form seemed very limited.”
Carer
4.4.1 Evidence from continuing care assessments and discussions we have had with nurses show that the
health care professionals assessing people for continuing care are often not trained in dementia care and in
particular feel inadequately equipped to assess mental health needs. Many of the written assessments for
continuing care which we have seen make no mention of the psychological aspects of care which someone
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with dementia needs to have considered as part of their care package. We support the view of the Royal
College of Nursing that some nurses need more training and support to be able to adequately assess the
continuing care needs of people with serious medical conditions.
4.5 People in the late stages of dementia are classed as stable and predictable
“My mother is in the late stages of Alzheimer’s disease. She cannot communicate, is doubly
incontinent, diabetic, and is gradually getting worse and worse. However, we have been told that her
condition is stable and predictable and therefore she does not meet the continuing care criteria.”
Carer
“I am on an independent review panel for continuing care and I have been trying to convince the chair
of the panel that we should contact the Department of Health to talk about the fact that the criteria
themselves discriminate against people with dementia. But the rest of the panel think it is not our
business to rock the boat.”
Review panel member
People who may be eligible for fully funded NHS continuing care are likely to have complex needs,
and these needs will change over time. When an individual’s condition deteriorates their needs can
change significantly and they are likely to need a greater degree of intervention, as can be seen with
some of the behavioural problems which can be associated with the early stages of dementia. However,
it is also the case that people with other conditions may find their health care needs change so they
require less medical care and intervention.
Department of Health, October 2004
“My wife is at the end stage of Alzheimer’s. She has been reassessed with a subsequent loss of fully
funded care. . . she remains totally immobile, is doubly incontinent, unable to communicate intelligibly
and is bed ridden. A hoist is required and any movement causes great pain and discomfort. My wife
suVers both mental and physical stress during any process that requires her to be moved such as
frequent turning in any 24 hour period, washing and changing of continence pads.”
Carer
4.5.1 The criteria for continuing NHS health care place a strong emphasis on how stable a person’s
condition is. An individual may qualify for NHS continuing care if they have a “rapidly deteriorating or
unstable medical, physical or mental health condition and requires supervision by a member (or members)
of the multi-disciplinary team, such as the doctor, nurse, therapist or other NHS member of the team.”
Carers are frequently told that a relative with dementia does not meet NHS continuing care criteria because
their condition is stable.
4.5.2 The definition of stable is frequently based upon the amount of nursing care input that is required.
People with advanced dementia are told that their needs are predictable and, therefore, can be managed
without health care input beyond the occasional visit from the district nurse. The Alzheimer’s Society does
not regard this as an adequate level of care.
4.5.3 Alzheimer’s disease and most other forms of dementia are progressive, degenerative conditions. The
health of a person with dementia will decline, and ultimately require 24 hour care. However, contrary to
expectation, as an individual with dementia worsens, they become less likely to qualify for NHS continuing
care. This does not appear to make any sense. In fact, it reflects the lack of understanding of the specialist
care that is required to support people in late stages of dementia. People who have severe communication
problems, are incontinent, and cannot move unaided or eat by themselves may appear to be “easier” to care
for. But this is clearly a fallacy and really reflects the poor quality of care delivered to most.
4.5.4 The definitions of stability and predictability also create perverse incentives to provide
inappropriate care. For example, the Alzheimer’s Society is aware that people with dementia are regularly
over-sedated with anti-psychotic medication, to handle symptoms such as aggressive behaviour. People with
aggressive behaviour often meet the criteria for fully funded NHS care because they need a high level of
supervision. However, by sedating someone with dementia, the level of health care intervention required
falls, and someone no longer meets the criteria.
4.5.5 With good quality dementia care, from trained staV, a person will become less agitated and
distressed. When the person appears to be more settled, they lose their NHS continuing care funding. There
is little incentive to provide good care. In fact, the worst case scenario, at a time when risk of financial abuse
is high for people with dementia and care home costs so high, an abusive relative may see an incentive to
place a relative with dementia in poor care setting, and therefore maintain qualification for NHS funding.
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4.6 It is diYcult to assess the terminal stage of dementia
4.6.1 A person who is “in the final stages of a terminal illness and is likely to die in the near future” is
usually eligible for NHS continuing care. However, there is no clear definition of the palliative stage of
dementia. Shuster (2000) estimates that the end of life stage can last two-three years.1 This means that it is
diYcult to ascertain when the person with dementia is in the palliative stage. However, eligibility for
continuing care should be based on need rather than time until end of life.
4.7 Dementia care is regarded as “social care”
“The panel recognised that your mother does need an intense level of care but considered that majority
of the care needs are for personal care, not for health care.”
Letter from a review panel
4.7.1 Historically, much of the care received by people with dementia has been classed as social care. We
believe that this is largely a legacy of dementia being inaccurately understood to be “just old age”.
4.7.2 If someone with dementia needs help with washing, eating, dressing and using the toilet, this help
is typically provided by a care assistant from social services. People are means tested for the care they receive
from social services. The Alzheimer’s Society argues that this care is an essential part of the health care
package that someone with dementia receives, and that no one should be charged for it—it is a direct result
of a physical disease of the brain. If this care was provided by district nurses or other health care workers
it would not be charged for.
4.7.3 The government’s charging policy continues to be based on who provides the care (NHS or social
services) and not on what an individual’s care needs are. In particular, this practice discriminates against
people with dementia who live at home or in a residential care home.
4.7.4 People with dementia are failing assessments for continuing care because their care needs are classed
as “social care”. However, inadequate attention is being paid in assessments, and the care that is delivered,
to the psychological aspects of care. In relation to mobility, transferring a person with dementia using a hoist
is a more complex and diYcult operation than transferring a frail older person who understands what is
happening to them. Moving a person with dementia requires skilled care beyond the basic manual handling
training that you would expect from any professional care assistant.
5. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for their Longterm Care
5.1 The Alzheimer’s Society has been supporting hundreds of people who have asked for reviews of
continuing care cases. Our helpline has received thousands of enquiries about continuing care since the
report of the Health Service Ombudsman in February 2003. In response to both the level of interest and our
concern that the process for reviews is not transparent or easy to navigate the Society has also produced
a booklet entitled “When does the NHS pay for care?” Beyond the concerns previously expressed in this
memorandum, the Society also has serious misgivings about the process of reviewing cases which has been
underway.
5.2 Access to information about the availability of continuing care and how to get an assessment is being
restricted
“When I asked the PCT for a copy of the criteria, the person said, ‘But why do you want them?’ I was
told I had to put a request for a copy of the criteria in writing.”
Carer
“I rang up the local NHS trust and asked if I could have a copy of the continuing care criteria. They
said they were only available to the public on the internet.”
Carer
“They discouraged me from applying because my father cannot make an informed decision and I was
told it had to be done by him. Although I am a qualified nurse I have been unable to fathom the social
services local department. I feel they are guilty of depriving him appropriate care.”
Carer
5.2.1 There have been improvements in the past year in access to information about the availability of
continuing care. It is also true that because of the Directions on continuing care issued by the Department
of Health in 2004, more people leaving hospital are being assessed for fully funded continuing care.
However, the Alzheimer’s Society continues to receive regular reports of people being denied adequate
access to information and support. For example, it is not acceptable for criteria to only be available
electronically.
1
Shuster JL, 2000, Palliative care for advanced dementia. Clinical Geriatric Medicine. 16: 373-86.
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5.2.2 Another serious deficiency in the system of review is confusion about who has the right to access
care records. Many carers are being told that they do not have any rights to see the medical records of the
person who they are caring for. Even if access is allowed, many people are being forced to go through
cumbersome bureaucratic procedures to access information.
5.2.3 Carers must have access to medical records in order to make good use of the review process. Beyond
that, good practice in dementia care requires the involvement of those close to the person with dementia.
We are concerned that this is not happening. Our legal advice is that the law requires the public and private
interests in maintaining confidentiality to be weighed against the public and private interests in disclosure.
Clearer guidance to the NHS and local authorities is required.
5.3 Are people who may be eligible for NHS continuing care being identified?
5.3.1 The Alzheimer’s Society questions whether, following the initial stage of the review process, there
are ongoing attempts to identify people who may be eligible for NHS continuing care. In our experience
there is discrepancy around the country in how people are put forward for assessment for continuing care,
particularly when people are cared for at home or in a care home. In many areas it may be reliant on whether
the person has relatives able to advocate on their behalf, as not all staV will be aware that a person may be
eligible for continuing care.
5.4 Reviews are taking a long time
“In my wife’s case the process has taken a very long time. She has had two assessments, the last one
on August 04 and I have only just heard that we have been turned down for any more funding.”
(January 2005)
“The history of my review is as follows:
February 2003—appeal request to Chief Executive of PCT
October 2003—panel meeting
December 2003—notified of panels decision
December 2003—appealed to convenor
May 2004 —convenor asks panel to explain decision
September 2004—two meetings with PCT panel”
Carer
“Very slow process. No acknowledgement of letters etc received (one didn’t arrive) each stage seemed
to be drawn out.”
Carer
5.4.1 The Minister stated on 9 December that good progress has been made in clearing the backlog of
continuing care reviews. While the Alzheimer’s Society agrees that some progress has been made, numerous
people continue to wait far too long for reviews. It is unacceptable that vulnerable people are being forced
to go through such a time consuming and bureaucratic process.
5.5 Review panels are often not qualified to make clinical decisions
5.5.1 The experience of our members at continuing care review panels gives rise to concerns about various
aspects of the way that panels function. In particular we are concerned that review panels often do not have
the clinical expertise required to make decisions about who qualifies for fully funded continuing care. The
panels often do not include appropriate specialist clinicians.
5.5.2 Furthermore, the records available to panels seem limited. Some carers are attending panels and
finding that they have more extensive documentation than the panels themselves.
“After extensive enquiries to locate both X and Y care homes for M’s medical records, it appears both
no longer exist. It is also apparent, social services have no records available, and the only information
we have on file is the GP’s medical records.”
Letter from review panel
“When I was at the panel I explained why I thought my mother had complex care needs by referring
to the nursing care assessment made at the care home. The panel didn’t even have a copy of the
assessment.”
Carer
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5.6 Independent review panels are not independent
“I am left with the impression that far from being impractical the review process is revenue driven.”
Carer
“Another major flaw in the system is that the panel are all employees of the NHS. They all have a
vested interest in bringing in a verdict that suits the PCT. Our local Trust is £9 million in the red and
there is no way the panel is going to make things worse by causing it more expense. The career
prospects and promotion etc depend on them toeing the line.”
Carer
5.6.1 The Alzheimer’s Society has major concerns about the independence of the people making up
independent review panels. Anyone from the local NHS as a vested interest in ensuring that the trust does
not have to make a refund of continuing care costs, or to assess more people as meeting the criteria. We have
also been told of a number of instances where primary care trust financial directors sit on continuing care
panels. We do not find this acceptable. There should be no question of people with financial responsibility
at PCT level being involved in decision-making about clinical questions. The Department of Health has
made clear that PCTs will be given suYcient funds to make refunds for cases where continuing care has
wrongly been denied.
5.7 Carers are being told they cannot attend independent review panels
“I got a letter yesterday informing me that a panel had sat 2 months ago and found that my mother
didn’t meet the criteria. I would have liked to and have been there to give my views.”
Carer
“I asked if I could go to the panel and they said ‘no’.”
Carer
5.7.1 The Alzheimer’s Society believes that carers should be as involved as possible in care planning for
people with dementia, when the person is no longer able to make decisions by him or herself. Carers are
usually very knowledgeable about the medical condition of the person who they care for and should be an
integral part of care assessments and continuing care reviews. To deny carers access to continuing care
review panels is unacceptable. It leads to suspicion that unjust decisions are being made without adequate
information.
5.7.2 Guidance often also states that carers can bring someone with them for support but not to
contribute to discussion. Skilled advocates should be available to enable carers to make eVective
contributions to decision-making. In addition, advocates should be available for those people with dementia
who have no one to represent them. The Society is concerned that those people with dementia who have no
enduring power of attorney and no family and friends to represent them have been largely ignored in the
recent claims for compensation.
6. What Further Developments are Required to Support the Implementation of a National
Framework?
6.1 While we welcome the announcement of a national framework with clearer national guidance, we
believe that the national guidance needs to be accompanied by a programme of work to further encourage
equitable access. Without this, the government’s policy on who is entitled to continuing NHS health care
will remain discriminatory and inconsistent.
6.2 Training staV to identify and accurately assess individuals who may be eligible
6.2.1 An important part of the programme of work is provision of training for those performing
assessments for continuing care. As the Ombudsman noted in her report of 2004, assessment methods and
the quality of decision making has been variable. Given the complexity of many of the local criteria it is not
surprising that bad decisions have been made. Support and ongoing training and review should be available
to develop better assessment and decision making and ensure that people eligible for NHS continuing care
are in receipt of it.
6.2.2 One of the issues with which the care system is having particular trouble grappling, is how to identify
when people become eligible for continuing care. In some care homes there is a good system for identifying
continuing care cases as part of the assessment process for NHS funded nursing care. However, as care
assistants deliver the majority of the care for people with dementia it would be sensible for them to be trained
to be able to identify continuing care cases. Currently, the Alzheimer’s Society estimates that only 10% of
care staV in care homes are trained in dementia care. If we are to increase the quality of care available to
people with dementia who make up 75% of people in care homes, the training needs of care assistants and
nurses in mental health care need to be addressed as a matter of urgency.
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6.3 The criteria need to be clear, unambiguous and easy to understand
“Many lawyers are struggling to understand how the continuing care criteria work and apply in
individual cases. How the lay person can be expected to understand the criteria is beyond me.”
Carer
6.3.1 One of the strongest criticisms that the Alzheimer’s Society would make of the continuing care
criteria is that they are diYcult for lay people to understand. When people are deciding whether they should
apply for continuing care or ask for a review of their case, it is very diYcult for them to establish by looking
at the criteria whether they do have a case. For many people caring for someone with late stage dementia
it seems obvious that the person has a serious, deteriorating medical condition. However, they are then told
that their case does not meet the criteria. Any national review will have to develop criteria which are simple
for the NHS, local authorities and the public to understand.
6.4 There is confusion about the relationship between NHS nursing care and NHS continuing care
“My mother-in-law is classed as high band nursing care, and regularly receives care from nurses. But
she is not classed as continuing care.”
Carer
6.4.1 The government introduced NHS funded nursing care in nursing homes in response to the Royal
Commission on Long Term Care. In order to meet the criteria for higher band nursing care funding,
someone must receive regular care from a state registered nurse over a 24-hour period. In many cases where
people meet the criteria for nursing care, we find it very diYcult to understand why they do not meet the
criteria for fully funded continuing care. Carers, nurses and care home owners tell us that they are equally
confused. The relationship between NHS nursing care payments and fully funded continuing care will need
to form part of the government’s review of continuing care.
6.5 Inadequate arrangements in place for the NHS to deliver continuing care, combined with a poor
relationship with social care services
“The nursing staV and assessment people were very kind and helpful. The whole process took about
a year. The problem was when we got NHS funding, social services withdrew and left us without any
care. The NHS say they are unable to find carers to take care of my husband, so now I have less care
and have to manage with friends and neighbours or allow him to go into hospital or nursing home.”
Carer
6.5.1 The Alzheimer’s Society is in contact with a number of people who have experienced serious
diYculties in agreeing an adequate continuing care package for a person with dementia once it has been
agreed that they meet the criteria. In particular, there seems to be a serious breakdown in care arrangements
when the responsibility for providing care moves from social services to the NHS or vice versa. Better
arrangements need to be in place to ensure continuity of care. If care workers are already in place supporting
someone, it can be very confusing for someone with dementia to have a complete change in care
arrangements. Social services and the NHS should be able to work together better to ensure continuity of
care.
6.5.2 The quality of care provided to people with dementia in care homes is often inadequate. People with
dementia on continuing care wards will receive regular supervision from a multidisciplinary team. They will
be under constant consultant review, and a ratio of one nurse to every six people is not uncommon. This
level of support rarely exists for people with dementia who meet the continuing care criteria that are cared
for in care homes. The Alzheimer’s Society does not argue that continuing care wards are the correct or
single model which should be used for continuing care, but many do present an eVective model of care.
7. Recommendations
7.1 In addition to the areas of work we have suggested as necessary to support the implementation of the
national guidance we have developed a number of recommendations. In particular, the Department of
Health has indicated that some of the work streams that form the review which they will be conducting into
continuing care are likely to take up to 12 months. We would recommend some short-term changes which
we feel would help to resolve some of the problems which we have identified in this memorandum, as well
as some areas which need to be resolved as part of the review.
7.2 The Department of Health must develop clear, lay friendly, national NHS continuing care criteria,
assessment tools, and guidance which pay specific attention to mental health care. Particular attention will
need to be paid to the relationship between NHS continuing care and NHS funded nursing care.
7.3 PCTs and SHAs should perform a needs based audit of continuing care provision to understand
whether current provision is adequate.
7.4 Health and social care professionals involved in assessments for NHS continuing care must be trained
in how to identify mental health needs and deliver care packages which meet those needs.
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7.5 The Department of Health must urgently review the definition of “nursing” contained in the Health
and Social Care Act 2001 to ensure that it does not discriminate against people with dementia.
7.6 Better systems of working must be developed between the NHS and social care to ensure continuity
of care when someone is assessed as “continuing care” and when responsibility for funding care moves from
one body to another.
7.7 In relation to continuing care reviews clear guidance must be given to PCTs and SHAs on:
— enabling carers to access medical records, as appropriate;
— involving carers in developing care plans, as appropriate;
— allowing carers to attend independent review panels;
— allowing carers access to an advocate who can support continuing care reviews;
— ensuring that meetings of review panels are easily accessible to carers;
— how to ensure that review panels have the clinical expertise required to make sensible decisions;
and
— the make up of review panels to ensure that they are “independent”. In particular PCT or SHA
oYcials with budgetary responsibility must not be part of the review process.
7.8 The Health Select Committee must consider having a more detailed enquiry to investigate the division
between health and social care, particularly with regard to the care of older people. This should focus on
elements such as the government’s response to the Royal Commission on Long Term Care and how NHS
funded nursing care is working in practice.
Memorandum by Citizens Advice (CC 15)
Introduction
The CAB Service welcomes the opportunity to submit evidence to the Health Committee’s review of
continuing care. It is clear from our evidence that this issue continues to be highly problematic and a source
of much confusion amongst patients, their carers and health professionals.
Following the publicity resulting from the Health Service Ombudsman’s report in February 2003, many
bureaux reported clients seeking clarification and further information about how the report might aVect
their relative’s situation and what steps they should take. In addition, those bureaux which are involved in
delivering the Independent Complaints Advocacy Service (ICAS) have undertaken extensive work in
helping clients through the revision and restitution process which followed the Ombudsman’s report and
the Department of Health’s response.
Since September 2003, Citizens Advice Bureaux (CABx) in six regions across England have been involved
in providing help, advice and advocacy to people who have had a problematic experience with the NHS,
through the provision of the Independent Complaints Advocacy Service (ICAS). These ICAS bureaux have
dealt with a total of 96 continuing care cases over this period, 33 of which have been opened since December
2004. There is therefore no sign yet that the advice and support needs of patients are declining. Many of the
early cases involved clients who had been pursuing their case for some time and had already completed a
number of the stages in the review process. The more recent cases more often involve people who are new
to the continuing care system.
Through our involvement in ICAS as well as evidence from the wider CAB network, it is apparent that
the issue of NHS continuing health care funding continues to be problematic. Following the Health
Ombudsman’s recommendation, many carers have approached ICAS bureaux requesting support during
the review process of a patient’s continuing health care decision. Evidence from bureaux suggests that whilst
the eligibility criteria for continuing health care funding remain unclear, there is also wide variation in the
outcomes of the reviews.
There is also wide variation in how NHS trusts are carrying out the review process of decisions made since
1996, ranging from proactively contacting patients and their carers who may be aVected, to primary care
trusts being unaware that they should be carrying out reviews at all. It is imperative that NHS trusts have
a consistent approach towards continuing health care assessments, for both current and reviewed
assessments to be fair and transparent.
Further, it is diYcult to see how a truly patient centred or personalised service can be implemented whilst
the above confusion reigns. If NHS and social service departments are unclear about what the rules are and
how they should be applied, given their access to NHS knowledge and information services, patients and
their carers are often left in the dark about what the issues are regarding access to, and funding of care, and
so cannot be empowered to make informed choices. Information for patients and carers in this area is at
best minimal, and at worst, misleading or non existent.
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Inadequate Information
“We find it hard to understand what is health and what is social care within our own organisations, and yet
we expect the public to understand it!” (quoted in Continuing Health Care: review, revision and restitution,
Melanie Henwood, Dept of Health, 2004)
It is very clear from CAB evidence that the information provided to patients and carers on the continuing
care procedures is woefully inadequate. Given the complexity of the policy and the uncertainly of health
care processionals in how to apply it, this is not surprising. However this is nonetheless totally unacceptable
in such an important area of health care provision, where the outcome of the decision can make a huge
financial diVerence to families involved.
Many CABx clients are not only not informed of what options are available and of the funding
arrangements for each, but they are more often than not, provided with no choices at all, and merely advised
of what the NHS and/or social services departments have decided—often involving removal of the patient
from his/her home, and being presented with the substantial costs to patients that this decision creates.
A bureau in the South West report on the case of a 95-year-old woman who had terminal bowel
cancer was partially sighted, nearly deaf, doubly incontinent and confused. She also could not
move without assistance, and so was also dependent on others to feed and dress her. She was
hospitalised following a fall and spent three months in hospital. At the end of this time, the family
was informed by hospital staV and a social worker that the hospital could do no more for their
mother, and that she should be discharged to a nursing home. The family was advised that their
mother should be self-funding. The family was provided with no advice about how this decision
had been made and what the options were for their mother. They felt that they had simply been
given an ultimatum. The family placed their mother in a nursing home, but found the whole
experience very traumatic as they were provided with no help or information in finding the home,
and did not receive any advice from NHS or social services.
A bureau in the North West is assisting a family whose father had become completely dependent
following a number of severe strokes. He is completely immobile, unable to perform any tasks
unaided, unable to communicate and totally reliant on 24 hour nursing care. The family were
advised that their father would have to be placed in a nursing home, and were told that his home
would need to be sold to fund his care. The family received no information about the assessment
process, or even whether their father had received a continuing health care assessment.
When investigating further, it was revealed that their father had never been provided with a
continuing health care assessment. A joint assessment between the NHS and social services had
been carried out, resulting in their father being assessed as being eligible for medium rate nursing
care. The family was totally unaware of this, and had never been informed. The family has
requested a continuing health care assessment and is awaiting a new decision.
Given the vulnerability of patients and their carers at a time like this, it is essential that clear information
and advice are available outlining the needs of the patient and the options available for the patient and their
carers in getting those needs met. In order for this to happen, it is imperative that NHS and social service
personnel, firstly, are clear about what the care needs of the patient are; secondly, are informed about what
the options are to meet the care needs, and thirdly, and equally as importantly, recognize the importance
of, and are trained in conveying this information to patients and their families/carers.
Information is also essential if people are to be able to properly engage with the review process. Again
the evidence is that this has not been the case. Many panels do not appear to have a procedure to inform
patients that their case is being reassessed, let alone to ensure that they have the opportunity to attend the
hearing, and present their case, supported by an advocate where necessary:
A client in the North West found out that his father’s case was due to be reassessed at a sifting
panel and asked if he could attend. He was told that he could not; he contacted ICAS who
questioned why the client could not attend. The PCT agreed that the client could attend with the
ICAS caseworker but as the panel had 32 cases to reassess that day they could not have long to
put their case across. CAB would question whether it is possible to conduct a proper assessment
of so many cases in one day.
In the midst of all this confusion, there are strategic health authorities doing their best to make sure that
the services they provide are patient centred, and aim to be open and transparent in their decision making:
A CAB in the London region has been working with a strategic health authority on a continuing
health care review case. The strategic health authority has developed detailed guidance in
conjunction with primary care trusts and social service departments in their area on NHS and local
authority responsibilities for meeting continuing health care needs. The document provides
information on both current assessments and issues that may arise from the retrospective reviews.
It provides pen pictures for NHS continuing health care and joint NHS and social care
assessments. The document has been produced for NHS and social service personnel working in
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continuing health care. However, it is also available to the public on request. The strategic health
authority has provided this document to ICAS in an attempt to ensure that people wishing to
challenge assessment decisions have clear information on which to base their challenge.
Unfortunately, CABx have found that this type of approach by strategic health authorities is the
exception rather than the rule.
Poor Decision Making
Many CABx report fundamental problems with the adequacy or indeed existence of the initial decision
making regarding eligibility for continuing care. The Government issued new directions in February 2004
outlining criteria for consideration of eligibility for continuing care upon discharge from hospital. This
procedure should be followed prior to the RNCC assessment which assesses the level of nursing care which
will be funded directly to a nursing home. However many ICAS clients have still not received a written copy
of the assessment made. Others have been told that they do not qualify for continuing care as they have not
met the criteria for the highest level of nursing care. These are two separate assessments and the criteria for
continuing care are not dependent on meeting the criteria for the highest band of nursing care.
CABx in the North West reported that a primary care trust was not carrying out a specific
assessment, but was relying on the joint NHS and social service assessment. They stated that if a
patient was assessed as requiring the highest-level band of nursing care, then NHS continuing
health care funding would be considered. CABx report that many of their clients suVer from
degenerative diseases, which require intensive nursing care, but are not being considered for
continuing health care assessment, as they have previously had a joint assessment that has located
them in the middle-level band of nursing care.
A further issue relates to where the patient is living. The guidance for NHS continuing health care
assessments makes it clear that assessments should focus on the health needs of patients, irrespective of
where the care is carried out. However CAB evidence indicates that this guidance is not being applied, and
that where patients are resident has been used as a criterion as to their eligibility for NHS continuing health
care funding.
A CAB in the South West reported that a primary care trust had adopted a blanket policy whereby
if nurses employed by a nursing home are caring for a patient, the patient is not eligible for
continuing health care funding. This is irrespective of the patient’s healthcare needs, and the
nursing home employing specialist nurses to provide complex health care. Further, the CAB
reported that there is inconsistency in the application of the criteria as one nursing home might
call in specialist help, whereas another might already employ specialist nurses to manage the same
conditions; therefore people with the same health needs are treated diVerently under the criteria.
A CAB in London reported a client whose aunt had suVered from Alzheimer’s. The PCT took no
action fro three months, after which they referred the case to the Strategic Health Authority
(SHA). The latter decided, on the basis of medical records which were two years out of date, that
she did not meet the criteria for continuing care because she went into a nursing home from home
rather than from hospital. The case was referred to the Ombudsman.
The diagnosis of the health condition appears to have a bearing on whether a patient is considered for
NHS continuing health care funding. Although a patient’s physical and mental healthcare needs should be
considered at the point of assessment, CABx report that all too often psychiatric and psychological needs
are ignored. In some cases a shortage of community psychiatric nurses may mean that none are involved in
the continuing care assessment. This is particularly pertinent for patients suVering from dementia and other
mentally debilitating conditions.
A CAB in the North West is supporting a client whose mother suVers from dementia. She was
admitted to hospital following a fall and a continuing health care assessment was carried out.
However, the assessment only focused on her physical condition and healthcare needs, and ignored
her psychiatric healthcare needs.
Adequacy of the Review Procedure
Many of these problems have been compounded for patients because of the complexity and inadequacies
of the review process.
Firstly, as mentioned above, the review process is often far from patient -centred or transparent, and
therefore patients may have diYculty in accepting that an adverse decision is reasonable.
A CAB adviser in the south west who accompanied a client to a review, commented that it felt as
if the balance was firmly tipped against the client. There was no guidance to help people interpret
the criteria so that they knew what were the key points of their case which they should emphasise.
In addition the local review oYcer had prepared a written report which was copied to the eight
panel members but not to the patient until the adviser requested it.
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Secondly, the quality of evidence available can be very inadequate, particularly where a case goes back
several years. There are no requirements on nursing home providers to keep records which would enable a
retrospective assessment of eligibility for continuing care to be carried out.
A CAB in the North West reported a client who has been trying to obtain continuing care
restitution for her aunt for the past three years. She came to ICAS when she came to an impasse
with the PCT who had said that, as the nursing home records had disappeared they did not have
suYcient records to review the case. The ICAS case worker is trying to establish what records are
available such as hospital and GP records but the PCT seems “disinterested”. It seems likely that
this case will go to the Ombudsman.
Thirdly, the full review process can be very protracted, which prolongs the anxiety and distress for patients
and their relatives. The process can involve panels at both PCT and SHA. In some cases the SHA may refer
the case back to be heard by another PCT panel if they feel the first one was inadequate.
Fourthly, at its worst, it appears that people can find their cases batted between the PCT and the SHA
where the two bodies disagree:
A CAB in Lancashire reported a client who was told by the PCT that as they did not have the
arrangements established for the first review, she should go directly to the SHA. The ICAS
caseworker applied to the SHA accordingly and was trying to arrange the details of the review.
After a few weeks the SHA decided that they could not review the decision until the PCT had held
a review. The PCT cannot give a date when they will have their procedures ready.
Another client in diVerent areas of Lancashire went through all the reviews at the PCT and SHA
level where the panel found in his favour. The PCT objected and under the regulations was able
to request another SHA panel review. The SHA were very shocked that the PCT would not
honour their decision but admitted to the ICAS caseworker that they could not enforce the
decision. The case has been referred to the Health Service Ombudsman, who may find in the
client’s favour but also cannot force the PCT to make the payment.
Second Stage Complaints
Where a person makes a complaint there are generally two stages to the complaints procedure before the
client has recourse to the Health Ombudsman. If local resolution including access to ICAS fails to satisfy
the complainant the matter may be referred to the Healthcare Commission. However, the Commission has
taken the decision to fast-track complaints it receives on continuing care direct to the Ombudsman. This
means that people will miss out on the second stage of the independent complaints process. We would
question whether this position is right in terms of natural justice.
Conclusions and Recommendations
CAB evidence indicates that decision making around eligibility for continuing care continues to be one
of the least satisfactory areas of NHS practice. In our view this stems in part from the complexity of the
policy itself, which has proved diYcult to understand and to administer. This has resulted in poor decisionmaking by health professionals and lack of information for patients, leaving many confused and frustrated.
Yet these decisions, which can be very marginal, have huge financial implications for patients and their
families, often running into hundreds of thousands of pounds.
This is highly unsatisfactory and runs totally contrary to the principles of the patient-centred health
service which the Government is striving to create. Indeed it is diYcult to find any supporters for the current
policy. Certainly it is clear from Henwood’s research (op cit) that many health professionals are
uncomfortable with current provisions and resent the amount of time spent on assessments rather than on
the direct delivery of health care.
In our view there is an urgent need for a fundamental review of the legal framework surrounding the
definition of and entitlement to continuing care, in the context of a comprehensive, inclusive and public
consultation. The courts have usefully explored the principles of existing legislation and providers’
obligations, but greater transparency and clear codification is required to achieve a fair threshold between
NHS and social service functions in a way that treats the whole person’s needs. If the current distinction
between the charging for personal and health care (which is arguably a false distinction and the root of the
problem) is to remain, then at a minimum, the aim must be to achieve consensus over the meaning of
continuing care which is transparent, fair and equitable, and easy to administer.
With regard to the terms of reference of this inquiry, CAB evidence indicates that the review process has
had mixed success in addressing the needs of patients wrongly denied continuing care funding. Whilst many
have benefited financially, the process has proved distressing and alienating for many patients. In addition,
the quality of decision making has often been poor, and the lack of information and transparency in the
process has meant that patients have found negative decisions diYcult to accept.
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We consider it essential that the “development of a national consistent approach to assessment”
announced by the Minister on 9 December 2005 includes the development of a single set of national
eligibility criteria, to be applied by all trusts. These must be transparent and understandable to health
professionals, patients and carers.
In addition these must be underpinned by measures to improve the procedures by which they are applied,
which should include:
— A nationally produced information strategy for patients and carers including leaflets and guidance
on how continuing care decisions are made, and how these can be reviewed.
— Comprehensive training for all professionals who may be involved in the continuing care
assessment process, including GPs, social services and care home staV.
— Clear requirements on record keeping for all health professionals including GPs, care home staV
and social services staV. This should include a requirement for periodic reviews of patients’
eligibility for continuing care, in order to ensure that patients whose conditions vary over time are
properly assessed.
— Measures to improve the timeliness of decision making where the review process is invoked.
— Where a trust’s decision has been referred to an SHA, the SHA’s decision should be binding on
the trust.
Witnesses: Ms Pauline Thompson, Policy OYcer, Community Care Finance, Age Concern, Ms Julia Cream,
Head of Public AVairs, and Ms Barbara Pointon, Alzheimer’s Society, Mr John Wheatley, Senior Social
Policy OYcer (Social Exclusion, Work and Welfare) and Ms Anne Williams, Independent Complaints
Advocacy Service, Regional Co-ordinator for the North West, Citizens’ Advice, examined.
Q90 Chairman: Welcome to our witnesses. We are
very grateful for your participation. I am sorry we
are slightly delayed on bringing you on, but I am
sure you will agree, because you have all been
present, that it was a very useful session. Can you
briefly introduce yourselves to the Committee?
Ms Pointon: I am Barbara Pointon. I am a carer of
someone who is in the very last stages of dementia.
We have been on the sharp end of the continuing
care system.
Ms Cream: I am Julia Cream, Head of Public AVairs
for the Alzheimer’s Society.
Ms Williams: I am Anne Williams, the North West
Regional ICAS Co-ordinator for Citizens’ Advice
Bureau. We help people through the NHS
complaints procedure.
Mr Wheatley: I am John Wheatley from Citizens’
Advice.
Ms Thompson: I am Pauline Thompson, Policy
Advisor for Age Concern on care finance.
Q91 Chairman: Can I begin by asking you a broad
opening question. You have heard the arguments
and concerns that have been put to us, and I am sure
you are aware of some of the evidence we have
received, and most of you have submitted evidence
to us. What would be the easiest means of resolving
the current diYculties within continuing care?
Ms Cream: My top three suggestions for improving
would be national criteria, national assessment tools
and much better training for people doing
assessments. We have additional concerns around
the emphasis on physical health needs as opposed to
mental health needs, and an issue that is coming up
more recently is the diYculty of continuity of the
care package when people move from social care to
NHS continuing care.
Q92 Chairman: What can be done about that?
Ms Cream: Better joint working.
Ms Pointon: Extend direct payments to NHS
continuing care.
Q93 Chairman: Say a bit more about that, Ms
Pointed; and if you want to talk about your
experiences in relation to your own circumstances—
which is why you are here—how might that possibly
help you?
Ms Pointon: Direct payments I think are the best
thing since sliced bread. They give a choice as to who
works in our own home. I am going to talk mainly
about caring for someone at home, because what is
worrying me is the institutional mindset that is often
brought to a lot of the criteria and the assessment
processes. To pick up Julia’s last point, Malcolm was
on direct payments funded by social services. He
moved to continuing care, and then there is the
notion of the NHS being unable to directly fund
those; and so we are under threat of having our care
package upset. This is about the last thing that either
the carer or the patient wants. I would like to know
why the NHS cannot take over the care package as
is, and simply fund it as is.
Q94 Chairman: You make a very bold point about
the way in which we view things through
institutional care, which is something that one or
two of us have argued for a long time. Do you feel
you are speaking on behalf of other people who are
caring for someone in the community, in reflecting
that thought?
Ms Pointon: I do, because I speak at a lot of
conferences and seminars and people come up to me
at the end and say, “your experience is my
experience”, so I think I am not a lone voice.
Malcolm was assessed three times for continuing
care, and one of the criteria that was being used was
that it was not nursing care because I was not a
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nurse, so the care was being defined by who gives it,
which is fine in an institutional setting but does not
work if you are working at home because you do not
have a nurse on tap. Secondly, somehow the notion
that you are caring in a home does need a diVerent
approach, for example live-in care is essential in the
late stages of some illnesses, and that is an area in
which the NHS has very little experience of
commissioning.
Ms Thompson: There is a real problem about people
who get care at home and who are in residential care.
There seems to be a mindset that you can only get
fully-funded NHS care in a nursing home, whereas
it is quite clear in the guidance that you can get it
anywhere. It is whether or not that personal care is
paid for at home, because obviously it is a combined
package of care, but if somebody’s primary needs
are health needs, then the whole lot is the
responsibility of the NHS. Only last week, I had
somebody who rang me up who was told that if they
went into a nursing home, they would have the care
package fully funded by the NHS, but if he went
home the personal care would have to be funded by
social services; therefore he would have to pay. I am
thinking that this does not match up at all. The other
real issue that needs to be addressed if we are going
to get anything like a sensible view of continuing
NHS care is that we have to sort out the registered
nursing care contribution. The very fact that the
highest band is described in the way it is, which by
anybody’s standards their primary need must be
healthcare, yet you only get £125; and even the £75
band has some diYculties, so unless that gets sorted
we are always going to have this problem that you
have to be worse in order to get continuing care.
Mr Wheatley: We would certainly support the call
for a single set of national eligibility criteria within
the consistent national approach and better training
for professionals involved in the continuing care
process. It is clear to us also that people do not get
enough clear information about what the process is,
what their rights are for reviews, and how the review
processes are carried out; but there does also need to
be an information strategy for people. There should
be better record-keeping, clear requirements for
record-keeping so that we do not see the experience
of trying to review cases where there are simply no
contemporaneous records. A lot of the cases we see
are about reviews, so measures to improve timeliness
of reviews would also help, and the problem of
making decisions binding where people can be
dealing with a strategic health authority, a PCT and
in some cases the Ombudsman—but in none of these
cases is the ultimate decision binding on the person
responsible for paying.
Ms Williams: I would like to add to the wish-list that
we would like to have some independence. The line
of questioning in the earlier session was indicating
that the fact that money is involved and that the PCT
staV are under some pressure and that there is a
limited budget as to where this money will come
from. The people who are doing the assessment are
quite people who are doing the review of their own
assessment, and there needs to be a level of
independence somewhere. As John said, we have
had one case that has gone through numerous
reviews at PCT level, gone to the strategic health
authority level; and the strategic health authority
found in favour of our client, and the PCT will not
honour it; and there is nothing anybody can do.
Q95 Chairman: You cannot go to the Ombudsman.
Ms Williams: We can, but if they decide to go against
the Ombudsman it is not binding. They can make
recommendations. Even to get to the Ombudsman
stage to look at it and get a result, currently it is
taking 55 weeks. It will be over another year before
that family will know what is happening, so there
needs to be a more timely review. We did hear the
problems about no records, and that is undoubtedly
a problem, but when we have suggested that there
must be other medical records around—the health
service keep records for seven or eight years, and
there must be GP records and incidents when they
have had interaction in the hospitals. They will not
use them in some instances; they will only use the
nursing home records. In many cases in some areas
that nursing home no longer exists, and then it just
sits on a desk and it is very diYcult to get it moved
forward.
Q96 Chairman: Looking at information back some
time, where you cannot get information from the
records of the home—either they are not there or
they are inadequate—you have diYculty accessing
alternative means of working out this person’s
circumstances.
Ms Williams: It is some of the review panels—
whether they will accept that evidence; and quite
often the carer’s evidence is not considered; it is only
the written contemporaneous records of the nursing
care that was given at that time.
Q97 Chairman: They might not accept the GP’s
records that could aYrm the nature of the care that
was needed—
Ms Williams: That is the argument we use to say they
should be considering it, but we have to push that.
My concern is that we deal with a very few number
of the cases. As was pointed out earlier on, a lot of
the people who perhaps are not as articulate do not
know—and do not all belong to working men’s
social clubs—that there are schemes available and
that they would be entitled to them.
Ms Pointon: I would like to suggest that in the
criteria a professional is designated whose
responsibility it is to tell all families about the
existence of continuing care. It is self-funders who
get the very thin end of the wedge because they do
not have the social worker to their elbow. If you
could say it is the GP’s responsibility—it is
something everybody has got, and the only answer
there is a GP; it is their responsibility to tell the
family about the existence of continuing care. I went
for five years without knowing it existed. If you do
not know it exists, then you cannot apply for it.
Ms Cream: I think if carers felt they were going to
be automatically oVered NHS continuing care when
the person they were caring for was eligible, it would
dramatically change the system. At the moment my
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overwhelming impression is that they fight tooth and
nail to get it, and it is a battle, which creates a very
adversarial culture.
Q98 Dr Taylor: We heard in the first session that
PCT and SHA representatives are working for fair
and consistent application of the criteria. Talking
first to Age Concern, how do you think the
assessment process and the application of it is
working?
Ms Thompson: You must remember that we only
ever get the complaints. I know that there are some
people where it has all happened magically, and they
do not ring us up to tell us that. Certainly from the
calls that we have had, I would say with a huge
amount of diYculty. If you ask for continuing care,
we find that people are put oV right from the very
beginning—“oh, nobody gets it in this area; you
have to be nearly dead to get it”. So right from the
start you are working from a system whereby you
might find that in that case you will not bother. It is
an attitude. I suspect the staV that are working at the
higher level are all working very hard to get it even
across the board, but then you have lots and lots of
front-end staV who may or may not be too aware of
changing criteria attitude, so it is a mindset at the
moment within the NHS that they are there to deal
with acute services, and continuing care is something
else really. There is a problem there. We certainly
find there are people that come to us who have had
an assessment tool and have to meet a number of the
criteria at a certain level, and in some cases it seems
to be very, very rigidly applied. I think it would be
pretty hard for Pamela Coughlan to get continuing
NHS care based on some of the criteria we have seen.
Q99 Dr Taylor: You have been very fair and said you
really only get complaints, but you must have some
idea from members and supporters that the system
as a whole is working or is full-stop not working.
Ms Thompson: I would say it is full-stop not
working.
Q100 Dr Taylor: Obviously ICAS get the
complaints.
Ms Williams: We get them across the range, and
traditionally Citizens’ Advice Bureau have always
worked with our colleagues in the rest of the
voluntary sector. Prior to us dealing with this, we
would always forward people on, so it has been a bit
of a steep learning curve. We deal with all the
complaints across the NHS. Continuing care is the
biggest postcode lottery of them all. You will be
aware on this Committee of the problems with
cancer care and all the rest of it, but it is nothing to
continuing care—it is so diVerent. Every PCT, even
though they have got the same strategic health
authority criteria, have interpreted it very
diVerently. Every professional on the ground then
interpreted that slightly diVerently, and it is the one
area where the public have the least comprehension
on how it is working. It is very diYcult, especially if
a couple may have a parent each who is in need of
continuing care, who live literally up the road from
each other but come within two diVerent PCT areas,
and they cannot understand at all why one will be
eligible and the other one who in their minds is more
ill and therefore needs more care cannot get it. You
cannot explain it. We have been advised by the
Ombudsman’s oYce that all the criteria have been
checked legally, and all comply with the regulations;
and the only way we can challenge the criteria—and
we do feel there are some we would like to
challenge—is through judicial review. That is very,
very diYcult and very expensive. If you have spent
several years trailing around diVerent review panels
and taking days oV holiday and hours and hours—
and Barbara has taken years to try and achieve it—
judicial review is not an option. I do think we need
to have a national criteria.
Q101 Chairman: Ms Williams, you made the point
about postcode lottery. Is that a point that resonates
with everybody else.
Ms Thompson: Absolutely.
Q102 Dr Taylor: You have already said you would
agree with Ms Cream’s first point on national
criteria. Would you also agree national tools and far
better training?
Ms Williams: Yes, all of those. We would also want
some level of independence in the reviews. I really do
not think it is right that the people who have made
the decision should review that decision.
Q103 Dr Taylor: Can I turn to the interface between
RNCC and continuing care. You have already said
that there is not an interface; they are one and the
same thing eVectively.
Ms Thompson: EVectively. If you look at the criteria
for the highest bands you have to have complex
predictable needs; you have to need therapeutic
interventions over a 24-hour period. How can they
describe that as not having a primary health need
and only being incidental and ancillary to the
accommodation? I think all the time you have to go
back to the Coughlan case. Although we were
talking earlier about its policy, and policy has
shifted, at the end of the day it is the law. There is an
Act and there has been case law which establishes
this. Unless it reflects that case law, I am severely
worried, and I feel that if we go for national criteria
we have to be absolutely straight down the line that
we are properly reflecting the Coughlan case in the
criteria and in the assessment tools.
Q104 Dr Taylor: What form should our
recommendation take; that we abolish the diVerence
between them—that they are really the same?
Ms Thompson: I certainly think that you cannot
look at one without the other, so both of them will
need to be looked at together. If they are going to
keep the system whereby some people have fullyfunded care—and a lot of people do not quite
realise—they muddle it up with the free personal
care. It is so diVerent because fully-funded care in a
care home means that if the home costs £700, the
NHS pays that £700. If we are looking at having a
system whereby some people, because of their
primary health needs, should be fully funded, which
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we agree with because that has always been the case
since 1948, you then need to sort out that those
people that do not qualify for that full funding but
have much lower nursing needs—that there is a
separate band for them, but it is very clear that there
is some sort of disparity between one and the other,
and that they are not so muddled up—that you have
to be so bad to get the nursing band and you have to
be even worse to get continuing care.
Q105 Dr Taylor: So a better definition of the
banding would be one answer.
Ms Thompson: Yes, one answer.
Ms Williams: We see a lot of cases where, regardless
of how many toolkits people are given or criteria, the
practice still regularly occurs where people do the
RNCC banding; and then, because you are not
getting the highest level you do not get the
continuing care. When we get involved and asked
the date of the continuing care assessment, they were
all done at the same time by the same people, and
because you have not got the highest level of nursing
care, which has been explained is very diYcult—we
had a client who was unfortunately in the very last
stages of the Parkinson mask, which means that
their condition is very, very stable and they are very,
very rigid, so they are not qualified for the highest
level of nursing care. The fact that that person has
huge nursing care needs means that they do not
qualify for the highest level of nursing care because
they are not unstable, and therefore that particular
client was refused continuing care. When we got
involved and started to ask when they started to do
the continuing care assessment—luckily it has now
been awarded, but why should that family go
through all of that because there is this confusion
over the nursing care. We do need to stress
independence on review.
Q106 Dr Naysmith: The recommendation should be
that the continuing care assessment should be done
first.
Ms Williams: Yes.
Q107 Dr Naysmith: Why does that not always
happen, or does it ever happen that people say, “if
we do the continuing care assessment first it will cost
us more money than if we do the nursing first”? Does
that ever happen, although it was denied in the
previous session that it would ever happen? In your
experience—
Ms Williams: It happens daily. As one of them said
in the previous session, quite often these will often be
done within an acute session, so there will usually be
a social worker, possibly an OT or a nurse from that
ward, and they will do the assessment and they will
do both sets of assessments. In a large hospital
setting there will be many, many beds taken, with
bed-blocking and all the rest of it, so there is a lot of
pressure on the ground for the front-line staV to get
this done. Sometimes those two people will make the
decision. The doctor’s input and other professionals
will come in at an after date, but that person has been
moved out of that hospital and into a situation
where there is no nursing care, and to get them out
of the hospital pretty quickly.
Q108 Dr Naysmith: Let us be absolutely clear. There
would not necessarily be a benefit for the hospital in
going for one or another—the money comes from
the primary care trust. Presumably, it does not go to
the hospital to distribute it, it goes to continuing
care; so what would the benefit be for the hospital—
Ms Williams: I am sorry, I did miss out that quite
often there would be a PCT member there, and that
that is why it is. Quite often it is the commissioning
care manager who will be doing all the reviews.
Ms Thompson: We find very frequently that in spite
of the fact that there were directions issued last year
that the continuing care assessment has to be done
first, there is no continuing care assessment done at
all. A friend of mine only last week was telling me,
“my Mum has got to go into a nursing home next
week”—she was in hospital. I said: “Have they done
a continuing care assessment?” She looked at me
blankly. “Do you know how much nursing bands
she is going to get?” Again, she looked at me blankly.
So I put down a few questions to her—“you must
ask this, this and this before you agree that your
Mum can go into a nursing home” and she now has
continuing care, but it was only because she showed
them the e-mail I had sent her and said, “Should I be
asking for continuing care?” The social worker said:
“Oh, yes, I think perhaps you might.” It would not
have been raised otherwise.
Ms Pointon: I would say anecdotally that although I
asked Malcolm to be assessed against the continuing
care criteria twice he was assessed against the
RNCC, and so even when you ask for it—I think
there is confusion among some of the professionals
actually, who do the assessments. Could I say two or
three things about the assessment process itself?
What has got to me is the notion that one size fits all.
Malcolm’s assessments took very little account of
important features of dementia such as panic
attacks, hallucinations, inability to communicate or
understand, and the psychological eVects of the
illness. Unless you ask the right questions, you will
not get the right answers in the assessments. I think
it is down to the fact that we are using a tick-box
mentality to do these assessments. It is my personal
view that human-beings are far too complex to be
reduced to a system of ticks in boxes and Gestalt
psychology told us a long time ago that the whole is
greater than the sum of the parts. A more holistic
view should be taken of assessments, which are
based on what levels of care the person needs rather
than who should give it. As a carer, as a receiver of
this process, I am strongly of the opinion that the
assessments are designed more to discover who
should be funding the care rather than the level of
care that should be provided to this patient. You
talked right at the beginning about the division
between social, personal and nursing care; and if
only that were abolished, then a lot of this palaver
and professional time would be done away with. I
have a vision of the future that care is care is care
whether you are talking about someone who is
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unable to dress themselves or about palliative care.
If the funding for it were in one bucket that was
totally separate from funding from social services
and health in other means, first of all it would do
away with a lot of these almost positionings that
people take around the problem. Secondly, there
would be a continuum of care, and when people
move from one kind of care to another there would
not be this dislocation. Thirdly, the taxpayer—and
this is where I make an openly political point—
would look more kindly on a hypothecated tax
particularly for the sick and the elderly that was
going into one holistic budget rather than being
pooled budgets. That is just how I feel from where I
sit as a lay person.
Q109 Chairman: I would not disagree with anything
you said.
Ms Cream: On the RNCC issue, I think the
introduction of the RNCC has focused so much of
the debate on what is nursing care as opposed to
what is health care, and it has particularly penalised
people with dementia because they get very little care
from nurses. It has also meant that people in
residential care homes—and you might be in a
residential care home not because that might be the
best setting but it might be the only place that can
take you as opposed to a nursing home, but then you
do not get any contribution if you are self-funding
from the health service.
Q110 Dr Taylor: Ms Pointon made a very good
point, that the carer is defined by who gives the care.
If it is a nurse that gives it, it is nursing care; and if
the same care is given by anybody else it is not. That
is a very good point.
Ms Thompson: I think the Ombudsman’s case in
relation to Ms Pointon’s case, where she said it does
not matter who gives the care—if it is healthcare it is
healthcare—is such an important point.
Q111 Mr Burns: Ms Thompson, we have heard
concerns that if a self-funding resident in a care
home becomes eligible for continuing care, the home
may face a drop in the fees that are paid, and the
resident may then have to move to a less expensive
home with all the disruption and whatever; or be
faced with a requirement to top up the NHS
contribution to their care costs. Do you have any
evidence of such situations, and what advice would
you give us as to how we can address the problem?
Ms Thompson: We have had people who were told—
because there is no choice of accommodation in the
NHS in the same way as there is in the social services
clients—when they were first thinking about asking
whether or not they should get full funding, that they
will not be able to stay in the same home. That, I
find, really worrying because it meant that some
people were still paying for their care who could
probably well be being fully funded who have to
decide that because of this risk of them having to
move they will not apply for it. I have had cases
where the person has been found to be needing full
funding, and the particular home was more
expensive than the NHS was prepared to pay. In
some cases, it has been juggled around, whereby the
care home has said “these are the fees for your care
and these are extras”; but I worry about that because
that means that care homes could just carry on
adding on to the extras and adding on to the extras
and adding on to the extras. We have a real problem
with local authority residents and topping-up at the
moment and I do not want to see that replicated in
the NHS. It is the whole business of funding care
homes at the moment, and we have concerns that
self-funders are subsidising local authority-funded
residents. I can understand that the NHS does not
probably want to pay the self-funding rate if they
think that is because they are having to subsidise the
local authority. It is a real issue that needs to be
addressed across the board. What actually is the
NHS paying for? I have even heard some time ago
that in one area the NHS was not prepared to pay
more than social services were prepared to pay for
the nursing care. I cannot see how you can have an
NHS where, by the very nature of the type of person
that they are prepared to fund, ie, the illest, is not
prepared to say “we will have to fund more than
local authorities”; so I suspect care homes are very
happy if a local authority-funded resident who is
paying the local authority rate comes under the NHS
because they should get more money. I do not think
there is any incentive on care homes where the
person is self-funding and they are getting more than
the NHS would be prepared to pay. I am quite sure
that homes must think, “if I put in for self-funding
we are not going to get as much money for that
person”. At the moment, as I say, the NHS either
pays all or nothing, so we have been informed by the
Department of Health. Therefore it becomes really
diYcult in those situations. I would be very reluctant
to say “let us go down the third-party top-up route”
because we have already had problems with that. I
think it needs to be very carefully worked out with
the care homes what exactly the NHS is funding and
what they are prepared to pay, and they should be
prepared to pay what is needed. When you think of
the cost of a hospital bed, I cannot imagine that too
many care homes are charging vastly above that,
and most of them will be charging considerably
under that; so even if it is quite an expensive home,
the chances are that it will still be cheaper than
having somebody in hospital.
Q112 Mr Burns: Ms Cream, it is estimated that up to
60% of care home residents suVer from some form of
dementia.
Ms Cream: It is 75%.
Q113 Mr Burns: Thank you. The question is still
relevant. We have been told that the current system
for determining eligibility for fully-funded NHS care
discriminates against people with mental health
conditions, and in particular with dementia. What
needs to be done to ensure fairness and appropriate
inclusion of those who suVer from dementia?
Ms Cream: One of the reasons why we were so
pleased that Barbara Pointon won her case when she
went to the Ombudsman was because it recognised
that the assessment tools in many areas do not
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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams
incorporate psychological and mental health needs
adequately and so the assessment tools need to be
revised. Even most nurses have very little training in
dementia so they are not able to recognise mental
health needs in that group. Improving that
understanding would be extremely helpful and make
a big diVerence. Barbara can give practical examples
of how it is done. The other criteria that we are really
concerned about is the one around “stable and
predictable”. It is probably the one that we get most
feedback on, and anger from carers. If you have
Alzheimer’s you are going to get worse and you are
going to decline, and ultimately you are going to be
in the palliative stage of dementia. Our experience
and feedback from people is that as you decline you
are less likely to be eligible for continuing care,
which is not what you expect. If you are sitting very
passively or lying in a bed, you are perceived to be
easier to care for. We do not agree with that; we
think you need much more intensive support to help
you have a good quality of life. We have had people
go to the Ombudsman who have come oV
continuing care. The other area that is very diYcult
is in the terminal phase. You are eligible if you are in
a terminal phase of a condition and it is a very short
period. When you have dementia, it is very diYcult
to say when that period starts, but also it may last for
a very long time, but your needs are the same. If you
are getting good care at home from your family
members, your relatives, you are almost penalised
and you are not getting the support from a nurse. We
have people who say, “I am looking after my
mother; she is doubly incontinent, cannot
communicate; she is in a bed and needs a hoist and
has swallowing diYculties” and they are told, “your
care is not healthcare; it is just social care” or “it is
not a primary health need” or “your mother is not ill
enough”. Those are very, very common complaints.
Q114 Mr Burns: Ms Thompson, can you just clear
something up for me because there seems to be some
confusion and you might be the best qualified to
answer. We know that in Scotland there is greater
across-the-board provision for long-term care for
citizens, and it tends to go under the generalised term
“free long-term care” in Scotland. You see in this
country people calling for free long-term care based
very much on the Scottish example. Does that mean
total free long-term care so that if my mother were
to go into a residential home then there would be
total free care for her; or is it only parts of the care
and the package that is actually free, and the
individual or the individual’s family, still subject to
assessment, has to pay some money out?
Ms Thompson: That is why I said at the beginning it
is very diVerent, what is the personal care and what
is the continuing care. In Scotland at the moment if
you are in a nursing home you get £210 a week and
if you are in a residential care home you get £145 a
week. But you have still got the rest of the hotel costs
to pay for. That is the big diVerence. It is interesting
because since they introduced free personal care into
Scotland, those figures have not gone up, and it was
introduced in 2002. By the very nature of the way
care home prices are going up—in fact it was
interesting because at the time when the free
personal care came in in Scotland, there was a long
ongoing dispute between COSLA and the various
care home organisations, and they re-negotiated the
fee levels and the fees went up by quite a lot; but
although the total fees went up, the amounts put into
the free personal care and additional to the nursing
care did not go up accordingly. That is why I think
there is a real problem about—does more and more
become the hotel costs and less and less becomes free
personal care? It is quite a diYcult system. If you are
talking about free personal care, you are talking
about the person meeting their hotel costs; but I do
not know whether you would look at a set hotel cost
that everybody would pay and nothing more, and
then whatever is above that must be personal care.
We have started with looking at the total costs of the
home and you lop oV a bit for personal care and a
bit for nursing care, and whatever is left the person
has to pay. If you are in a care home that costs £700
a week, getting £210 personal care still means that
you are paying an awful lot for the hotel costs.
Q115 Jim Dowd: What is the average cost for a
resident in a nursing home or care home in
Scotland—what proportion is provided of the bill
from the personal care—
Ms Thompson: Obviously, care homes do vary a lot
in Scotland as well, but I think probably about £400.
This is oV the top of my head, and I can get some
figures for you if you want. You are still probably
talking about over half being for the hotel costs. As
well you have to remember in Scotland that they do
not get the attendance allowance, whereas selffunders in England get attendance allowance. In
England you could get £125 worth of nursing plus
about £60 of attendance allowance; whereas in
Scotland you get £210 through personal care but you
do not get £60, so you get less in Scotland than you
do in England at the moment.
Chairman: It is not as clear as people think.
Q116 Jim Dowd: So they are only £25 better oV.
Ms Thompson: Some of them are worse oV. You
have to be very careful about this terminology.
Q117 Mr Burns: There is a lot of confusion in this
country, and I think over the next six weeks I think
there will be even more confusion and I would like
to have it clarified and on the record. Do you think—
and this does not necessarily reflect my view—that
there should be a hotel cost component within
continuing care?
Ms Thompson: I think it would be very diYcult to
introduce because obviously we have the free NHS,
and if your primary health needs are health needs it
is a diYcult thing. People already feel that by stealth
the Health Service has withdrawn considerably. You
have only got to look at the number of beds that
have been lost over the last 30/40 years. People who
would have been looked after in a hospital now are
not being looked after in hospitals.
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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams
Q118 Mr Burns: That raises another point that has
just occurred to me. Do you remember about four
years ago, rightly a decision was taken to introduce
free nursing care, because logically the Health
Service should have been picking up this bill years
ago?
Ms Thompson: Yes, 2001.
Q119 Mr Burns: Were you then as confused and
surprised as I was by October of 2001, when one
discovered that it was not going to be what we
understood was free nursing care, but actually bands
that restricted the amount of money? Did you
always expect that?
Ms Thompson: No, I did not always expect that. I
was certainly involved in the discussions, and at the
time we were saying it ought to be one band—the
diVerence between what residential care costs and
what nursing home care costs—but we were told that
that could not happen, which is why they ended up
with the banding system. Obviously, they have got
bands in Wales and in Northern Ireland. I am not
saying that the amounts they pay are adequate there
either. The bands have stayed pretty much the same
and have not gone up by very much, and they are
remarkably low. When you think of the type of
people who are in nursing homes, we were very
surprised how low the figures were, and looking at
what they were expecting nursing homes to do—to
meet someone’s complex, 24-hour nursing needs, the
home is given £125 for that. The other thing that
really did come as a very nasty shock to everybody
was in 2001 when the people who were self-funding
got the so-called free nursing care, which is not
called that now—it is now called the NHS
Contribution—and all that happened was that the
homes put their price up by whatever. We still get
letters about that. People are so, so angry about that.
It really has not made a lot of diVerence.
Q120 Dr Naysmith: Is there anything we can do
about that? I have written to the Minister on a
number of occasions when people have said that this
should not be happening and this is disgraceful but
nothing happens.
Ms Thompson: We certainly took it up with the
Minister at the time. We were told that because they
were self-funders it is a contracts issue. Somebody
has already said that self-funders really get the raw
end of the deal here, and I would say that is very
much the case because they have to negotiate their
own contract. Although there has now been slightly
more clarity brought into the care home contracts
whereby they have to say which is nursing and what
is personal care and what is the hotel cost—
Q121 Dr Naysmith: That is statutory now, is it not?
Ms Thompson: Yes, but we still find that it does not
always happen.
Q122 Dr Naysmith: When did that come in?
Ms Thompson: It came in in July or June of last year.
I can check that. People are still finding—in one of
the case studies I mentioned in our response, the
person who went to find his wife was actually in an
ambulance waiting to go into a care home—he had
not decided which are home she was going to go into,
by the way, and he was told by the care home that
the fee would be £450 a week. Then when eventually
her £125 was paid, the fees went up by about £125;
so—
Q123 Dr Naysmith: That is exactly what happened.
That is what I am getting at. That happens quite a
lot.
Ms Thompson: Yes. We still get a lot of letters
about that.
Q124 Jim Dowd: It has happened, past tense,
because it was when it was introduced, was it not,
that everything just simply moved up by a large
margin?
Ms Thompson: It is still not made all that clear to
individuals, whether or not the fee that they are
charging includes what the nursing contribution is
going to be, or whether it does not include it.
Q125 Dr Naysmith: I am talking about the situation
where somebody comes out of hospital and
negotiates a fee for a nursing home, and then later
their assessment comes through saying there is so
much money for it, and the nursing home just takes
the money.
Ms Thompson: Which is why it is so important that
the assessment is done when they are in hospital so
they know how much they are going to get and what
band, and whether or not they are going to get
continuing care. In the case that we quote, the
person went into a care home on 28 September; they
only wrote on 21 September to say, “you need to do
an assessment for continuing care” and every one of
the assessments was signed oV after the person had
gone into the care home, and some of them were
signed oV in November. This is one of the big
problems that you have with access, knowing
whether you are going to get continuing care before
you go into the care home—and the care homes need
to know as well because they should be better funded
for people who need continuing care.
Q126 Dr Naysmith: This was covered very well in the
previous session, retrospective review and all the
problems with it, and a couple of you in evidence
have said there were problems, but do you think it
was covered, because most of you heard it in the
previous session? Is there anything you would like
to add?
Ms Williams: You were asking whether this is the
full amount they should have been oVered. We
certainly advised a couple of families to seek more
money, and they decided not to because it had just
been so traumatic. This week, when I knew I was
coming here, I rang round the Bureau quickly, to
find out what was happening very recently. One of
the clients in Cheshire has just settled for £16,000,
and we feel it should be considerably more money
than that. The son said, “My Dad had started the
process whilst he was alive”, and they felt they had
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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams
won the token that Dad was right. They had got
£16,000 and they just cannot be bothered facing any
more of it—and this has taken five years.
Ms Thompson: I would have some real concerns
about the robustness with which some strategic
health authorities have trawled. When you are trying
to talk numbers and how to reflect it, it is really
diYcult to do that, because if you do not do much to
find out who is out there you might end up only
getting the really obvious cases coming your way. If
you do an awful lot and get lots of other people, then
the percentage of cases that get continuing care
might be much lower. Certainly people in residential
care homes and people at home have probably
missed out because there is nobody who is really
responsible for making sure and keeping a weather
eye on whether or not they now fall into continuing
care criteria.
Q127 Chairman: Going into working men’s clubs
seems the best way!
Ms Thompson: Yes, but not everybody goes there.
Mr Wheatley: The process is long-winded and very
painful for people. A lot of the work that is going on
in the ICAS bureau is detailed casework and
complex over years. There are review stages and
complaint stages to the process, and there is lots of
batting backwards and forwards between primary
care trusts and strategic health authorities. Trusts
are not bound to follow the outcome of reviews.
There is a bit of confusion over which cases go to the
Health Commission and which cases ought to go to
the Ombudsman. There is a poor evidential base for
doing the reviews and lack of clarity about what is
admissible, and poor decision-making right the way
through. I think we are talking about a process that
it is diYcult for health professionals to understand;
but it is almost impossible to explain to people what
the basis for review is; and any policy grounded on
those diYcult foundations is bound to fail.
Ms Pointon: From the point of view of the carer,
fishing out all the paperwork for retrospective
review, which I had to do going back seven years—
I am a squirrel and I found it all, but it took me hours
and hours and hours to get it into order to present
the case to the panel. Full-time carers, 24/7 carers,
just do not have the energy or sometimes they just do
not want to have anything to do with this. What
about all those who have got nobody to shout for
them and get it all out? Why I am talking about this
is because I want to stress two things about people
who are being cared for at home. One is the
importance of partnership with the family carer. We
are the people who see most of the patient and know
their needs intimately, and I still cannot understand
why when social services assess the carer of someone
with dementia goes through the assessment and you
sign it, that it is an accurate picture. I found the
health assessments that were done of my husband—
one of them had 14 major inaccuracies in it because
I had not seen the assessment before it was sent in to
the panel, which then decided that Malcolm’s care
was social; but missing from the assessment was the
fact that he had frequent fits, so how could his care
be stable? The other thing about care at home is that
in the criteria please can you make sure that respite
is part of the package? Without proper respite the
carer is going to go down, and when the carer goes
down the whole ship goes down with them and they
become a bigger burden. I know people on the whole
are not being cared for at home, but in the future
they will have to be because of the burgeoning
elderly population, and there will not be the care
home places available. So please keep the care at
home focused in the criteria.
Mr Bradley: I wanted to pick up on the figures you
are giving on the comparison between Scotland and
England in terms of home costs and contributions,
and if you could send us a note on that it would be
very helpful.
Chairman: Thank you all for an excellent session.
We are most grateful to you, particularly you Ms
Pointon; it has been very helpful having you here.
Memorandum by Royal College of Nursing (CC 21)
Summary
— Whilst the RCN welcomes the proposed national framework for eligibility criteria, we consider
the scope of the criteria to be only part of the problem. The criteria must be altered to reflect
psychological needs and must reflect the level of nursing care required.
— Access to funding must be based on a patient’s need, and the process of determining eligibility
should focus on rehabilitation rather than a patient’s dependency.
— There is a need to account for the lack of choice exercised by patients in NHS continuing care
services. It is RCN members’ experience that patients currently have limited choice over access and
provision of services.
— The definition of nursing in the Health and Social Care Act 2001 needs to be reformed as the
current definition does not cover the time spent by a care assistant, delegated by a registered nurse.
— The process of review and restitution has addressed some financial concerns of patients, but there
remains a need to recognise the emotional impact on patients and carers, as well as the excess
burden on nursing staV.
— The link between NHS continuing care and the top band of funded nursing should be re-examined
to better reflect consistency as the boundary is currently unclear.
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1. Introduction
With a membership of over 370,000 registered nurses, midwives, health visitors, nursing students, health
care assistants and nurse cadets, the Royal College of Nursing (RCN) is the voice of nursing across the UK
and the largest professional union of nursing staV in the world. The RCN promotes patient and nursing
interests on a wide range of issues by working closely with Government, the UK parliaments and other
national and European political institutions, trade unions, professional bodies and voluntary organisations.
The RCN warmly welcomes the Committee’s inquiry into the issue of NHS continuing care. Many of our
members work directly with patients who have been denied access to funding for NHS continuing care or
experienced inequity as a result of the assessment process. Our members work in a variety of settings
including care homes, hospitals and the community and experience at first hand how distressing seeking
funding for NHS continuing care can be for both patients and their families. The RCN is conscious of the
close inter-relationship between NHS continuing care and the registered nursing care contribution (funded
nursing), and for this reason some of our evidence relates to both policies.
2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
2.1 The RCN understands the Minister’s statement to mean that he has recognised the need for further
work to ensure that those older people (and indeed other patient groups such as children, those with learning
diYculties, mental health needs and young people with physical disabilities), who are eligible for NHS
continuing care receive it. We understand that the intention is to achieve consistency and fairness in the
development and application of NHS continuing care criteria. Whilst the focus is on NHS continuing care
we hope this work will also address the many problems with funded nursing, as outlined in our evidence.
We also understand that the Minister has acknowledged the need to significantly improve the information
available to patients and their families to ensure that they understand the criteria and how they are applied.
2.2 Additionally, we hope that the Minister’s statement will result in greater participation of clinicians
in the decision making process. For example the panels, which make the final decision on a patient’s
eligibility for NHS continuing care, should be made up of clinicians who have the appropriate knowledge
and skills to make informed decisions and cases should be presented by the assessing clinician. At present
many panel members seem to be finance or commissioning directors.
3. How the Changes will Build on the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
3.1 The RCN is pleased that there has been recognition of the need for greater consistency and fairer
access to NHS continuing care and welcomes the move towards a proposed national framework for
eligibility criteria. We very much hope that this will go some way towards addressing the current diYculties
experienced by patients in accessing funding for their care.
3.2 However the RCN believes that the scope of the criteria is only part of the problem. If the criteria are
changed to reflect a national framework, access to NHS continuing care will remain restricted for some
because of the manner in which the criteria are applied. In particular the criteria need to reflect a much
greater recognition of the needs associated with emotional and psychological wellbeing. This particular issue
was highlighted in the Health Service Ombudsmans report in February 20032. Currently the focus of the
criteria for both continuing health care and funded nursing is dominated by physical health needs. Because
of this many older people who have dementia or other mental health conditions are unable to access funding
as mental health needs are often defined as personal care. The eligibility criteria need to be reformed so as
to reflect the true nature of care required.
3.3 Example: Mrs T was diagnosed with Alzheimer’s dementia. She had seriously impaired
communication abilities and was aggressive. She fell frequently, sometimes between three to eight times a
day. She hallucinated and had major problems in terms of eating and drinking. She needed help with all
normal activities of daily living; she needed constant review of her medication and was assessed as requiring
continuing health care. However this application was turned down by the continuing health care panel. This
case highlights the inequity which pervades the system for those who have mental health needs. If the
eligibility criteria took into account mental health needs, we believe Mrs T would have been eligible for NHS
continuing care.
3.4 Similarly, the RCN believes that the changes to continuing health care criteria will not resolve wider
problems around access to care, unless there is far greater agreement about what constitutes health care and
what constitutes nursing care. Example Mrs C and Mrs E are both residents in the same primary care trust.
Both women are severely disabled by strokes with swallowing diYculties. They were separately assessed as
eligible for NHS funded continuing care, to be delivered in their own home. In Mrs C’s case, a 24 hour
package was delivered, with two carers provided during the night and most of the day. In Mrs E’s case, carers
provided four visits per day, plus a sitting service each morning. Both Mrs E and Mrs C required similar
2
The Health Service Ombudsman Report on NHS funding for long term care of older and disabled people, February 2003.
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levels of assistance with turning and pressure relief at night yet one received two carers and the other did
not. Cases such as these are not uncommon and reflect the confusion which exists around determining what
constitutes nursing care. Nurses report their increasing concern and distress that patients with clear nursing
needs are being denied the care that they require due to the criteria used to determine both continuing health
care and funded nursing. As a result this matter has now been referred for debate at RCN Congress in
April 2005.
3.6 Once a nursing assessment is carried out to determine a patient’s eligibility for NHS continuing care
funding, recommendations are made to a funding panel. RCN members advise us that in some instances,
panels are overturning recommendations made by nursing staV because of local financial constraints. Our
members are concerned that access is being driven by budgetary concerns rather than need which is both
demoralising for staV and upsetting for patients. The RCN has been advised by a local practitioner that in
one locality in the East of England social services staV are advised not to apply for funding for their clients
as it is not available. Elsewhere, experienced clinicians report that their clinical assessment is overturned by
panels with no explanation being oVered to either the clinician or the patient. The RCN strongly believes
that a patient’s need should be the basis for determining eligibility.
3.7 Example: Mrs Jones is a general nursing home resident funded by social services with NHS funded
nursing care. She has severe osteoporosis with curvature of the spine exacerbated by radiation treatment
given 30 years previously for another condition. She experiences uncontrollable pain has TB, angina,
diverticulitis, a prolapsed uterus, a gastric ulcer and glaucoma and a previously fractured hip. She was
assessed by the NHS funded nursing care team and a high determination for nursing was recommended due
to the complexity of the past medical history and diYculties in delivering her nursing care. The trigger
questions for continuing health care indicated that continuing health care funding was required. However
her application was turned down merely because the patient did not comply with her pain control and
therefore it was felt that continuing health care was not required.
3.8 The RCN believes that the current process for allocating funding for NHS continuing care does not
reward best nursing and therapy practice, a problem which will not be addressed under the current
proposals. At present the process focuses on the patient’s dependency and stability and as a result fails to
recognise the complexity of a patients condition. Instead the focus should be on a rehabilitation/re
enablement approach, which seeks to maximise a patient’s potential3. The RCN also believe that the process
of funding fails to recognise the positive contribution which expert care can have on a patient’s stability. In
the interests of best practice this should be rectified in the process for accessing NHS continuing care
funding.
3.9 Example: Mr Smith, previously a long stay patient in a psychiatric hospital, has chronic obstructive
airways disease, schizophrenia, frequently falls and has a history of choking as he gulps his food. He also
has episodes of destructive and aggressive behaviours which it is thought are due to flashbacks from his war
experiences. The assessing nurse considered that he should be in receipt of continuing health care funding
due to his extensive nursing needs. However this was turned down because in the opinion of the panel: his
episodes of aggression only lasted for 15 to 30 minutes and his very complex care needs could be met by a
care assistant. If expert nursing is not available to patients such as Mr Smith then their instability is likely
to increase.
3.10 Furthermore, a Department of Health commissioned evaluation of funded nursing4 highlighted the
potential for “added value” in terms of prevention, treatment, and rehabilitation of residents, building on
improving relationships between care home staV and PCTs. Yet in spite of this the focus for funding
continues to driven by the dependency of the patient.
Example: Mrs L was reviewed as requiring some rehabilitation which included a proactive approach to
seeking solutions to her posture, positioning, eating and drinking and stimulation in general. Previously Mrs
L had been nursed in bed for nearly a year and could not eat orally as she could not sit upright to eat and
drink. She was therefore fed by tube. She had no physiotherapy as this was not provided to nursing homes
and the PCT would not accept responsibility for providing adequate static seating at a cost of £1,000. Had
the funding been available, Mrs L would have been able to leave her bed, and eat and drink in an upright
position, thereby facilitating her rehabilitation.
4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for their Long Term Care
4.1 The RCN welcomed the retrospective review of past funding decisions as an attempt to address the
many diYculties faced by patients. Whilst the review has partly addressed the financial needs of those
patients who were wrongly denied funding, a number of other issues still need to be addressed.
4.2 The emotional and physical strain on patients and their families engaged in trying to access funding
for NHS continuing care is for many, immeasurable. Nurses have experienced significant distress when
trying to explain to patients and their families why funding is not available for services which they believe
3
Wild D & Ford P (2001), “An Evaluation of the Registered Nursing Care Contribution Tool for the determination of residents”
needs for registered nursing care when in Nursing Homes. Department of Health, London.
4 Szczepura A, Davies C, Wild D, Johnston I, BiggerstaV D, Ford P, Vinogradova Y. NHS Funded Nursing Care in Care Homes
in England: An Initial Evaluation. Centre for Health Services Studies, University of Warwick, Coventry, UK. 2004.
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to fall within the remit of long term nursing. The recent panorama documentary5 gave powerful examples
of patients who failed to be awarded continuing health care funding and many nurses contacted the RCN
to express their concern and to share similar experiences.
4.3 The RCN believes that the ongoing process of review should operate under an established system
which can ensure that patients’ needs will be met. Primary Care Trusts have diVerent systems in place for
carrying out continuing care assessments, although most employ a team of nurses to administer both
continuing health care assessments and registered nursing determinations. We have learnt from our
members that in practice this can mean that nurses have to work between 8 and 20 extra hours per week to
administer the system. This time is unpaid and often unacknowledged. The result of the review and
restitution process has been to significantly increase nurses’ workload and if patients’ needs are to be
adequately addressed, proper systems for review, monitoring and responding to changed needs must be
resourced and put in place.
4.4 The level of demand for care home beds remains very high, however market forces are reducing the
number of available beds for nursing care. The market has declined for care homes due to the funding
situation and beds are being taken out of the market, despite the need for beds in some areas being
undiminished. The RCN conducted a Care Home Survey in 2004 and found that a fifth of respondents were
concerned that the care home in which they worked may close due to financial pressures6. Similarly, we are
aware that a major care provider in England is struggling to keep their nursing provision available as they
are running at a loss for nursing services. In practice this means that patients who have achieved restitution
may not actually be able to access care home services in their area.
4.4 The RCN considers that there is a disparity between health and social care definitions of health and
nursing care needs which the review process has highlighted but not addressed.
Example: Mrs Brown has extensive pressure sores, is incontinent of urine, has a urinary infection, is
seriously underweight, and is unable to drink or eat without help and supervision. Social care staV assessed
the patient as requiring social care yet nurses assess the patient’s needs to be nursing. The RCN believes that
such disparity is primarily caused by budgetary constraints, but is exacerbated by the definition of nursing
in the Health and Social Care Act 2001. The Act requires that nursing which is delegated be reconstructed
as social care and subject to means testing. As a result nurses and social workers face daily tensions in
defining their interventions and associated budgets.
5. What Further Developments are Required to Support the Implementation of a National
Framework
5.1 The RCN believes there is an urgent need to amend the definition of nursing as outlined in the Health
and Social Care Act 2001. The current definition does not cover the time spent by a care assistant providing
care which has been delegated by a nurse. In practice this means that many patients do not receive funding
for care which has been delegated by registered nurses. Such a process creates a false division in care and
fails to recognise the nursing accountability for such delegated care. Client groups in other care settings do
not have their nursing defined by the contribution of the registered nurse only. In 1997 the RCN developed
a nursing assessment tool for use with older people7. This tool was oVered to the Department for Health as
a framework to be used when assessing the need for long term nursing in both continuing care and care home
settings. The RCN believes that this tool clearly defines nursing, reflects nursing needs and oVers a useful
way forward in developing further work on what constitutes nursing for older people who have long term
care needs. Use of such a tool would enable nurses to identify nursing needs and achieve accepted best
practice. By focusing on abilities rather than dependency it would also assist in the maximisation of
patient’s abilities.
5.2 The RCN believes it is essential that investment in training and development is allocated for all health
care staV who come into contact with patients who may be eligible for NHS continuing care and funded
nursing. The Health Service Ombudsman has also identified this as a priority and has recommended that
training and development is supported to “expand local capacity and ensure that new continuing care cases
are assessed and decided properly and promptly”8. The process of accessing funding is not fully understood
by many health professionals, and widespread training would help to ensure patients are given as much
support and guidance as possible. It is also imperative that this training emphasises shared values between
health and social care staV so that staV understand the needs of patients and how they can best be met. Allied
to this, there is a need for Strategic Health Authorities and Primary Care Trusts to enable nurses to work
within their professional code of conduct. At present nurses feel that they often have to work within criteria
which fail to recognise best practice and are not in a patient’s best interests.
5.3 The RCN believes that there is a need to develop a new framework for the eligibility criteria
themselves, so as to ensure they reflect the level of nursing and therapy care required. Currently, the
threshold at which the criteria become applicable is too high, meaning that patients with a high level of
5
BBC Panorama, “Fighting for Care”, 18 July 2004.
RCN Care Home Survey 2004, “Impact of low fees for care homes in the UK”.
7 RCN (2004) Nursing Assessment and older people, a Royal College of Nursing toolkit.
8 The Health Service Ombudsman for England, “NHS funding for long term care, follow up report”, December 2004.
6
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dependency are only eligible for a low level of funding for registered nursing. For example our members
report that unless patients need daily care from a medical consultant or their condition is extremely unstable
they fail to be awarded funding for continuing health care. This is despite their condition and associated
needs being recognised by nurses as requiring intensive nursing care. Patients requiring continuing health
care should in the first instance undergo a full multidisciplinary assessment upon which any assessment for
continuing health care should be based. The reality is that many patients are still not receiving a full
multidisciplinary assessment.
5.4 Similarly there is a need for the eligibility criteria themselves to be reformed so as to reflect a change
in emphasis to rehabilitation and re-enablement. Currently, the criteria focus on the level of a patients’
dependency. This creates a perverse incentive whereby if a patient’s condition improves, the level of funding
available decreases. Best practice in nursing older people is based on a rehabilitation/re enablement
approach to care9. Criteria which emphasise rehabilitation and re enablement would ensure that patients
receive nursing and therapy services which aim to promote abilities, enhance quality of life and in the longer
term may well result in the need for less care services.
5.5 Strategic Health Authorities and Primary Care Trusts need to be enabled to achieve a cultural shift
in the way that they view access to NHS continuing care and funded nursing. There is a need for a more
global consideration of care needs which explores the full potential of local provision beyond a focus on
clearing beds in acute hospital trusts. In this way the current focus on resolving bed blocking might be viewed
more as a way of providing the best care for patients through providing greater choice that is more patient
focused. Currently the focus on clearing beds means that the needs of patients are not the key determinant
for discharge.
5.6 The RCN believes there is also a need to re-examine the link between funding for NHS continuing
care and the top band of funded nursing. Under the current system, there is a lack of consistency and
understanding about those needs that trigger continuing health care and those that trigger the top band of
funded nursing. The boundary between continuing health care and NHS funded nursing is unclear, which
may be due to similar terminology being used in both sets of criteria. The consequence is that for patients
whose needs place them on the boundary between levels of care, there may be diVerent interpretations
between assessor, patient or carer as to whether the patient is eligible for NHS continuing care funding. Our
members report that some patients who have extensive nursing needs still do not receive funding for NHS
continuing care, nor do they attract the higher band for funded nursing. It would appear that across England
there is a serious lack of consistency over which patients receive funded nursing and which patients receive
NHS continuing care.
5.7 RCN members believe there is a need for the balance to be redressed in the system to account for the
lack of choice exercised in NHS continuing care. Eligibility criteria must promote choice so that patients
can access the continuing health care they need in the location that is best suited to them. This should include
their own homes if they so choose. For instance, current provision does not seem to include special seating
so that a patient can receive appropriate care. Some PCT’s do not accept responsibility for provision of
seating which may be needed in order to provide good postural support or a good position for safe
swallowing. This means that some patients have no choice but to receive care in care homes so that they can
access the kind of seating that they need for health care. Similarly there is a lack of consistency about the
level of care patients who are in receipt of funded nursing can access, as the care received may not be holistic.
Not only does the funding result in delegated care being charged for but also many residents of care homes
are not receiving other services that they may require, eg physiotherapy, speech therapy and occupational
therapy. As a result patients are being denied the opportunity to respond to rehabilitation and an enhanced
quality of life.
5.8 The current situation whereby care home fees exceed the level of NHS continuing health care
contributions also needs to be addressed. In practice this means that the individual pays a “top up” fee to
cover the extra charge which is unfair as it means that inequity still persists at the heart of the system. There
is an urgent need to resolve matters pertaining to the funding of continuing health care. The true cost must
be reflected in the funding allocated to care homes so that they can provide the care which is needed.
6. Recommendations
— The membership of continuing care funding panels should include clinicians with the appropriate
knowledge and skills, to ensure decisions are made on the basis of clinical need.
— Eligibility criteria for NHS continuing care should be reformed so as to reflect a greater recognition
of the patients’ emotional and psychological needs. In addition the criteria should also be reformed
so as to place a greater emphasis on rehabilitation and re-enablement.
— The definition of nursing as outlined in the Health and Social Care Act 2001should be amended
so as to include the care delegated by a nurse to a care assistant.
— Training and development should be made available for all health care staV who come into contact
with patients who may be eligible for NHS continuing care.
9
Royal College of Nursing (2000) “Rehabilitating Older People”.
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— The link between funding for NHS continuing care and the top band of funded nursing should be
re-examined in order to reduce the confusion which currently exists.
— Provision of NHS continuing care services should be reformed so as to allow patients to exercise
a greater level of choice over access to and provision of services.
Memorandum by English Community Care Association (CC 4)
1. The English Community Care Association
The English Community Care Association (ECCA) is the largest representative body for community care
in England. Working on behalf of small, medium and large providers, it speaks with a single unified voice
on behalf of its members and the sector, and seeks to create an environment in which providers can continue
to deliver and develop the high quality care that communities require and deserve. In order to do this, ECCA
embraces the challenges for the short, medium and long term.
Individuals, residents and their families recognise the value of high quality care services. ECCA’s vision
is of a world where the value of independent care homes and care services are understood and promoted by
all stakeholders and funded appropriately, and where people who use these care services have a full range
of choices and the flexibility to select the care home, or services, that most suits their needs and tastes.
ECCA’s core mission supports user choice, empowerment and quality services.
ECCA has an inherent respect for partnerships. It understands the importance of strength, unity and
commonality of purpose. Above all, ECCA has a commitment to the continued role of a quality conscious
independent sector; one that oVers real choice and value for money, and where providers are respected and
treated fairly.
ECCA’s mission is to ensure that high standards of health and social care in the independent sector can
be promoted and protected by:
— Providers having a voice in the strategic direction of future social and health care services.
— Social and health care being properly and fairly funded enabling high quality care for all receiving
care home or other independent care services.
— Regulation being eVective, proportionate and intelligent.
2. Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9 December
2004
ECCA welcomed Dr Stephen Ladyman’s statement on 9 December 2004. ECCA has long called for
consistency of approach with regard to continuing care assessment and funding for residents in independent
care homes. ECCA welcomes any measures that will clarify the system with the ability to be nationally
promoted.
The current system is both diYcult for individuals and their families to understand and to navigate the
system. Residents and their families may turn to care homes for advice and it is also diYcult for them to
understand.
Small and large independent care providers experience a range of problems and a lack of consistency
including the fact that in some areas the NHS did not believe that NHS continuing care could be provided
in an independent care home setting.
3. How the Changes Will Build on the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
ECCA would ask that the Department of Health works with independent providers alongside Strategic
Health Authorities in their work to develop a national approach to continuing care; especially involving
providers that have a wide experience of good practice and diYculties.
In order to achieve a consistent national approach the Department of Health must review each of the 28
Strategic Health Authorities criteria. These must then be compared and contrasted in order to seek
explanations for current variations in the criteria.
ECCA queries whether a national approach would require a national training and guidance framework
in order for people to implement the criteria consistently.
In order to be successful implementers of the new national criteria must have been allocated adequate
time to familiarise themselves with their criteria. They must also have forged all their local networks thereby
involving the independent providers and making all parties aware of the changes and to have given them
the opportunity to question and discuss concerns.
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4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for their Long Term Care
ECCA cannot determine whether the review has been successful as it is not clear how many people should
have been awarded continuing care. The numbers of people who have come forward are however clear, but
this may not be a good reflection of the total who would have been eligible.
Anecdotal evidence indicates that residents and relatives have been reticent in applying believing that:
— they were not eligible because they were not on the higher banding of the Registered Nursing Care
Contribution (RNCC);
— they were in a residential home as opposed to a nursing home;
— they had no awareness that they could apply;
— they did not want to appear money grabbing particularly after their relatives had died; and
— the system was simply too cumbersome.
In addition, care homes themselves may not have had the time to review past cases or encourage residents
and their families to apply for continuing care funding.
ECCA is not aware that the NHS has taken an active stance on contacting existing residents nor
explaining fully the process by which they can ask for a retrospective review for their continuing care
requirements.
5. Further Developments
Good record keeping is essential to ensure that those entitled to continuing care can be identified. It would
be helpful for the NHS electronic system to be joined up with the social care sector and indeed the
independent sector.
The NHS should be required to insure that all independent care homes in its area are made aware of the
new national framework and that care homes are given the opportunity to attend seminars and briefings on
the issue.
The NHS should utilise wider networks to reach individuals for example Care Direct/Link-Age, Social
Workers, those carrying out community assessments, GPs, Citizen Advice Bureaus, Advocacy Groups,
Charitable Networks and Financial Advisers. All these bodies should have access to written literature that
they are able to distribute.
ECCA would welcome the opportunity to disseminate details of the criteria to its members and in the
wake of the original Ombudsman’s report in February 2003 ECCA (formerly the Independent Healthcare
Association) produced the attached briefing paper (Appendix I).
Memorandum by British Geriatrics Society (CC 19)
The British Geriatrics Society
The British Geriatrics Society (BGS) is the only professional association, in the United Kingdom, for
doctors practising geriatric medicine. The 2,200 members worldwide are consultants in geriatric medicine,
the psychiatry of old age, public health medicine, general practitioners, and scientists engaged in the research
of age-related disease. The Society oVers specialist medical expertise in the whole range of health care needs
of older people, from acute hospital care to high quality long-term care in the community.
Geriatric Medicine
Geriatric Medicine (Geriatrics) is that branch of general medicine concerned with the clinical, preventive,
remedial and social aspects of illness of older people. Their high morbidity rates, diVerent patterns of disease
presentation, slower response to treatment and requirements for social support, call for special medical
skills. The purpose is to restore an ill and disabled person to a level of maximum ability and, wherever
possible, return the person to an independent life at home.
The Society is delighted to be given the opportunity to contribute to this debate and would comment
as follows:
Summary
The BGS recommends:
1. Regardless of the source of funding no individual should enter a system of domiciliary or institutional
care without prior exposure to an eVective system of specialist and multidisciplinary assessment backed up
by appropriate treatment and rehabilitation.
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2. Partnerships must be set up between, district nursing, primary care, general practice, therapies, old age
psychiatry and geriatric medicine to recognise and meet the needs of vulnerable older people receiving
continuing care.
3. Older people in care homes need to be recognised by practitioners as a discrete population and a case
management system set up to meet their needs.
4. Enhanced, appropriate education, training and development must be in place for practitioners caring
for the most vulnerable older people in continuing care.
5. Clinical governance systems must be in place for all providers of NHS continuing care.
1. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman
1.1 The BGS welcomes the development of a national consistent approach to assessment for fully funded
NHS continuing care. The recent follow up report by the Ombudsman in December 2004 identified the lack
of national guidance as an impediment to eVective restitution for previous failures to grant NHS continuing
care status.(1)
2. How the Changes will Build on the Work Already Undertaken by the Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
2.1 The considerable commitment shown by the Strategic Health Authorities, Primary Care Trusts and
local authority partners to securing agreement to establish workable arrangements should contribute to the
implementation of national guidance. We are of the opinion that the lack of national guidance in England
and Wales has resulted in hardship and injustice for some individuals and that a fair and transparent system
of funding should operate across the country.
2.2 The BGS is in complete accord with the statement issued by the Ombudsman in December 2004 where
she recommended the Department of Health should lead further work in six key areas (1):
— “Establish clear, national minimum eligibility criteria which are understandable to health
professionals and patients and carers alike.
— Develop a set of accredited assessment tools and good practice to support the criteria.
— Clarify standards for record keeping and documentation both by health care providers and those
involved in the review process.
— Support training and development to expand local capacity and ensure that new continuing care
cases are assessed properly and promptly.
— Seek reassurance that the retrospective reviews have covered all those who have been aVected.
— Monitor the situation in relation to retrospective reviews using the lessons learned to inform the
handling of continuing care assessment in the future.”
3. What Further Developments are Required to Support the Implementation of a National
Framework?
3.1 The BGS welcomed the Department of Health’s response Policy and guidance issued on Continuing
Care Assessments and Hospital Discharge in February 2004 which clarified the assessment procedure and
stressed the importance of communication with families by professional members or clinicians(2). We were
pleased that the importance of the single assessment process, involving the multidisciplinary team as well as
the input of a Consultant Geriatrician, was recognised. We see this as a way of facilitating the
implementation of eVective comprehensive geriatric assessment. However the BGS believes that these recent
changes will not bring about suYcient change to the care of frail older people. Our opinion is that:
“Regardless of the source of funding no individual should enter a system of domiciliary or
institutional care without prior exposure to an eVective system of specialist and multidisciplinary
assessment backed up by appropriate treatment and rehabilitation. By maximising an individual’s
health and functional capacity their need for and usage of expensive prosthetic long term care can
be minimised. Comprehensive geriatric assessment is the cornerstone of eVective health and social
care for older people and has been identified as a major clinical advance that systematically reduces
the disability and institutionalisation of older people.”(3)
3.2 The BGS welcomed The Department of Health’s most recent guidance in 2004 stating that fully
funded NHS continuing care may be provided, subject to clinical advice, in a range of settings: a nursing
home, hospice, at home or in hospital(2). It has considerable reservations about the ability of primary and
community health care to meet the needs of these extremely vulnerable patients without systems, setting up
partnerships between, district nursing, primary care, general practice, therapies and geriatric medicine.
3.3 Older people designated as requiring Social Service funded care in homes often have very similar and
overlapping needs as the patients requiring NHS continuing care. A significant majority of older people in
care homes suVer from chronic neuro-degenerative diseases such as Dementia, Parkinson’s disease and
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Cerebro-vascular disease (Strokes). It is thought that at least 60% of care home residents suVer from
Dementia. The BGS in a joint publication with The Royal College of Physicians and The Royal College of
Nursing argued in 2000 that unless older people in care homes are recognised by practitioners as a discrete
population their health needs will be over-looked(4). Enhanced, appropriate training and development must
be in place for practitioners caring for the most vulnerable older people in continuing care.
3.4 The National Minimum Standards for Care Homes made the NHS responsible for meeting the
nursing, medical and rehabilitation needs of residents and in addition requires the NHS to provide other
services including chiropody, dentistry and audio logy and optician services.(5) Despite this a recent national
study demonstrated the diYculty care homes experience accessing expert advice from specialist old age
psychiatry, geriatric medicine, speech and language therapy, physiotherapy, pharmacy and rehabilitation
services, podiatry, dietetics, district nursing, and general practice. The study demonstrated variations in the
range of services oVered by GPs, as well as marked regional variations in the availability of NHS services.
Only 83% of homes could contact a geriatrician when needed, usually via a GP, and only 6% could contact
one directly. Charges were made for occupational therapy in 38% of homes, physiotherapy in 39% of homes
and speech and language therapy in 29% of homes. These people have equal rights to health care and the
survey demonstrates inequity of care as the most vulnerable have become the most excluded(6). Clinical
governance systems should be set up to ensure equal access of care.
3.5 General practitioners are unhappy about taking on what was an extra and complex addition to their
already busy workload. Frail older people who were once the care of geriatricians became the responsibility
of GPs and the already over stretched community and rehabilitations services. They found the increasing
workload from care homes diYcult to manage. For successful NHS continuing care and health care in care
homes the recommendations made by the joint report in 2000 must be implemented(6).
3.6 The recommendations are as follows:
— “To introduce a specialist gerontological nurse specialist for homes.
— To introduce a General Practitioner with a special interest.
— To include a specialist pharmacist for homes.
— To increase inputs from professionals allied to medicine.
— To introduce regular multi-disciplinary consultant sessions and consultant visits to homes.
— To improve care planning through the introduction of formal approaches.
— To develop teaching nursing homes in each region.”
3.7 The recent Department of Health’s publications on the management of long term conditions and case
management(7), (8), (9) provides the Primary Care Trusts with an opportunity to review and recognise the
needs of this vulnerable, not homogenous population with long term conditions resident in care homes.
They are uniformly old and the vast majority have cognitive impairment. The BGS recommends that
residents of care homes could benefit from a case management system which has been demonstrated to be
eVective in Care Homes in the USA(9). This would improve care planning with end of life care a particular
priority in nursing homes.
3.8 These methods of providing care to our most vulnerable and frail older people could not fail to raise
the quality of NHS continuing care. National guidance from the Department of Health recommending and
supporting these developments would reduce the geographic variation in the provision of NHS continuing
care as well as the ability of those older people to access appropriate health intervention wherever they
are living.
The Society would welcome the opportunity to give oral evidence.
References
(1) The Parliamentary and Health Service Ombudsman. NHS Funding for long term care: follow up
report. 2004.
(2) Department of Health Continuing Care assessments and hospital discharge London DoH 2004.
(3) Lubel, D et al: British Geriatrics Society Submission of Evidence to The Royal Commission on Long term
Care for the Elderly. BGS; London 1999. www.bgs.org.uk.
(4) Royal College of Physicians. The health and care of older people in care homes. Report of a joint working
party of the Royal College of Physicians, the Royal College of Nursing and the British Geriatrics Society.
London: RCP 2000.
(5) Department of Health. Care Homes for Older People. National Minimum Standards. London: The
Stationery OYce 2002.
(6) Jacobs S , Alborz A, Glendinning C, et al. Health Services for Homes; A survey of access to NHS services
in nursing and residential homes for older people in England. NPCRDC: 2001.
(7) Department of Health. Supporting people with Long Term Conditions. An NHS and Social Care Model
to support local innovation and integration. London DoH. 2005.
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(8)
Department of Health. NHS Improvement Plan: Putting people at the heart pf public services. London
DoH 2004.
(9) Kane, R L, Keckhafer, G, Flood, S, et al (2003) The EVect of Evercare on Hospital Use. Journal of the
American Geriatrics Society 51 (10), 1427–1434.
Witnesses: Mr John Pye, Continuing Care Nurse, Royal College of Nursing Member, Mr Martin Green,
Chief Executive, English Community Care Association, Dr Jackie Morris, Deputy Chair, Policy committee,
British Geriatrics Society, and Ms Jo Peck, Head of Nursing and Clinical Governance, Medicine Division,
University Hospital Lewisham NHS Trust, were examined.
Q128 Chairman: Welcome to our last group of
witnesses. Will you briefly introduce yourselves to
the Committee?
Mr Pye: My name is John Pye, I am presently
employed as Head of the Commission for
Continuing Healthcare for Cheshire and I am here
representing the Royal College of Nurses.
Ms Peck: I am Jo Peck, Head of Nursing for
Medicine at Lewisham NHS Trust.
Dr Morris: I am Dr Jackie Morris. I am a jobbing
consultant geriatrician, and deputy chairman of the
policy group at the British Geriatrics Society.
Mr Green: I am Martin Green, Chief Executive of
the English Community Care Association, and a
trustee of Age Concern England.
Q129 Chairman: Can you say a little bit about the
Association, Mr Green?
Mr Green: We are the largest represented body for
the community care sector in England and we have
about 2,000 residential homes, which represent
about 110,000 beds in membership. Our
membership goes right across the board, so we have
charitable and voluntary sector providers; we have
large corporates and we have quite a lot of individual
small home-owners.
Q130 Chairman: Would you include members of the
National Care Homes Association, or would they be
separately organised from you?
Mr Green: That is a separate organisation, although
we do have some cross-over members and some
people are members of several umbrella bodies.
Q131 Chairman: Can I thank you all for
contributing to our inquiry, and for your evidence
we are most grateful. Mr Pye, I recall, going back
some years, when community care arrangements
evolved from 1981 where people could go into care
or nursing homes and get a top-up from the DSS
system towards the cost. The argument was that that
incentivised people to enter institutional care who
frequently did not need to be in there, because it was
easier to get care in a home than support and care to
remain in your own home from the state. In your
evidence you state that the registered nursing care
contribution framework rewards dependency and
fails to provide any incentives for recovery or
rehabilitation. How do you think this perverse
incentive might be tackled?
Mr Pye: I think it is a perverse incentive, and I like
yourself, Chairman, have been around the Health
Service a long time, and I was party in the early 80s
and 1990s when community care came out. When
the RNCC first came into being it laid down what we
believe was perversity in that we reward people’s
dependency rather than their potential to improve.
If I may, Chairman, I will give you an example of
that in my local area. We have a number of patients
who we have assessed using the RNCC and those
assessments were made on the wards in hospitals and
were high bands. We placed them into our local
nearby nursing homes where they have very good
care, and their dementia has been treated
accordingly. They are now improving substantially,
and we have now gone in and re-banded those
patients and given less finance to the nursing home
to look after them, which has a massive detrimental
eVect both upon the individuals themselves
potentially but also on the business of the nursing
home to try and maintain the same level of standards
which they wish to have. That is the main issue as far
as I am concerned. With the policy we now have, we
have no alternative but to use it as a perverse system;
that if people do oVer over and above what people
generally get, and people do improve and
rehabilitate, we go in there and disinvest and remove
the awards that we have made to the homes.
Q132 Chairman: The whole system basically is
working against rehabilitation and helping people,
moving them towards independence in some
respects.
Mr Pye: Absolutely, and like a lot of initiatives that
have come out quite recently it is a reaction to an
issue and a problem. The reaction to the long-term
commissions report was, “we will fund nursing
care”. That was patently obviously not going to
happen, and we are now not funding nursing care,
we are funding a proportion of nursing care. That
came along as a reaction to the long-term
commission. It also did not take into account the
policy we already had in place for continuing health
care, and the two sides have never married up. I was
listening to previous speakers about the
combinations and the relationship between the
RNCC and continuing healthcare. It was never
thought about when RNCC came out, and we have
ended up with two policies and two procedures
matching in everything including the words, which
places a great diYculty on us within the nursing
sector and certainly within PCTs in trying to
disseminate and make decisions on who funds and
who does not.
Q133 Chairman: You have argued that the changes
to continuing healthcare criteria will not resolve
wider problems of access to healthcare “unless there
is a far greater agreement about what constitutes
health care and what constitutes nursing care”. That
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is at the heart of what we have been talking about all
morning. What do you mean by this? What do you
feel are the implications for patients who practise
and how might we resolve the issue?
Mr Pye: I was kind of hoping that was your first
question this morning, Chairman, to see if we could
identify what was health and what was social care. I
have been in the Health Service 37 years and I am no
closer to finding the answers to what is health and
social care. That is a perversity we have in dealing
with probably our most dependent population.
These people require continuing care. Whether it is
continuing healthcare or continuing social care is a
bit of a red herring really. These are individuals who
previously would have been in a long-stay hospital
under the guidance and supervision of doctors,
consultants and specialist staV. We no longer have
that provision for them. We put them into the
independent sector, and very good as it is, it detaches
them from the National Health Service, and that is
inherently what we have got. We have our most
dependent individuals in the care of non-NHS staV,
with little or relatively small amounts of support and
guidance given to those individuals. You suggested
we move the demarcation line between health and
social care, and I think we need to do that. We need
to look at people holistically and see what their
needs and care needs are.
else gives the same care, it is not. How should we be
recommending that this is altered, if it is altered,
when it is used for the determination of registered
nursing care contribution?
Mr Pye: It is crucial we understand what we mean
by “nursing care”. As a couple of previous speakers
clearly said, they provide quite a high level of
nursing care to their loved ones and their families
and friends. The vast majority of their care is
provided by the mother and father. They carry out
tracheostomy changes; they carry out ventilatory
procedures on their own children. It does not stop
becoming a nursing task simply because the carers
do it, but they do so under the guidance, supervision
and training of the qualified nurses. It does not stop
becoming a nursing task. The 2001 definitions of
nursing care included those tasks delegated and
supervised by nurses; however, when it comes to the
funding issues around that care it ceases to be. The
continuing health care and the RNCC clearly specify
it is the work carried out by registered nurses. If you
are not a registered nurse, you cannot carry out
nursing care.
Q134 Chairman: You also need to have a holistic
professional, and the more I stick around in this
area, the more I think the future professional roles
will be markedly diVerent from what we have now
probably. Doug Naysmith and I have been serving
on a committee evaluating the Draft Mental Health
Bill, and of course the proposal in that Bill is to move
away from the approved social worker role in
sectioning people to the approved mental health
professional because there is a recognition of people
working much more closely together, and in a sense
we are moving towards one professional. Do you see
that as a means of responding to some of the
demarcation problems we have got over and above
the funding issues, but the actual practice of people.
What is your view as to what that future professional
might be?
Mr Pye: That is crucial too. It has happened over a
long period of time. I was a community nurse in
Liverpool way back in the 80s and 90s where we did
merge the carers, the health and social care staV,
because we had those disputes about who gives eye
drops, who washes hair and their feet, and all those
issues. We created a generic worker at that time, and
they are spread round the National Health Service,
the social services now anyway, particularly around
the elderly. The only way forward is to come
together and provide a generic workforce for the
elderly with the specialist people involved in their
care as well. Continuing health care gives an
opportunity now towards the creation of that.
Q137 Dr Taylor: If it is the same duties carried out
by a care assistant or a carer, completely unqualified,
it is not.
Mr Pye: Sure. I guess all care provided by a nurse
does not necessarily need to be nursing care.
Q135 Dr Taylor: Can we explore definitions a little
further, and it is really the definition of “nursing
care”. We have heard from our previous group that
if a nurse gives it, it is nursing care, and if somebody
Q136 Dr Taylor: So we do come down to what our
previous witnesses said; that if it is carried out by a
nurse, it is nursing care.
Mr Pye: Yes. If it—
Q138 Dr Taylor: Any help from the British
Geriatric Society?
Dr Morris: I have always had a problem with this. I
was at a meeting talking about dementia and the
needs of older people with dementia the other day,
and we have major concerns that the most frail older
people are given over to the care of the least trained
and the least qualified to deliver that care. If you
were talking about people with cancer, we would not
be saying this was acceptable, and I think there is a
perverse incentive to give people the cheapest care
and the most untrained care. That is not saying that
in some circumstances it is not very good, and I have
spent lots of time visiting and supporting care
homes, and they deliver amazing care and often in a
much better environment than the traditional longstay hospitals. However, I think we have thrown the
baby out with the bath water. We have documented
in our statement that we think it is the responsibility
of the NHS to earmark and dedicate a specifically
trained group of staV of specialists to support this
vulnerable group of people. As has already been
expressed so frequently this morning, it is very
diYcult to tell who is NHS continuing care and who
is not. Older people in nursing homes and care
homes are very major users—and this has not been
said—of the acute sector, because often their health
needs have not been identified early enough and
sorted out early enough; so this is a problem. The
other thing is that the British Geriatric Society
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would like you to appreciate what is a
comprehensive geriatric assessment. I have been
looking up to make sure that I have the right terms,
but it is very important for everybody to appreciate
that there needs to be a co-ordinated approach to an
older person, where a team of professionals assess an
older person’s health, medical, emotional, cognitive
and functional needs, to identify reversible
problems, to review their medication and allow that
patient and individual to achieve their maximum
potential. This process has been proven to work. It
does not necessarily reduce mortality but it reduces
institutionalisation and improves outcomes. We
think it is very important that specialists are
involved in this process. Often in hospital, the
assessment process leading to continuing care or
nursing home care does not necessarily involve a
specialist geriatrician. As has been described, there
are major problems with how assessment prior to
placement and continuing care is done, and poor
documentation. We believe the system should very
much involve the patient and the carer and that there
should be good documentation. We also think that
you cannot just do one comprehensive assessment;
that assessment and review—there needs to be a
dynamic process. You need to assess people, and
then if the decision is made—and you need to make
sure they have achieved their maximum goals and
potential—you need to take into account the
complexity of their needs and the relationship
between disease, impairment disability and
handicap. I hope I am being clear.
Q139 Chairman: You presumably accept the point
that Mr Pye made, that your assessment process
could have a detrimental eVect on the funding
circumstances of the individual patients.
Dr Morris: Yes.
Q140 Chairman: Have you experienced that?
Dr Morris: There is a perverse incentive to discharge
people before they have reached their maximum
potential. I have always practised health care such
that I would like each individual to really achieve
their maximum potential, and that is our ethos. On
the other hand, if you are short of beds and there is
a flu crisis and there are queues in the medical
admissions unit and A&E departments, you might
want to precipitate the early discharge of somebody
who is not fit for discharge.
Q141 Dr Naysmith: I would have thought very small
numbers of people get the proper geriatric
assessment that you are talking about.
Dr Morris: I would like to put this question back to
you. I think that we need to know. We do not know.
I would suggest that we need to ask you to audit how
comprehensive geriatric assessments are carried out
in this country, because it is a very diYcult thing for
us to do but it could be part of the national
framework.
Q142 Dr Naysmith: You are saying that this should
happen, and it should not just happen when people
are going for assessment for care; it should maybe
happen regularly by general practitioners who can
identify people who are ready for a geriatric
assessment.
Dr Morris: Yes. It should be a dynamic—
Dr Naysmith: So given the number, it would require
a huge increase in the number of geriatricians before
it could even become feasible.
Q143 Dr Taylor: Is it not the comprehensive
geriatric assessment part of the single assessment
process?
Dr Morris: It is supposed to be.
Q144 Dr Taylor: You are saying it just does not
happen.
Dr Morris: It does in some places and does not—it
is a postcode lottery.
Q145 Dr Naysmith: We were told in an earlier
session there would be a social worker there, a nurse
and someone from the PCT.
Dr Morris: Yes. In areas I have been in touch with
recently, some people have panels involving a
clinician, which review the paperwork. Some people
do not have panels. So even in small areas of London
and outside there is a tremendous variation in how
this is performed. The other thing is that we welcome
the NHS improvement plan for managing long-term
conditions, but we would suggest that there is a need
for a case management process. Geriatricians
cannot do it all, as you said, but we need a case
management system to work with the nurses and the
primary care trusts, to set up a system whereby
vulnerable older people can be tracked through, to
identify reversible problems, to make sure they can
access acute care when appropriate and access
rehabilitation when appropriate, and for their
medications to be reviewed.
Mr Green: Dr Morris has mentioned lots of issues
which certainly from the independent sector I want
to pick up on. She mentioned the way in which
assessment was carried out, and particularly that
there were other factors around assessment, and
often they were about whether or not there was a
crisis in beds rather than whether there was patient
need. I also think there are some really big issues
about the continuation of medical support when
people are discharged to either a nursing home or a
care home. Actually, the ability for that care home
and those medical staV and care staV to be able to
function appropriately is often about having a clear
understanding of what the medical need is and also
some ongoing supervision of the case, because as Dr
Morris said, cases change and people rehabilitate;
they develop and change in terms of their
dependency. We need a better interface between the
acute services and those in the nursing home services
so that people can be really clear that actually we are
all about a resource that is there for the patient need.
That is one of the things we have lost. When people
get discharged from the acute sector, the Health
Service often, particularly when they go into a care
home or nursing home, think, “that is our job
finished”. Actually, it should be about continuation
of care for the patient right across the board. The
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other thing I wanted to pick up on was something
Mrs Pointon said. The definer of whether or not it is
medical care or whether it is a social care should not
be who delivers it; you do not need to have a nursing
qualification, but you need some ongoing support
from somebody who might have a nursing
qualification. There are moves towards that, and our
colleague from the RCNN said that, in some other
areas of care, for example in children’s care. You
have a situation where people are doing quite highlevel medical interventions but they are doing them
because they are being well supported by their
community clinician. That does not happen so much
when people are in residential care, and we need a
clearer interface between the role of the acute
services, the role of the community services and the
role of residential services. We need to have that
much more clearly defined, and we also need to look
at how that impacts on commissioning. We talk a lot
about the outcomes and about patient need. We do
not see a lot of intelligent commissioning, the
commissions for outcomes. In terms of the way in
which we need to have commissioning, it needs to be
really focused on outcomes. We need to make sure
the incentives are about enhancing people’s
independence. So a lot of that good work that goes
on in the residential sector, either nursing homes or
care homes, that rehabilitate people and give them
more independence at the moment is not validated.
Often that is because people commission a process of
care based on current medical position rather than
saying “actually the medical assessment says the
potential of the patient is X, and if we commission
intelligently and flexibly, if we get to a point where
they are increased in independence, we need to have
incentives in the system to secure that”.
Q146 Chairman: The incentives are completely
against that from what we have been told.
Mr Green: Absolutely they are.
Q147 Chairman: It is ridiculous.
Mr Green: Absolutely, because the incentive is to
keep the patient at the higher dependency level. The
other issue is that often there are not proper reassessments. Yearly re-assessments in cases of
people who are very frail are not adequate, because
they change in their conditions.
Q148 Mr Bradley: You mentioned the tripartite
relationship between the acute, the community and
the nursing home or potential home. In my
experience, taking physiotherapy, if you are
prepared to take the person back to the hospital they
might get a physiotherapy service. Relying on the
community to come into the home to do that same
thing is extremely limited and patchy, and unless you
do that, then that rehabilitation stops the moment
they come out of the acute setting.
Mr Green: Absolutely. We need to analyse whether
or not those are structural impediments based on the
way in which services work at the moment or
whether the structural impediments are because of
workforce issues and lack of trained personnel. I
think it would be useful to unpick those issues for the
long-term planning approach. Too often we might
say that we need to change the structure, but
underlying where the structure is are some issues
about long-term planning and workforce planning
particularly. If your Committee does anything, it
could also highlight some of those long-term
planning issues as well as some of the “where we are
now” issues and “where we would like to be issues”.
Dr Morris: We emphasised in our report that in a
recent national study published in 2001, they found
that charges were made in 30% of homes for
physiotherapy and 39% of homes for speech and
language therapy, so there is a problem around
people accessing appropriate therapy. Our
recommendations in the Royal College of
Physicians, whom we are also representing, in a
report we did in 2000 was that we would suggest the
introduction of a more multi-disciplinary approach
should be facilitated across the board in homes to
support case managers. As well as that, I think you
need a clinical governance system, and I would
support your suggestion, which looks at outcomes,
including death and mortality. I would be very
interested to know whether there is any information
about outcomes from the continuing care panels
about what happens to people, about death rates,
readmission to hospital and so on, about the panels
around the country and the regional variations.
That would be very interesting and would help us.
Q149 Dr Taylor: Can I go back to the assessment of
the patient in hospital for NHS continuing care,
particularly going to Ms Peck, to tie it down and give
us the detail. Who does it? What are their job titles
at the moment, when you are putting somebody
through this assessment?
Ms Peck: It is still in the multi-disciplinary approach
certainly in our trust. On that team would be a nurse
from the ward, who has obviously been caring for
the patient; and they would contribute to the nursing
side of the assessment.
Q150 Dr Taylor: Would that be a fairly senior nurse
on the ward?
Ms Peck: It could be anybody. We try and get
somebody who knows the patient the best, because
obviously then they can go for the most detailed
report. When the case goes to the panel—and we
have a panel in our patch—the quality of the
assessment is vital. Often a lot of cases get deferred
at the panel stage because the quality of the
assessment is not good enough.
Q151 Dr Taylor: So it would be a staV nurse or a
sister, if you still call them that.
Ms Peck: Yes, we do—just. Then there would be,
depending on the patient, physiotherapy,
occupational therapy assessment, depending on
what the diagnosis of the patient is.
Q152 Dr Taylor: So nurse, OT and/or physio.
Ms Peck: Then somebody from social services
obviously to look at the current home situation of
the patient, and then a doctor would also give their
assessment.
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Q153 Dr Taylor: Who would the doctor be if not
necessarily a geriatrician?
Ms Peck: It would be a physician, so a medical
consultant.
Q154 Dr Taylor: Is that good enough?
Dr Morris: I would question, is it always the
consultant? I would wonder whether the consultant
may designate it to a more junior member of staV.
Having sat on panels for many years, the people who
filled the forms in was variable. I think to be fair it
would often be the registrar.
Q155 Dr Naysmith: Just as it is the registrar or senior
houseman who sees patients at a clinic.
Dr Morris: Yes.
Q156 Dr Naysmith: Lots of people think they are
seeing a consultant but in fact they are not. It is the
same thing.
Dr Morris: Yes.
Q157 Dr Taylor: Should one of our
recommendations be that it should be at
consultant level?
Dr Morris: I would think—consultant level filling
the form in—as a consultant geriatrician filling the
form in?
Q158 Dr Taylor: It is more and more likely to be
because there are not enough juniors about now,
are there?
Ms Peck: We normally have a consultant that signs
the form, but whether the consultant physically filled
in the form—they would normally sign it so their
signature is on the form.
Q159 Jim Dowd: Would that not serve simply to
slow the whole process down?
Dr Morris: I should not think so.
Mr Green: My issue here is not about who signs the
form and what their particular medical status is; it is
about clarifying what is on the form and how much
inquisition has been gone into in terms of whether or
not the patient’s needs have been taken account of.
I would not want to go down the road of necessarily
saying it has to be a consultant. It has to be
somebody who has gone through a process, and
that again raises the issue about clarity and
standardisation in the assessment process. We need
to have that so that if you had somebody who is
appropriately trained, who knew the patient and
understood what we were trying to get at from the
assessment, then it would not matter whether they
were a consultant. I do not try to do Dr Morris out
of a job, but it is just about being clear.
Q160 Dr Taylor: So we have the participants. Who
actually makes the decision about the health and
social care components? How is that decision
arrived at? Who makes it?
Ms Peck: At Lewisham it is made at a panel meeting,
and the panel is made up of members from the PCT,
social care and health and the acute trust; and they
ratify.
Q161 Dr Taylor: The multi-disciplinary team that
has done the assessment would then report to this
panel.
Ms Peck: Yes, they submit the paperwork and then
the panel make the decision about where the most
appropriate destination for the patient would be.
Q162 Chairman: Is this a panel similar to the one we
had described to us in the earlier session?
Ms Peck: I assume so, yes.
Q163 Dr Taylor: Has the introduction of the single
assessment process made any diVerence?
Ms Peck: No, because we are not using the single
assessment process across the board yet. Actually,
we have just had a case that went to panel this week
in Lewisham that had the single assessment, and it
was deferred because the assessment was not deemed
appropriate; so they have now got to go back and reassess under continuing care.
Q164 Dr Taylor: Turning to the registered nursing
care contribution, is assessment for this viewed as a
sort of ladder, that you start at the lowest and work
up; or do you start at the top and work down? How
does it work?
Ms Peck: I am not sure.
Mr Pye: I do not think it is either/or; I think it is
based upon the information provided to the nurse
undertaking the RNCC, who looks at the criteria
within each band.
Q165 Dr Taylor: Would you agree with previous
witnesses that there is very little distinction between
the highest band and continuing care?
Mr Pye: The wording is the same—“complexity;
intensity”—they are both within the high band of
continuing healthcare. Again, it is down to
interpretation.
Q166 Dr Taylor: Is there a space for a very closely
defined group in between those, or do you think the
merge is so inevitable that they ought to be regarded
as one?
Mr Pye: I think they practically are one. There are
some real diYculties in identifying a diVerence
between the two. Again, it is down to local
interpretation at a specific time.
Q167 Dr Taylor: Would that go for all of you?
Mr Green: I certainly do not think there is much
diVerence between the two, and I think it is down to
interpretation. I think there are lots of other factors
that come into play here which are not mentioned,
which are sometimes about the amounts of people
you have at any particular time needing that
particular resource. Nobody comes out and says
that but that is the reality.
Dr Morris: No, the reality is that colleagues of mine
have said, “we are keeping this patient in because we
think they need hospital care and we are not putting
them up to the panel, and they are very frail and very
vulnerable and we think they need to be in hospital”.
They have not gone through any panel; the
consultant has made a decision that that individual
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needs a lot of care. Another consultant however
might say, “I am sorry, we have got to have the beds,
and put them up before the continuing care panel.”
Q168 Dr Taylor: There is a limitation on resources
available outside.
Dr Morris: Yes.
Q169 Jim Dowd: On assessment, do you talk to the
relatives?
Ms Peck: Yes. They are involved in that process,
almost from the very beginning.
Q170 Jim Dowd: They are involved when you said
four people together, making reference to a panel.
At which stage are they involved?
Ms Peck: They are certainly very involved with the
social services component of it, and they will
contribute to the nursing.
Q171 Jim Dowd: But are they actually present when
the meeting takes place, making the decisions?
Ms Peck: No, because each individual does their
assessment on their own, and the form is completed
but each person fills in their relevant bit. Sometimes
it will be done at the team meeting, or elements of the
form, but sometimes it will be filled in by separate
individuals on separate occasions.
Q172 Jim Dowd: Do the relatives see the report
before it goes to the panel?
Ms Peck: Not normally, no, not in acute trust.
Mr Pye: It is worth saying, Chairman, that the
panels do not operate in every area.
Q173 Chairman: I picked that up from Mr Hill
because I had a good idea it did not happen in my
area. I had never heard of it.
Mr Pye: No, they do not have panels; they have
individuals who make decisions.
Q174 Chairman: Does it in your area?
Mr Pye: We do not have panels in Cheshire.
Q175 Chairman: Is it a north/south kind of thing
because we get the picture that they seem common
in London.
Dr Morris: It is not common in all areas.
Q176 Jim Dowd: Lewisham, which I know very well,
is a relatively small DGA, about 450 beds. On
average how many assessments are you doing in a
month?
Ms Peck: The panel normally hears between six and
10 cases each time it meets, and it meets twice a week,
on a Monday and a Thursday, but that is not just
patients in Lewisham Hospital; that is patients
already in care homes or patients in mental health
trusts, or patients who are in hospitals outside the
borough but are Lewisham residents.
Q177 Jim Dowd: So it is about 20 a week, or up to
20 a week.
Ms Peck: Yes, up to 20 a week.
Q178 Dr Naysmith: Mr Green, is there any evidence
that when a home takes residents from more than
one primary care trust area there is likely to be an
inconsistency of assessment?
Mr Green: Very definitely. It is very interesting when
we talk about things like assessment processes,
which are supposed to be based on individual need,
and then we see block contracting from local
authorities and health trusts about the delivery of a
service. If you were thinking about this in relation to
individual needs and you were going through an
assessment process which said a person has given
needs, you would then look at your resource
package appropriate to those needs and a placement
appropriate to those needs. So there is great
variability in the system, and certainly in relation to
how the individual interpretation happens in
diVerent places. That is where we have not got much
standardisation, and in fact we have postcode
lotteries coming in through the back door.
Q179 Dr Naysmith: That must give rise to problems
where you have some patients in some of your
members’ care homes, where some people are being
well funded and others hardly being funded at all,
but with the same needs.
Mr Green: Absolutely. As the demographics change,
and particularly as there are more people with very
high dependencies because of Alzheimer’s disease
and dementias, there will be even more pressure on
beds. The inconsistencies inherent in the processes
around assessment will then lead to some people
saying “no, I am not going to have your patient in
this establishment because somebody else does a
better assessment process and is prepared to pay
more for more intensive care”.
Q180 Dr Naysmith: Does that happen?
Mr Green: I will not say it is happening now, but it
will happen in the future. It probably is happening.
I cannot quantify that, but I do not think it is
happening to any great extent. I do think it may
happen in the future, and particularly as we are in a
situation where we know the demographics are
going to change. We know there will be increased
numbers of people with very high dependency levels,
some of which may be able to be supported in
supported housing or through community care
packages, but some of which undoubtedly will need
residential or nursing care. If we do not get our
planning structures right now, we will have a great
shrinkage in that available resource and greater
competition for those beds.
Q181 Dr Naysmith: It must follow then that there
will be some residents who have been assessed for a
level of care that is below what you would anticipate
they would need when they are in your members’
homes.
Mr Green: Absolutely. The problem is that often as
well assessments are, whatever anybody says,
resource-bound. For example, if you had little in
your budget then you would spend much longer
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justifying your lower level band because you had to
justify it to yourself and others, whereas if there is
more budget you know you might be more flexible.
There needs to be far more re-assessment on a
regular basis, and that needs to be multi-disciplinary
re-assessment because the reality is that the
dependency levels are such that often people are
placed in their end-of-life placements, and at that
period in a patient’s journey there is a lot of change,
and sometimes quite rapid change. We need a
commissioning process and a resourcing process
that can build flexibility into the system so that
people can have their care needs sometimes turned
up but conversely sometimes turned down. There is
a lack of flexibility at the moment and lack of reassessment.
Q182 Dr Naysmith: You may have heard me refer to
a couple of cases I have where people were not
properly assessed but were admitted to residential
homes on a contract, and when they were
subsequently assessed properly the money that came
just resulted in the home putting the fee up so that it
was of no benefit to the individual at all. Can you tell
us how this can happen and what your members’
oYcial attitude to this is, if you have one?
Mr Green: I think it happens because of underfunding at the initial stage and because the way in
which there is a monopoly commissioning approach
via either health trusts or local authorities means
that homes cannot survive without those contracts
to fill the beds. So they are forced to either make selffunders pay more in order to cover gaps, and then
when an opportunity arises because there has been a
re-assessment of the need—and what has happened
is the need has not changed but the assessment and
the acknowledgment of the resources required has
changed—so the individual would expect to benefit
from that, but the reality is that the care needs are
being now more properly assessed in terms of their
resources. That leads to a very unsatisfactory
position for everyone.
Q183 Dr Naysmith: You can understand why people
would be very unhappy about this.
Mr Green: Absolutely.
Q184 Dr Naysmith: Because the letter comes to them
saying “you are getting so much more money from
the Government” and it is—
Mr Green: Absolutely, and everybody is dissatisfied
probably with the exception of people like the
commissioners, because nobody ever comes into
direct contact with them, so they are not the people
in the firing line, and this was about probably
inappropriate assessment at the start we need to get
this assessment process really clear so that there is a
robust and accountable approach for both the care
needs but also what those care needs cost.
Q185 Dr Naysmith: How often does it happen that
you get this late assessment?
Mr Green: I think it is happening less often now, but
certainly in the past it happened quite a bit. Part of
the problem is the variability of assessment and the
fact that people have not got clear assessment
criteria which is a national one does not help. Of
course, you also get people who cross-reference
around their own families. For example, the motherin-law has one assessment, and they think they are in
a much higher care band, but they get probably more
money than somebody else who they perceive as
being in a lower care band; then they get diVerential
approaches. That does not help the process and it
leaves people, particularly carers and older people
themselves quite dissatisfied. It also leaves providers
dissatisfied because they have to deal with the
understandable upset that that causes.
Dr Morris: I totally agree with everything Martin
said. My concern is that previously in the panels
there was a perverse incentive for the Health Service
to get the social service departments to pay for
everything. This has expanded into the fact that the
acute sector wants to shift everything on to the PCT
and makes it more the responsibility of the PCT.
There is some evidence that some people have been
imaginative and set up systems whereby the acute
sector and the PCT work much more collaboratively
to improve the system of delivery to older people. On
building on this, one of the things that has been
mentioned as part of assessment and as part of my
experience is the incredibly poor documentation
that homes receive when patients arrive from
hospital. They may have got a very complex
assessment, but they will not have got their previous
medical records. They will not have got their
hospital records, their GP’s records. They may if
they are lucky occasionally receive a discharge
summary, because the discharge summary will tend
to go to their previous GP. The homes are left with
a new patient about whom they know nothing, and
they have to then set up a comprehensive system of
care delivery. Building on that, when I have been
into the homes—and I think it is improving—you
often get a system where the GP’s records are in the
GP’s surgery; the care home plans are in the care
home; and the medication lists are somewhere else.
There is not a holistic approach to providing care,
and this needs to be part of assessment and part of
the review assessment, the bringing together of—
Q186 Dr Naysmith: That is clearly something we
need to turn our attention to. To turn it round, in the
previous session we were talking about the
retrospective review, when some people were
complaining about the state of records in some
care homes.
Mr Green: Absolutely. There is an issue about
records generally, and it is a fairly easy issue to
address as long as we get some clarity about what is
required and we build it into a standards regime.
One of the disappointments is that some of these
things should be addressed by things like electronic
patient records, which is costing millions and
millions of pounds but probably will not address the
very points that Dr Morris mentioned. So we have
an opportunity here which has been missed.
Q187 Chairman: We are on the case. You know that,
do you not? We have been for some time.
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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck
Mr Green: There are some issues about records, but
it is very diYcult as well because there is not any
clarity or standardisation about what records need
to keep, and also—
Q188 Chairman: And how long they keep them for.
Mr Green: Absolutely. Dr Morris’s point is very
important, that people are sometimes having to start
from scratch, not knowing the history, when they get
a patient coming through to their establishments.
That is not helpful because you start not knowing
what the history was. So even if you keep the records
for 10 years or do them in the best way, you have
probably got 70 years of patient records that you did
not get to before the patient was admitted to your
establishment, so there are some big issues there.
Dr Morris: I have a suggestion, that you empower
the patient and the carer. I suggest a system whereby
the patient carries their own record.
Q189 Jim Dowd: Mr Green used the very loaded
term “postcode lottery”. How do you reconcile your
desire for greater uniformity with devolved local
priority-setting by PCTs?
Mr Green: It is a real dilemma because you need to
have local priority-setting, but that needs to be
about real priorities, not about budget-led priorities.
For example, one of the issues I have about local
priority-setting is the accountability of what those
priorities are and how you establish which priorities
are going to be for area X, and why they are diVerent
in area Y. I would not have a problem in terms of
the local priority-setting if there was some
accountability and people knew why particular
priorities were for particular areas. The other thing
we need to understand is that local priorities should
be responding to local need, but that does not mean
that some people should be getting better quality
services than others, so there has to be a position
where you say “this is our benchmark of what people
should be receiving in terms of the quality of the
service” and then you build in the local priorities on
to that benchmark rather than just letting it be a
free-for-all, which it is potentially in my view at the
moment.
Q190 Dr Taylor: In a previous inquiry, the delayed
discharges inquiry, we tentatively explored the
possibility of specialist GPs or consultant
geriatricians being attached to care homes. Is there
any mileage in that?
Dr Morris: We would support that. There is an
example of this in the north, in Durham, where they
have appointed a GP practice to take over a group
of care homes. They have also got nurse specialists
to provide a case management system to back this
up. We are exploring this in Paddington where I
work at the moment. But those GPs have had a
comprehensive training programme, the GPs with a
special interest in older people. I think we now call
them practitioners with a special interest.
Q191 Dr Taylor: Are there many community
geriatricians? I know there are very few.
Dr Morris: They are a developing species. There are
community geriatricians and they are a developing
group. What the British Geriatric Society
recommends is that the service that the departments
of geriatric medicine provide need to be
comprehensive. Within that comprehensive service
there would need to be a system of community
geriatrics, which includes attachments for GPs and
nurses to be trained up, perhaps to teach in nursing
homes and so on; so it is about providing a
comprehensive service which includes community
geriatric medicine.
Mr Green: We would support that as well, and we
would certainly support it because it may stop the
practice that happens at the moment that some care
homes and nursing homes have to pay to get GP
services, which is an absolute scandal, because those
establishments are supposed to be in the community,
and the residents should be able to access every other
community service.
Chairman: Thank you for a very useful session. I am
sorry we have kept you so long, but that indicates
that we have had a very interesting session. Thank
you very much.
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Thursday 17 March 2005
Members present:
Mr David HinchliVe, in the Chair
Mr David Amess
John Austin
Mr Keith Bradley
Mr Simon Burns
Mr Jim Dowd
Dr Doug Naysmith
Dr Richard Taylor
Memorandum by the Health Service Ombudsman for England (CC 23)
Background
1. The long term NHS funding of patients (usually elderly and disabled, often, but not exclusively in care
homes with nursing) is usually called “continuing care”, and results in all social and health care needs being
paid for by the NHS, without any form of means testing.
2. In my special report to Parliament in February 2003 (NHS Funding for Long Term Care, HC399) I
recommended that strategic health authorities and primary care trusts should (in summary):
— review the criteria used by their predecessor bodies, and the way those criteria were applied, since
1996, taking into account the Coughlan judgment, Department of Health guidance and my
findings; and
— make eVorts to remedy any consequent financial injustice to patients, where the criteria, or the way
they were applied, were not clearly appropriate or fair.
I also recommended that the Department of Health should:
— consider how they can support and monitor the performance of authorities and primary care trusts
in this work;
— review and clarify the national guidance on eligibility for continuing NHS health care and include
definitions of the terms used;
— consider being more proactive in checking that criteria used in the future follow that guidance;
— consider how to link assessment of eligibility for continuing NHS health care into the single
assessment process and support the development of reliable assessment methods.
3. The Department agreed to all but one of the recommendations made in that report. That
recommendation was that the Department should review their guidance to strategic health authorities on
eligibility for continuing care.
4. According to the Department’s figures, nearly 12,000 retrospective reviews have been carried out, with
20% of these resulting in partial or total NHS funding for the patient. However, in my Annual Report for
2003–04 (HC 703) I expressed disappointment that there had been considerable delays in carrying out the
reviews and that, despite the development of new eligibility criteria for the 28 strategic health authorities, I
still had concerns which I planned to raise with the Parliamentary Under Secretary for Community, Dr
Ladyman. I also said that I intended to publish a further report to Parliament later in 2004.
Further Report
5. In my further report, (NHS Funding for Long Term Care: Follow up report HC144 16 December
2004) I reported that, although there had been considerable eVort locally to retrospectively review cases
fairly and robustly, there had been considerable problems. Complaints to me revealed:
— significant delays in completing retrospective reviews and a lack of capacity to deal with the
number of cases;
— diYculties of interpretation of eligibility criteria (and the Department of Health’s 2001 guidance
on which those criteria were based) to decide who should qualify for full funding;
— confusion about the distinction between continuing care full funding and “free” nursing care—
particularly at the higher band;
— flaws, often systemic, in the way retrospective reviews were carried out; and
— delays in making restitution payments to those found eligible for continuing care full funding.
6. In more than half of the cases my OYce examined we found that the assessments had not been carried
out properly. The problems included poor quality clinical input to both assessment and decision making,
inadequate documentation, failure to consider changes in a patient’s health care needs over time, and lack
of involvement of, and poor communication with, patients, carers and relatives.
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7. Our conclusion was that, while there had been a lot of hard work at local level with examples of good
practice, and the Department of Health had instigated some improvements in respect of ‘new’ continuing
care cases, these developments fell short of the level of guidance and support that was needed by healthcare
professionals in this diYcult area. We recommended that the Department of Health needed to lead further
work in six key areas by:
— establishing clear, national, minimum eligibility criteria which are understandable to health
professionals and patients and carers alike;
— developing a set of accredited assessment tools and good practice guidance to support the criteria;
— supporting training and development to expand local capacity and ensure that new continuing care
cases are assessed and decided properly and promptly;
— clarifying standards for record keeping and documentation both by health care providers and
those involved in the review process;
— seeking assurance that the retrospective reviews have covered all those who might be aVected; and
— monitoring the situation in relation to retrospective reviews and using the lessons learned to inform
the handling of continuing care assessments in the future.
8. I met Dr Ladyman to express my concerns and shared a copy of my draft report with him. I was pleased
when on 9 December 2004 he announced to Parliament that he had commissioned a “new national
framework for the assessment for fully funded NHS continuing care”.
9. I publicly welcomed this initiative and was encouraged when Dr Ladyman wrote to me saying that he
believed his statement went beyond most of the recommendations in my report and that his oYcials intended
to work closely with mine so that the national framework could benefit from our experience.
Further Developments and Subsequent Events
10. To this end, on 17 December 2004 my oYcials spoke at a special meeting (called for and hosted by
the Department of Health) to brief strategic health authorities continuing care leads. We now plan to meet
with strategic health authorities to discuss the problems that we have identified from our caseload of
complaints. The purpose of these meetings is twofold:
— First, to make sure that relatives and carers who complain to us with justification about flawed
retrospective review processes and consequent unsafe decisions have their cases properly reviewed
or reassessed in a fair and transparent way.
— Secondly, to use these subsequent robust reviews as a way of encouraging strategic health
authorities and their trusts continuously to improve their standards in future continuing care cases.
This should ensure that the majority of disputes are properly and fairly dealt with and should
obviate the need for complainants to bring large numbers of justified complaints to my OYce.
11. To date these visits have been generally welcomed by strategic health authorities and have proved
very useful. They have provided a forum for frank and open discussions and we hope that they will help the
health authorities to develop an approach to continuing care that will ensure that past and future cases will
be assessed quickly, fairly and robustly. OYcials from my OYce and the Department of Health have met
to share these experiences and explore the principles that we see as essential to the national framework. We
are also planning a further three-way meeting to include strategic health authorities’ continuing care leads.
Further, at a meeting with the Department on 11 February 2005, it was confirmed to my oYcials that the
new national framework would include national minimum eligibility criteria, backed by suitable assessment
tools, guidance and Directions.
Other important issues
12. In addition, there are two further issues which in our view need to be considered by the Department.
13. First, the resolution of the widespread confusion and misunderstanding of the relationship between
“free” nursing (particularly at the RNCC high band) and fully-funded continuing care. Following advice
from Counsel, we wrote to the Department at the beginning of February 2005 to set out our understanding
of the issues and to seek urgent clarification. We have an increasing number of complaints about this issue.
Carers and relatives claim that, given the similarity of the wording used in both sets of criteria, those who
have been found to qualify for high band free nursing must also meet the criteria for full funding. We are
awaiting a reply from the Department.
14. Secondly, the other theme in current complaints to me is about redress, where it is accepted that
funding was wrongly withheld. My principle is that the individual, or their estate, should be put back in the
position they would have been in had the maladministration not occurred. I am currently considering a
number of cases where the complainants appear to be able to substantiate claims that a house was sold, or
a job given up, to care for someone, as a direct result of the failure to give continuing care funding at the
appropriate time. I am also looking at the interest rate which is used by trusts when paying restitution, and
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at the appropriateness of botheration payments, where the handling of the complaint by the trust or the
authority has been particularly poor. These issues are being taken forward with the Department, rather than
at authority or trust level.
What should be in the National Framework?
15. From our experience, to produce a robust National Framework for continuing care, the Department
needs to:
— create clear, comprehensible, national eligibility criteria;
— develop a nationally validated approach to the assessment and documentation of a patient’s health
care needs to ensure fairness and consistency and enable reasonable and robust decisions to be
made about eligibility for continuing care, which can stand up to challenge and scrutiny;
— provide agreed definitions of criteria used to make decisions, such as “intensity”; and
“complexity”, or, better still, find improved wording to replace them —perhaps through the use
of plain English;
— clarify the situation where health care is given by a non-NHS practitioner, such as a nursing home
employee, private carer or relative;
— review and make recommendations about what is an appropriate decision making body (panel)
for eligibility decisions for NHS continuing care;
— agree a national standard and a set of agreed competencies for NHS continuing care assessors;
— set up nationally organised training for, and assessment of, NHS continuing care assessors;
— initiate a thorough review and secure national agreement about the distinctive diVerences between
“nursing care” and “personal, hygiene and social care” for the purposes of qualifying for NHS
continuing care;
— examine the relationships and diVerentials between NHS continuing care criteria and funded
nursing care criteria and review similar phraseology within both;
— review and clarify eligibility in relation to degenerative conditions which inevitably lead to death
(eg Alzheimer’s Disease); and
— establish a national communications strategy to help all sections of society understand the criteria
for NHS funded continuing care.
Conclusion
16. I very much welcome the Department of Health’s broad commitment to taking the lead in developing
national criteria for NHS funding for continuing care and that this Committee is contributing to the
development of this important area of public policy through its current Inquiry. I hope that the experience
and expertise of my OYce in investigating problems with continuing care over many years will be welcomed
not only as making an important contribution to the establishment of a robust, fair and open system which
will earn the confidence of patients, carers and professionals alike, but also in drawing a line under the
retrospective review exercise when I am satisfied that patients and carers have received reasonable funding
decisions based on robust assessments.
Ann Abraham
25 February 2005
Witnesses: Ms Trish Longdon, Deputy Ombudsman, and Mr Colin Houghton, Head of Continuing Care
Team, examined.
Q192 Chairman: Good morning colleagues. May I
welcome you to this session of the Committee, and
particularly welcome our witnesses. Could I place on
record the Committee’s thanks to you both for
coming before the Committee and for your
cooperation with our inquiry, noting that we have
met informally and we appreciate the time you have
given the Committee on this issue. Would you mind
briefly introducing yourselves to the Committee,
starting with you Ms Longdon.
Ms Longdon: I am Trish Longdon. I am the Deputy
Parliamentary and Health Service Ombudsman. I
should say, in introducing myself, that Ann
Abraham would really have liked to have been here
herself—this is a very important issue and something
in which, as you know, she has a very real interest—
but, sadly, she had a prior engagement which
involved a large number of people that it would have
been very diYcult for her to cancel. So, her
apologies, and also she has asked me to say that if
there is anything she can do subsequently to help,
she would very much like to.
Mr Houghton: Good morning. I am Colin
Houghton, Head of the Ombudsman’s Continuing
Care Team.
Q193 Chairman: Thank you. I think it is worth
saying that I did speak to Ms Abraham and I
understand the circumstances. We are grateful for
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17 March 2005 Ms Trish Longdon and Mr Colin Houghton
her help in this inquiry. Could I begin by an opening
question along the lines I asked with the witnesses
last week. At the heart of this issue is something that
has dogged our discussions on policy for many,
many years, which is how we establish the dividing
line between health and social care and if there really
is a dividing line. Do you have any thoughts on this?
In policy terms, what might we as politicians do to
address an issue that really is at the heart of the
problem we are talking about today?
Ms Longdon: I think we are probably not best placed
to answer that question from the evidence that we
have from the complaints that come to us, other than
perhaps to reinforce the point that actually the
complainants who come to us come to us very
confused about the whole issue: confused about
what health care is; confused about the terms that
are used; and confused about the distinctions that
many people as providers make but which of course
are meaningless to the users of those services. We
have a very large amount of evidence to demonstrate
that there is a real issue. In terms of solutions, I am
not sure we are well placed to suggest that. I am sure
there are others who are far better placed to suggest
how that might be addressed.
Q194 Chairman: You wrote to the Department
recently—and I think it was Mr Houghton who
signed the letter—with regard to continuing care
funding and registered nursing care contribution,
expressing concerns about the confusion between
these two areas and free nursing care, especially at
the higher band. I gather that you may have
received a reply to your letter. Is it possible for that
to be made available to the Committee? Or could
you indicate whether the concerns you have
expressed, which are quite strong concerns, have
been picked up in the reply from the Department?
Ms Longdon: You obviously will have an
opportunity to talk to the Department directly.
Q195 Chairman: Of course.
Ms Longdon: And I am sure they will want to
answer for themselves. But, yes, we have had a
reply, and the Department have said that they too
understand there is some ambiguity that they will
want to address as part of the new National
Framework. We are content with their statement
that it is actually diYcult to address the ambiguity,
and that it will take time to do that—although we
would hope it will be done as quickly as possible—
but that it is clear that people should be assessed
for continuing care funding first before they are
assessed for the RNCC band. Certainly, from the
complaints to us, that has not always happened, so,
in the meantime, while the clarification is going on,
the view the Department have expressed to us is
that they would expect a continuing care
assessment to take place before an RNCC
assessment has taken place, so that the individual
and the family can be clear that they do not qualify
for the full continuing care funding before they go
on to look at the RNCC.
Q196 Chairman: While I accept this is to some
extent a holding file, that the issues are being
looked at in more detail, do you get the impression
from what they have said to you that the
procedures to which you referred just now will in
fact take place? Are they taking action to direct
SHAs to ensure that action is taken along these
lines? Is there some directive that has gone out, do
we know?
Ms Longdon: In principle our understanding is that
there is. Colin may have some details.
Mr Houghton: I am very pleased with the reply
actually. It is very positive. It agrees with us on the
nature and the manner in which these two streams
of funding came about. They agree there is
confusion and diYculties interpreting these. We are
hoping to meet with my counterparts in the
Department of Health next week, as soon as
possible, to try to address this. We recognise that
there is the forward look for the National
Framework, but obviously our concern with the
Ombudsman at the moment is that we have a lot
of complaints at the moment solely about this issue
of having higher band. People are saying, “Look,
they should have continuing care. What is the
diVerence?” I am looking forward to meeting very
soon to try to work on this and to address this
issue, and to see how we go about ensuring that,
as I understand it, the 15,000 to 20,000 higher band
cases have been looked at properly: continuing care
first and then, if they are not eligible for continuing
care, moving on to the RNCC bands.
Q197 Chairman: In your letter there was reference
to the RNCC being more restrictive within
National Health Service continuing care. Has there
been a response from the Department on that
particular point? Or is that something you are
going to discuss with them?
Mr Houghton: I think that is something we are
going to be discussing.
Q198 Mr Burns: I think I am right in saying that
the problems which led to you receiving complaints
started from 1996. Do you have a breakdown of
the number of complaints you have had for, say
1996/7, and 1997/8, and 1998/9? Is there any way
of finding out when the most critical time was for
the most complaints?
Ms Longdon: No, we do not have that information.
In fact, the issues that we looked at were looking
backwards. Most of our complaints have come in
since the Ombudsman issued her report in
February 2003 drawing attention to this issue.
Before that, we did not have large numbers of
complaints coming in, so we were not in a position
to identify the volume. I think everybody was
surprised by the volume of people who were
aVected.
Q199 Mr Burns: When the Ombudsman’s report
drew attention to a wider audience that there was
a problem, presumably a lot of families would have
thought, “Ah, that must have been a problem we
suVered from in . . .”—whenever it was. When they
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started complaining, you would know about which
time period they were talking, because they would
say, “Mother went into a home in 1996”—or 1997
or whenever. Would you not have the statistics as
to when the problems were occurring?
Ms Longdon: When we got the really large number
of complaints which have come to us since that
report—normally we do not have large numbers of
complaints and we have received over 4,000
complaints since then—in the first instance,
because of the Department’s response to the
Ombudsman’s report—which was to say that there
would be a retrospective review of those cases—we
passed the complaints we received to the Strategic
Health Authorities and said, “You have
undertaken to review these properly.” Therefore we
did not retain that information; we sent it to them.
That information is something you would probably
need to look somewhere else for, I am afraid.
Q200 Chairman: Do you also have any thoughts on
geographical location: where it is that you have
received substantial complaints from? One of the
issues we talked about last week was that some
people seemed to be more aware of the issue by
various mechanisms. Easington Working Men’s
Club seemed to be one organisation that appeared
to assist people in that part of the world. The word
got round. A serious point. Can you identify
particular pockets of problems in certain parts of
the country from the information you have?
Ms Longdon: The information we have is partial.
It is dependent upon a complaint being made to us,
therefore we would not tend to have the whole
picture. But we are dealing with complaints by
Strategic Health Authorities in batches. We have
some information about where we have the most
complaints and where we are taking those forward.
I am not sure that we would be able to say there is
a causal link between that and local publicity. The
causal link might be between that and how satisfied
people have been with the process that they are
being put through. We can provide information. If
you want it, we could get it to you subsequently by
SHA for the number of complaints we have
received.
Q201 Chairman: If you do not mind, that would be
very helpful. The other issue that came up was that
perhaps more middleclass people are aware of this
than people who are less well informed. You
probably cannot draw any great conclusions from
the geographical information, but it would be
interesting to see it, so we would be grateful for
that.
Ms Longdon: Could I just add that in our report
we draw attention to the fact that anecdotally we
have some concerns about everybody who needed
to know having been captured by the publicity.
Anecdotally, we would support the concern, and
we are seeking an assurance from the Department
that they have done what they felt appropriate to
identify people.
Q202 Dr Taylor: Going on with the quality of the
assessments, because this is something that really
concerns us: last week we heard that the criteria
from Strategic Health Authorities may be largely
similar but that the interpretation of these at Trust
level is variable and really quite unsatisfactory.
That rather matches the statement in your review
to us, which is really quite damning, that: “In more
than half the cases my OYce examined we found
that the assessments had not been carried out
properly. The problems included poor quality
clinical input to both assessment and decisionmaking, inadequate documentation, failure to
consider changes in a patient’s health care needs
over time, and lack of involvement of, and poor
communication with, patients, carers and
relatives.” That is awful. That is a totally damning
statement of the way the process is going, and it
fits, again, with witnesses last week who said that
the system is just not working. What suggestions
do you have? You say the services should
be expanded—“expand local capacity”—and
obviously improve training. Can you help us to
know how that expansion should be done?
Ms Longdon: If I may start by saying that it is a
worrying picture. The report is there on the records
to address that. But some people are doing much
better than others and therefore there is much good
practice from which to learn. Our suggestions in the
report are two-fold: (i) that you have to have clear,
comprehensive criteria that everyone can
understand—that is, professionals and users of a
service—and (ii) that the tools that people are
provided with to help them to do this well—and
some people are doing it well—are shared very
publicly and clearly, so that we build on good
practice and get people following that good
practice.
Q203 Dr Taylor: I would love to know what you
understand by tools in this sort of circumstance.
Ms Longdon: I will hand you over to Colin for this.
Mr Houghton: These will be methods of assessing
someone’s health care needs against the criteria. I
know it is easier said than done, but, for example,
focusing on such diYcult words as: “intensity”
“complexity” and “unpredictability”—which are
there in many eligibility criteria, but where not a
lot of work has been done to try to pull those out
and examine them and see exactly what they could
mean for national criteria.
Q204 Dr Taylor: Should it just be a table, a chart
that people fill in?
Mr Houghton: No, more than a tick-box one. We
have had experience of quite sophisticated
assessment tools which, at the end of the day, fall
down to a scoring system, whereby you have to get
above a certain number in a certain number of
health care domains in order to qualify. I think it
probably needs a more holistic approach, to stand
back and look at it, and not to decide, “That one
qualifies and that one does not.” We do not have
all the answers to this. I think a lot of work needs
to be done on this. That is why we are so pleased
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that we are getting involved in looking forward to
the National Framework, so that we can contribute
to this.
Q205 Dr Taylor: So the aim with the National
Framework would be that there is a single national
assessment tool that everybody should use.
Mr Houghton: That is what we are proposing—
with appropriate guidelines.1
Q206 Dr Taylor: Going back to the quality of
assessment, in some places you say it is really being
done very well. Can you point to any group of staV
which is better at doing it, which it is essential
should be involved? Are there any lessons from the
places where it is done well that we ought to
know about?
Ms Longdon: The start is that this is a
multidisciplinary assessment, and therefore you
have to make sure you have involved in the
assessment the people you need to have involved in
that assessment. For us that is a decision that is not
always taken at the outset, so an assessment might
be made by an individual from one specialism
rather than making sure that it is multidisciplinary
and reflects the needs of the individual. Therefore,
I think an important start-point is to make sure you
have involved in the assessment the people you
need to have involved in that assessment.
Q207 Dr Taylor: The areas from which the
complaints came, was it fairly obvious they did not
have the right representation on multidisciplinary
teams? Or is that a simplification?
Mr Houghton: In some cases it became obvious
from looking at the nursing notes or the care home
notes, that there were, for example, regularly
occurring psychological needs. With the best will in
the world, a single nurse looking alone at these may
not be able to pick these up or may not see the
significance of them when seen in a pattern of
behaviour.
Q208 Dr Taylor: Are the members of a
multidisciplinary team laid down anywhere, as to
who should be on it? Or is it left to the trust PCTs?
Ms Longdon: The diYculty in that is that who
should be there is so dependent on the needs of the
individual. Individuals with a variety of needs are
being assessed under these criteria, and therefore it
is a matter of judgment, clinical judgment in many
cases, about who should be represented in any
individual assessment. It is not possible to say,
“The answer must be X.” People do have to
exercise judgment and be flexible and tailor that to
the individuals concerned.
Q209 Dr Taylor: Would absolutely clear criteria
reduce the need for training? Or is the need for
training still absolutely paramount?
1
Note by witness: There should be a single set of assessment
tools, as set out in the Ombudsman’s retrospective report
on continuing care.
Ms Longdon: There are a number of areas of
training to which we have drawn attention in our
report. One is, overall, the fact that this is an area
in which there was not a lot of knowledge and
expertise. Indeed, the work that has gone on over
the last few years has developed that hugely, but
there is a lack of real understanding of these issues
at many local levels. So there is a general issue of
capacity; there is a specific issue around certain of
the elements of the assessment that need to be
undertaken; and then there are other general issues,
for example around communication, which are
very relevant to the way people understand what is
going on.
Q210 Dr Taylor: Finally—and I do not really
understand this—how does the single assessment
process fit with your idea of a national
assessment tool?
Mr Houghton: I think if the tool was to form part
of the single assessment process—which, as I
understand it is not universal across all trusts, all
Strategic Health Authorities, at the moment—then
I think that single assessment process, with the
appropriate tool as part of it, would be a help.2
Q211 Dr Taylor: So it is part of it.
Mr Houghton: Yes.
Q212 Mr Bradley: In terms of the multidisciplinary
team where there is good practice, is it clear who
is responsible for pulling that team or those
individuals together? Are there diVerent people in
diVerent trusts responsible for taking the lead on
determining who should be involved in that
wider review?
Mr Houghton: It varies, I am afraid, between the
trusts. In some cases, certainly where there is an
appeal tier with a Strategic Health Authority, there
is a clear lead given and a clear person who brings
it all together. In other cases, there is not a second
tier at all and it goes straight into the complaints
procedure. So it does vary a lot. Certainly, as part
of the National Framework, we can contribute the
areas where we see that it appears to work very
well, and I think we could pull something out of
that.
Q213 Mr Bradley: Do you have a view of who
should take that critical lead?
Ms Longdon: That is a matter to which we would
certainly want to contribute, but I am not sure we
are saying that we think we have the answer as to
that way forward.
Q214 Chairman: One of the issues, following on
from what Keith said, came out last week. We were
talking about demarcation between health and
social care and health and social care professionals,
and it was apparent from the evidence of Ms Kath
Atlee, who I believe works in Hounslow PCT, that
in their area they have joint commissioning
2
Note by witness: The Ombudsman’s report recommends a
set of assessment tools, not just a single assessment tool.
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arrangements, so that is working multiprofessionally in a collective way. But that was not
the case in other parts of the country from which
we sought evidence, including my own part of
Yorkshire. Do you have any thoughts, in looking
at the feedback you get from complainants, as to
whether the way in which people operate
professionally at local level has a bearing on the
outcomes that might be presented to you? Would
this joint commissioning model perhaps assist in
addressing some of the problems that you face in
other parts of the country?
Ms Longdon: I do not think we have the evidence
to back up a view on that. We have some examples
but I do not think we have a considered view about
joint working.
Mr Houghton: Where there are examples of that
joint working and it has been set out clearly to the
carers and relatives: these are the people who are
going to make the decisions, this is the process—
and, even more, when they are invited to be part
of the process—then we get less complaints from
those people because everything is set out. A lot of
the complaints we get are (a) “We think it is a
wrong decision” and (b) “We do not understand
the system.”
Q215 Chairman: So you do feel that the way people
operate locally has a bearing. It may not necessarily
be in terms of joint commissioning, but including
users’ families in the process is helpful.
Mr Houghton: Yes.
Ms Longdon: Absolutely. We are very clear that
including the families/the carers is very helpful and
would certainly represent good practice.
Q216 Dr Naysmith: To probe a little further, what
you are saying is that you know of examples of
good practice, they are probably diVerent in
diVerent places, but you do not want to recommend
any particular one until the whole thing has been
examined a bit more closely. Is that really what you
are saying? You want to look at these places where
there is good practice and see what you can draw
out of that to recommend more widely.
Ms Longdon: Certainly. That is because we are well
aware that our knowledge depends on people
having complained in that area. There will be some
areas that we do not know about and they may
have wonderful practices that we do not know
about, so our view is that we would want to
contribute what we know in order to inform a
better way of doing things but we do not pretend
that we have all those answers or all the
information.
Mr Houghton: One of the things we did when
looking at this whole area was to take a reality
check and make sure that we are not setting some
gold standard for these assessments that no-one can
achieve. But we have seen excellent examples
throughout the country of the way assessments
have been carried out, so we know that it can be
done. I would like to go on record as saying of all
the Strategic Health Authorities that they all have
good points that we can pull out, and, although in
our report we put down lots of examples of not so
good practice, none of those are all concentrated in
one Strategic Health Authority. There are pockets
and areas in all of them where there is practice that
we think is great, and if we can replicate that and
bring that together then I think there is good hope
for the future.
Q217 Mr Amess: Primary Care Trusts could not
have greater powers and bigger responsibilities, as
they appear to have at the moment, and there could
not be any greater challenge for them than deciding
who exactly would be eligible for NHS continuing
care. Your good organisation has made proposals
about these panels and what they should be
composed of and how perhaps their decisions be
challenged. Could you elaborate a little bit on what
your proposals are actually trying to achieve.
Ms Longdon: We are interested in good
administration of a clear framework, which
actually delivers across the country the right answer
for the individuals that are going through this
process, in a way that takes account of their
diVerences—because people who are seeking this
support are very diVerent—but in a way that also
ensures that people are treated consistently across
the country.
Q218 Mr Amess: What are you proposing?
Ms Longdon: We are proposing that there should
be a National Framework, a single set of criteria
that are applied across the country which needs to
be developed. We will contribute to that
development, but that is clearly something that is
a matter of policy for the Department of Health to
lead on. Within that, there should be examples of
how you can undertake this process well in your
local context. We also want to work with others,
in sharing our knowledge of what works with
others, in order to come up with examples of what
works so that people can use that. Those are the
two key changes we are proposing. Within that we
are saying there must be more training, there must
be better documentation, and there does need to be
some clear monitoring of what is going on so that
everybody is clear as to what is working and what
is not.
Q219 Mr Amess: Who do you specifically think
should sit on these panels? Who should appoint
them? What should their backgrounds be?
Ms Longdon: What we can do is to share some of
the details that we have of good practice. We could
let you have those subsequently, as examples of
where we can see things working in detail—not
saying that it should be the way, but that this is a
way that we have seen working as good practice to
contribute to your deliberations. Would that be a
helpful way forward?
Chairman: Thank you.
Q220 Mr Amess: What do you see as the role and
remit of these review panels?
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Ms Longdon: I am sorry?
Q221 Mr Amess: You are not being terribly
specific, if you do not mind me saying. I asked the
question: Where are these people going to come
from? Who is going to appoint them? What is their
background? What are they going to achieve? I
understand what you are saying, and I am not
wishing to be rude but that is not exactly what I
asked you.
Ms Longdon: I think the question you are asking
us is probably not one that as the Ombudsman’s
OYce we are in a position to answer.
Q222 Mr Amess: Okay.
Ms Longdon: Because we have a view which we
want to share but we do not claim to have the
overall picture or the position to make that level of
detailed recommendation at this point.
Q223 Mr Amess: But you obviously want to get it
right otherwise you are going to be flooded with so
many problems.
Ms Longdon: Absolutely. And therefore we are
really keen to be part of this, and to add the
information that we can and the help that we can
about good practice—and just the sort of thing we
were talking about which you can take from other
areas. It is not just about what is a review panel,
but we feel it is something we will contribute to
rather than something we want dogmatically to
say, “This is the answer.”
Mr Houghton: One of the problems with the
Ombudsman’s OYce is that we only deal with
complaints. When people are happy and there has
been a good decision and they are happy with it,
we do not see it. Even in some cases where we say,
“We don’t think this is right. Can you do a
reassessment?” they do not then necessarily—
although a few people do—come back to us and
say, “Great, it was done. Excellent. I am happy
now.” So we do have slightly one point of view.
Mr Amess: Thank you.
Q224 Dr Naysmith: Could we look a little bit at the
retrospective review of the funding decisions. We
touched on it a little bit earlier, but could we
explore it a little bit more deeply now. In your
written evidence you describe: “flaws, often
systemic, in the way retrospective reviews were
carried out.” Could you elaborate on that, with
some examples of the flaws that you found in the
way the process is carried out?
Mr Houghton: We have set some of these out in
the follow-up report. By systemic we mean that in
certain trusts or in certain Strategic Health
Authorities they have a process. Where we see that
part of that process raises concerns with us, that
has been replicated on every individual case. That is
what we call our concerns about the systemic flaws.
Examples are only looking at one particular
timeframe, so that, if a relative has been in a care
home from 1998 to 2000, they will do an assessment
based on the last six months. As you know,
people’s health care needs can vary, they can go up
and they can go down. Also, where people have
psychological needs—I saw that you had Barbara
Pointin here last week—sometimes psychological
needs are not taken into account. Other examples
are where, for example, someone will go into a
nursing home, look at all the nursing home notes,
prepare a summary of their view of what that
health care portrayal presents, and then present
that to the decision panel. The decision panel will
only have that summary and not the full notes, so
someone is already interpreting something before it
ever gets to the panel. Those are some examples.
Q225 Dr Naysmith: It sounds a bit to me like the
Benefit Agency medical assessments sometimes for
benefit. If you do not get the full information the
first time and people get turned down, then, when
you have an appeal with all the evidence there,
people are given the money. Is it a bit like that?
Mr Houghton: I think it may be. I am not sure. I
observed a panel in operation last year, when I
was particularly impressed. The health care
professionals engaged in a full discussion. There
was not any acceptance of, “That’s what the nurse
says. Let’s look at the criteria. That is a take into
account,” there was a full discussion about, “What
does this mean? Let’s look at the raw material.” I
have to say it is quite time-consuming, but the good
thing is that that was recorded and the decision that
was finally sent to the relative in that particular
case—which was not to get full funding—was
completely set out. There was no doubt as to how
the decision had been reached, what evidence had
been used to come to that decision. I thought that
was an example of good practice.
Q226 Dr Naysmith: You said a minute or two ago
there were some examples of bad practice, where
you kept getting complaints from one or two
particular authorities. Is there any evidence that
they changed their tack when you sorted out these
problems?
Mr Houghton: Absolutely. My team have been
visiting. We hope to visit all Strategic Health
Authorities and we have visited 10 at the moment.
In almost every case, we have met them, talked to
them about our concerns, and a really useful
discussion has entailed. In almost every case, at the
end of that discussion they have understood where
we are coming from; we have understood some of
the problems that they have had; we have agreed
what was a good practice and what was a practice
that possibly ought to be amended. Today, I have
heard a couple of Strategic Health Authorities have
agreed to take back for re-assessment the
complaints that have been made to us, taken on
board our concerns about the systemic flaws and
are going to re-look at those.
Q227 Dr Naysmith: Did they re-look at any of the
ones they did about the same time where they have
not had complaints? Or was it just the complaints
you drew to their attention?
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Mr Houghton: I think that is phase two. We are
getting them to look at our complaints first of all,
to get them in the habit of doing these assessments
properly, and then we will be looking at going back
over previous cases.
Q228 Dr Naysmith: A little bit earlier we were
talking about how not every illness is covered by
Strategic Health Authorities, and it tended to be
those who are more articulate and so on who knew
about the process. What should the Department do
to ensure this does not happen, that retrospective
reviews are available to everyone who should be
having one?
Ms Longdon: Again, I am not sure we are very well
placed to give you advice on that. We have seen
some examples. Some people have come and told
us what they were doing, and that was interesting.
We would suggest that more weight should be given
to those PCTs and those SHAs who are working
hard to publicise what is going on. Certainly, I do
not think we have a simple answer which is: “We
suggest X, Y or Z should happen.”
Dr Naysmith: Would it be too burdensome to
recommend that every review should be looked at
again, to see whether there was a possibility that it
might have gone wrong? I do not mean in detail,
but look at everyone assessed over a particular
period and decide that there might be something
here to look at.
Q229 Chairman: Do you want to go away and
think about that?
Ms Longdon: I think so. Thank you, yes.
Q230 Dr Naysmith: You state that, when giving
redress to people wrongly denied continued care
funding, the guiding principle should be that the
individual gets proper restitution or their estate
“should be put back in the position that they would
have been in had the maladministration not
occurred.” Could you give us some examples of
what you mean by that, and, of the cases you have
received, which you are taking forward now with
the Department that fall into this category.
Ms Longdon: The statement we make is a general
statement that the Ombudsman makes about all the
complaints that have come to her that people, as
far as possible, should be put back in the position
they would have been in. We are looking at some
specific complaints that have come to us from
individuals claiming that they have not been put
back in the place they would have been, suggesting
to us—
Q231 Dr Naysmith: What are the sorts of things?
Ms Longdon: Suggesting to us that they can
demonstrate a link between actions that they took
which have had implications for them. The sorts of
examples we are looking at—and on which we have
not made any decisions yet—are, for example, an
individual who said they sold a house as a result of
having to fund the care themselves; and an
individual who said that actually she gave up her
work in order to care for an individual herself.
Those are the sorts of issues that have been raised
with us at which we are presently looking to see
what the answer would be. We have told the
Department about the cases and issued a statement
of complaint, and we are investigating the issue of
the sale of the house at the moment.
Q232 Dr Naysmith: That is, that giving up
employment and giving up a house are two
examples.
Ms Longdon: They are two particular examples.
Another issue is the rate of interest that people have
received on the payments that they should have had
and did not receive. That is quite a large one for
us. It is another issue we are looking at.
Mr Houghton: People may have a view that the
only complaints we get are people saying, “I should
have got full funding and I did not,” but there is
a whole range of complaints about delay, the way
they were treated before panels. We do have a
number of specific complaints about, “Okay, I have
finally got continuing care”—or the estate has got
it—“but all I have got is retail price index and that
is not enough. I want you to get me more.” That
is something we are taking forward with the
Department strategically because probably there is
an issue there in that we cannot look at an
individual case.
Q233 Dr Naysmith: What proportion of the time
of your unit is spent on looking at these things?
Mr Houghton: It is not large.
Q234 Dr Naysmith: It could be quite complicated,
and involve getting evidence going back quite a
long time.
Ms Longdon: It is.
Q235 Dr Naysmith: It is not just a question of
wrong assessments, but looking at other things as
well.
Ms Longdon: On the first point, in terms of the
amount of work, complaints come to us in sort of
waves, so that we are now hearing from people
whom people accept did not get the full funding,
and they are now coming to us to talk about what
happened when they were finally awarded it. So
these are complaints that have come in much more
recently than some of the others. In terms of our
workload—
Mr Houghton: It is not great at the moment, but I
am just not sure how many assessments are still
going through the process out there, going through
the appeals, local resolution, that will eventually
come through to us.
Q236 Dr Naysmith: What has happened since April
2004, since the Health Care Commission took over
responsibility for this? Has it changed anything?
Ms Longdon: We have an agreement with the
Healthcare Commission about complaints about
retrospective reviews. That is something that we
have agreed with the Department of Health, with
the health bodies concerned and with the
Healthcare Commission. That is, that, given that
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the people who are complaining about particular
retrospective reviews have already been through a
very lengthy complaints process and have then had
their complaints referred back, but there was not
the local capacity to review that and the Healthcare
Commission have not had an opportunity to build
up the expertise in this particular area, therefore the
Ombudsman agreed to exercise her discretion, with
the agreement of everybody and very specifically
with the agreement of the complainant, to entertain
the retrospective review complaints directly rather
than to go through the Healthcare Commission,
and the Healthcare Commission have agreed with
us that any complaints they get about retrospective
reviews they will pass directly to us.
Q237 Dr Naysmith: When will that arrangement
end? Is it open-ended at the moment?
Ms Longdon: No, it is not. It is to do with the
retrospective agreements. We are clear that under
the NHS complaints process, on which we issued a
report very recently, complaints should go to the
Health Care Commission before they come to us.
Those that are about funding, after April 2004,
under the new arrangements, will actually be dealt
with by the Health Care Commission. We have
oVered with the Health Care Commission—we
have a lot of contact with the Health Care
Commission—that we will share expertise with
them, so that we can help them up the learning
curve in this area, so that they are enabled to
consider those complaints.
Q238 Dr Naysmith: Is the Department of Health
not a little bit unusual in not oVering compensation
for maladministration?
Ms Longdon: I think it is fair to say that the
Department have oVered compensation for the
admitted fault in the retrospective reviews and they
have made restitution in terms of the funding. We
are saying: Is this all of it? So I think the principle
is established that the Department have accepted
that they needed to do something, and, indeed, they
have paid out. I am sure they will tell you how
much money they have paid out as a result.
Q239 Dr Naysmith: That is not quite the same thing
as maladministration, is it? Sometimes from some
departments we get a sort of compensation
payment for—
Ms Longdon: I am sorry, I misunderstood.
Q240 Dr Naysmith: That is what I am really
asking about.
Ms Longdon: We have the issue of what we would
call “botheration payments”—payments which are
about inconvenience or distress and worry—and we
will ask for such payments where we consider for
any complaint, on our parliamentary work and our
health work, that people have been put through
that. There is nothing to prevent the Department of
Health making such payments and for local health
bodies to make such payments, and, indeed, they
do in a number of areas. We have examples where
we have suggested that should happen and it has
happened. Obviously, in cases where there are such
a large number of complainants, as there are here,
it becomes a broader issue. But those payments
have been made, we have examples of those, and
we think they are very appropriate. So they have
taken place in particular examples.
Q241 Dr Naysmith: In this area that we are talking
about this morning.
Ms Longdon: We know of one in this area. But in
other areas too we know of them.
Q242 Mr Burns: You will be aware over the last
few years how many people have been grateful to
the work of the Parliamentary Ombudsman,
particularly with their original report and the
follow-up report. Throughout the history of the
Parliamentary Ombudsman, have there been many
incidents where the Ombudsman has produced a
report and found something going wrong and made
recommendations, and you have had to then
produce a follow-up report?
Ms Longdon: I am afraid I cannot comment on the
history. I do not know of that.
Q243 Mr Burns: How long have you worked there?
Ms Longdon: Two years.
Mr
Houghton:
Seven
years,
including
parliamentary. You mentioned parliamentary, do
you mean parliamentary and health together or
either?
Q244 Mr Burns: Would you agree with me that it
is, from your suspicion, very unusual for the
Parliamentary Ombudsman to produce a followup report?
Ms Longdon: Yes.
Q245 Mr Burns: Would you also agree with me that
when you produced your follow-up report it was
fairly damning and rather surprising at the response
in reality to the original report, in that you found
that over half of the cases that have been reviewed
were incorrect in some way; that there was
considerable concern at the delays in sorting out this
problem and providing justice for those who had
suVered an injustice; and that it seemed that either
this was happening because people just had no clue
of what they were doing or there was a suspicion
that, the longer it took, because of the length of time
and human nature, there would be possibly less
complaints or others that would be abandoned
because the people were no longer alive, frankly, to
contribute to the process. Which one do you think it
is, or a combination of both?
Ms Longdon: Certainly we are clear that what went
wrong was a huge disservice to a large number of
individuals and we have drawn attention to that. As
you say, there was a lot of delay, there was a failure
to communicate, decisions were wrongly made, and
these are often frail, vulnerable people who are in the
situation. We are very clear that in making this
report to Parliament we were saying, “This is an
issue that needs to be looked at and we need to get
this right.” In terms of the motivation of the people
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who were operating the service, I am not sure we are
in a position to comment on that motivation. Our
sense was that there were a lot of people, locally,
working incredibly hard to try to make this system
work in dealing with people—and perhaps getting it
wrong, but not getting it wrong because they were
deliberately trying to get it wrong but because they
did not have the framework or the capacity and the
competence with which to do it. I do not think we
have any information to suggest that people were
deliberately delaying things in order to achieve some
other outcome, but the eVect was that those delays
were very significant and quite unacceptable.
Mr Houghton: If I could endorse that. Between the
period of the first report and the second report, the
February 2003 and the December 2004 reports, not
only did we have the complaints coming through, we
had a great number of practitioners from trusts and
Strategic Health Authorities telephoning us almost
on a weekly basis to say, “We are struggling with this
criteria. We are trying to do our best. Can you come
down and train us? Can you tell us what to do? Or,
better still, can you come and sit on the panel and do
this with us?” Of course, we had to keep our distance
from that. I think there were considerable eVorts to
try to get this right, but they did not have the
guidance or leadership at that time to get it right.
Q246 Mr Burns: You may well be right from your
experience. The only experience I have is one
constituency case and, I must say, the performance
of Essex Strategic Health Authority in carrying out
the review in no way near reflects your experience. It
was only through the PCT constantly badgering
them and writing to the Chairman that eventually
one got it given to. Do you also find it surprising,
given the pressure—because there is considerable
pressure from a variety of sources to resolve this and
to right an injustice—that the minister responsible
for sorting this out at government level eight times
gave commitments that deadlines would be met in
carrying out the backlog, including three in
Parliament, and eight times those deadlines were
missed and the commitments failed to be realised, to
the point where he actually came before this
Committee last summer to say that he was
embarrassed by the situation? Do you find that
surprising?
Ms Longdon: Certainly—and we are on record as
saying this—we were concerned that we were misled
as to the timeliness of reviews—and, indeed, we then
asked complainants to rely on those commitments
that were given. So we share your concern that
commitments were given and we therefore then said
to a complainant, “You should go back to your SHA
and it will all be completed by . . .”—December/
April/July—and therefore we are very, very
concerned that we had assurances on which we relied
which aVected people. We certainly share that
concern.
Q247 Mr Burns: That is quite a strong word
“misled”. For the Parliamentary Ombudsman’s
OYce to be misled is quite a strong condemnation.
Who do you think misled you?
Ms Longdon: We were assured—
Q248 Mr Burns: By?
Ms Longdon: By the Department of Health.
Q249 Mr Burns: Are we talking about civil servants,
ministers, both?
Ms Longdon: I think I would want to check exactly
where those assurances came from before I answer
that. I would not want to mislead you on that.3
Q250 Mr Burns: You are suggesting, so that I am
completely clear in my mind, that it was either civil
servants in the Department of Health or ministers
who misled you about those commitments.
Ms Longdon: They gave us an assurance that a
timescale would be met on which we relied and
which we passed on to complainants. That
subsequently was not the case.
Q251 Mr Burns: Presumably when those deadlines
were not met and you felt you had been misled, you
were aggrieved because you possibly felt
embarrassed or you had let down people by your—
Ms Longdon: We had let down complainants.
Q252 Mr Burns: What did you do? Did you go back
to the Department of Health to say, “Why have we
been misled?”
Ms Longdon: We certainly raised it with the
Department of Health, yes.
Q253 Mr Burns: Again, was it at ministerial level or
civil servant level? Or will you check that?
Ms Longdon: In each case, we will check.
Q254 Mr Burns: What was the response?
Ms Longdon: The response, I think as you know,
was that a new deadline was set and we were given
access to that new deadline. We were told, “The
deadline is now . . .”—whatever it is—and then we
relied on that deadline in terms of the decisions that
we then took.
Q255 Mr Burns: When that deadline was not met,
presumably you felt misled again.
Ms Longdon: We wrote a report, which is a matter of
record, which says that we were concerned that the
deadlines which we had been given and which the
public had been given had not been met.
Q256 Mr Burns: Do you find it extraordinary, given
the history of this saga, that you had to write that
report?
Ms Longdon: I think our term would be: we find it
“regrettable” that we had to write this report.
3
Note by witness: To clarify this point I quote from our
Follow-up Report to Parliament “ We passed on to the
Department of Health concerns that we had heard from the
NHS bodies about diYculties in meeting both the December
and March deadlines. However, on both occasions the
Department assured us that their information showed the
targets would be met and we passed on these assurances to
compliments, their representatives and Member of
Parliament. It became evident that the Department’s
information was unreliable.”
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17 March 2005 Ms Trish Longdon and Mr Colin Houghton
Q257 Mr Burns: Presumably that is diplomatic for
disappointed.
Ms Longdon: We are disappointed. And it is
regrettable because there are people who are
suVering during this process. There are individuals
there for whom this is terribly diYcult.
Q258 Mr Burns: We have a problem here in
Parliament now, because up until 16 or 18
September last year we could table parliamentary
questions and by individual Strategic Health
Authorities we could get the information and track
what had happened and what was happening to
those complaints. Just before Christmas the
Parliamentary Under Secretary blocked my
questions seeking for further information on that.
The Secretary of State very kindly agreed to supply
it when he came before the Health Select Committee
in early January, but, when the question was retabled, it did not actually get answered in the same
format as the published charts in September by the
Parliamentary Under Secretary, it just said that all
but two Strategic Health Authorities had completed
their cases. So, basically, we are being blocked. Are
you being blocked, or do you know the answer to the
question in a way that we cannot get that answer?
Ms Longdon: Let me explain. We have said publicly
in our report that we believe monitoring of the
situation is important and there should be
accountability around this issue. How that is
achieved is not what we have said. We have said that
should be achieved. We would agree that there
should be public information available around that.
Do we have that information? I am not sure we do.
Mr Houghton: No.
Ms Longdon: No.
Q259 Mr Burns: You do not have that information
either.
Ms Longdon: Nor have we asked for that
information specifically in the form that you are
suggesting.
Q260 Mr Burns: Do you find it odd that Parliament
cannot get that information in the original way in
which the Government published it last September?
Ms Longdon: Do we find it odd? I think we are
saying that there should be information available.
The form of that information is something you will
clearly pursue. I think it is a matter of discussion
about that.
Q261 Mr Burns: The trouble is we cannot pursue it,
because Parliament cannot get the information. I
know the minister is coming here shortly. Maybe we
will be able to press him further.
Mr Houghton: The two areas of information that we
would like and on which have been unable to get
clarification are these. The Department have said
that 20% of all the retrospective review cases have
resulted in restitution, but restitution could be the
whole of the six-year period or for the last two
months of people’s lives. I think it would be useful to
decide whether it was for the whole period or for a
shorter part. The other point it would be useful to
know is: When do they consider a retrospective
review case has been completed? Is it when the first
decision is made to the relative to say that is the
decision? Because it is then an ongoing case from
there, through the various appeal mechanisms—and
for our own planning purposes really it would be
good to know how many other cases are out there
that are likely to come on to our doorstep.
Q262 Chairman: Having listened carefully to the
answers you have given, one of the issues that came
out very strongly in the evidence session last week
was over problems that have arisen in retrospective
reviews over inadequate or completely absent
documentation—which has caused immense
problems. Is it reasonable to have expected the
Government to have understood the diYculties that
would occur with their lack of documentary
evidence? Do you feel that level of knowledge should
have been there in the Department of Health at the
time you are looking at the arrangements for
reviewing these decisions?
Ms Longdon: We have said that everyone was
surprised by the scale of the problem. We certainly
were and therefore I think it would be diYcult to say
that the Department should have known. I think the
scale of the issue is larger than anyone expected in
February 2003. In terms of documentation, I think
we have been quite surprised by some of the
documentation or the huge absence of
documentation and the diYculty of getting it. One of
our suggestions is that for the future there should be
some clear standards of documentation set out, both
for the care records of the individuals and, I have to
say, in terms of the records of the process of review
itself, because there are deficiencies in both those
areas. We have talked about a number of individual
issues, where families have gone to huge lengths to
try to track information that people have initially
been told was not available but which subsequently
has been found to be available. So I think there is an
issue over tenacity and where you draw the line in
trying to find records which, by their nature, have
proved very diYcult to secure.
Mr Houghton: I agree with that. In one particular
case, there were diYculties because the care home
would not release the papers unless someone was
going to pay for the photocopying. In the end, we
stepped in and got the copies ourselves and provided
them to the panel.
Q263 Mr Burns: Do you already have the
information as to what was said to these people, in
terms of the cases you are dealing with, who are
dead?
Ms Longdon: No.
Q264 Mr Burns: Do you think it is many?
Ms Longdon: I do not think we have the evidence to
give you that information. Of course, this has been
going on rather a long time now and, therefore, in
the circumstances of a complaint, the patient may be
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alive at the beginning and not be alive at the end.
Certainly we have had complaints from estates of
individuals as well as from individuals who are alive.
Chairman: Are there any further questions? Could I
thank you both for a very helpful session. You have
indicated your willingness to come back to us with
material arising from the session. We have picked up
a rumour there might be an election in the oYng. We
are hoping to be able to produce something pretty
quickly on this subject, so we would appreciate as
quick a response as you can possibly give us. We are
most grateful to you both for your help. Thank you.
Memorandum by the Department of Health (CC 9)
NHS CONTINUING CARE
Introduction
1. The Government welcomes the opportunity provided by the Select Committee Inquiry to set out the
range of policy initiatives that form the National Approach to continuing care, and to comment on the
progress made in reviewing past funding decisions.
2. Considerable progress has been made in the development of continuing care since the early 1990s. In
1995 the Department issued guidance requiring health authorities to develop eligibility for continuing care.
Following the Coughlan judgement, a legal case from 1999, which provided some clarification of the
responsibilities of the NHS and social services for long term care, the Department issued further guidance
in 1999, and again in 2001. The former required Strategic Health Authorities (SHAs) to ensure that their
criteria were Coughlan compliant, and the latter provided further consolidation. Following shortcomings
raised by the Health Service Ombudsman’s report in 2003, the Department responded to her
recommendations including providing appropriate recompense for those who were wrongly made to pay
for the cost of their care. Following the amalgamation of the numerous former health authority criteria, to
the 28 legally compliant SHA criteria it is now an opportune time to revisit the area and to improve practice
and understanding. The Department would like to remind the Committee that three written ministerial
statements have been made on the subject of continuing care in June, September and December of 2004.
How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities
in Reviewing Criteria for NHS Continuing Care and Developing Policies
3. The Department acknowledges the work already carried out by the SHAs in bringing together past
criteria from over 95 sets into 28 sets of legally compliant eligibility criteria. In addition, the independent
report on SHAs’ work on reviewing criteria and retrospective case reviews made clear how this has raised
awareness and knowledge of the issues within the NHS. It is important that the momentum and progress
are not lost.
4. The Department is working with the SHAs and other key stakeholders to establish the issues that the
National Framework for continuing care should address. Other key stakeholders involved in this process
are local authorities, voluntary organisations and the Ombudsman’s oYce.
5. One aspect of this framework will be developing a single national set of eligibility criteria. The SHAs
have direct experience of amalgamating these eligibility criteria, and as such we will be working closely with
them in order to learn from their past experiences, and from their best practice, to create a set of eligibility
criteria that will be used by all 28 SHAs.
6. The Department will issue guidance around the implementation and application of these criteria, and
will of course consult with all the key stakeholders and relevant bodies before its publication. This guidance
will be drawn up following close working with SHAs.
7. SHAs have also developed local protocols in many areas for conducting the continuing care assessment
process. The Department is setting up a website and discussion forum on continuing care which will facilitate
the dissemination of best practice. The Health and Social Care Change Agent Team are also amalgamating
current best practice protocols, and will be working with the Department and SHAs in order to issue best
practice guidelines around issues which will make the assessment process easier to understand and to
operate. This national framework of process and best practice will introduce a consistency of approach and
response.
8. The Department will also work with its stakeholders including SHAs to look at the current range of
assessment tools, and their role in the assessment process. Based on a consideration of all the benefits and
drawbacks of the use of tools, the Department will agree an approach with SHAs.
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9. The Department has met on several occasions with SHAs at a national level in order to work on the
National Framework. As a result of these meetings several workgroups have been set up covering areas such
as NHS funded nursing care bands, training and public awareness, assessment tools and process, panel
process, the integration of eligibility criteria, and interaction with local authorities. The national group have
met twice to date, and the first workgroup on eligibility criteria has also already met.
10. This work will continue to raise the profile of continuing care within the NHS and aims to improve
the public’s understanding of eligibility, and of the assessment process.
Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients
Wrongly Denied NHS Funding for their Long Term Care
11. Strategic health authorities have been required to investigate cases where individuals may have been
inappropriately denied fully funded NHS continuing care since 1996. Where investigations have revealed
that care should have been provided the NHS has been recompensing individuals for the cost of that care.
This process has formed part of the Department’s response to the Health Service Ombudsman’s report into
long term care, which was published in February 2003.
12. The review of past funding decisions has in many cases concerned individuals who are now deceased.
Where individuals are living the assessment has also meant that individuals future care needs (as well as
funding) have been addressed.
13. The number and complex nature of cases that arose, further complicated in many cases by the
diYculty of obtaining the relevant documentation for deceased patients, or care home records which date
back a considerable number of years, has meant that there was initially a backlog of cases.
14. The Department has been working with SHAs with a low rate of completion to ensure that they have
processes in place to complete cases swiftly and thoroughly.
15. The Department is only aware of one SHA where cases which were lodged before April 2004 have
not been completed, and dates for the completion of these cases have been scheduled with the families
concerned.
16. The NHS is committed to completing investigations as accurately and thoroughly as possible, and
is striving to meet the aim of completing new requests within two months of the receipt of all the relevant
documentation.
What Further Developments are Required to Support the Implementation of a National
Framework
17. Having developed the core of the framework, there needs to be a successful implementation of the
criteria, tools, guidance and guidelines. Attention will need to be focused on training, and a work group has
been set up to look at the issues of training and public awareness.
18. The Department is considering a range of options which will improve the application of the policy
at a local level, including developing and endorsing packages of training for front line assessors and
practitioners.
19. The Department is looking forward to the outcome of this inquiry, which will provide useful
information for this initiative.
Witnesses: Dr Stephen Ladyman, a Member of the House, Parliamentary Under-Secretary of State for
Community Care, Mrs Anne McDonald, Head of Delivery Programme, Older People and Disability
Division, and Mr Craig Muir, Deputy Director, Care Services Directorate, Department of Health, were
examined.
Q265 Chairman: Would you like to introduce
yourselves?
Dr Ladyman: I am Dr Stephen Ladyman,
Parliamentary Under-Secretary of State for
Community Care and my colleagues are Mrs Anne
McDonald and Mr Craig Muir who work most
closely with me on this issue.
Q266 Chairman: Thank you for your co-operation
with this inquiry and the evidence you have given
to us. We are most grateful. Perhaps I can begin
by talking about what I feel to be the core issue at
the centre of some of the problems we have picked
up in evidence. I am sure you have noted some of
the evidence we have had, and we have just heard
from the Ombudsman about the information that
they have picked up as a result of complaints. If I
were to refer to a key feature of numerous inquiries
that this Committee has conducted during my
nearly eight years as chair, the whole debate around
the margins of health and social care perhaps will
come out as the most important issue that has
never been resolved. You, as a minister, are landed
with a problem that has not been addressed by
successive governments in my personal view—and
colleagues round the table might diVer on this. Do
you feel that we are at a stage where over and above
the continuing care issue we need to be looking
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much more radically at how we address the
problems around that divide. I am not sure how
much money has been spent on this Committee in
looking at the issues of health and social care and
the problems arising around the margins, but I
meet numerous oYcials all over the country whose
entire work relates to arguing with somebody the
other side of the fence—health or social care—
about who is responsible for a particular
individual’s care. It struck me on many occasions
that we must spend millions and millions of pounds
employing suits on each side of the fence to argue
with each other, when that money could go on
funding care. We may even save money by moving
in that direction. Do you have any thoughts on
that?
Dr Ladyman: Let me deal with the principle and
then the practicality. What you are saying in
principle is absolutely right. There are many
disputes that arise because of it. If we just go back,
for example, which is most often quoted in relation
to NHS continuing care, the Coughlan judgment,
that is quite often misinterpreted. The Coughlan
judgment said that there is a maximum level at
which a council which has a responsibility to
provide funding for social care can be expected to
provide that funding, and beyond that it is ultra
vires. The Coughlan judgment did not make
comments about NHS continuing care; it simply
said: “Here is the most that a council’s remit allows
it to pay.” In making that judgment, they
acknowledged what you are saying; that this grey
area between the two is a real problem. The
question we then have to grapple with is the best
way of resolving that. I know that you personally
have always advocated health and social care
coming back together again, which is more or less
the situation in Northern Ireland. I have to say that
from my discussions with people in Northern
Ireland, even there, where the two things are put
together, the situation is often just as diYcult to
deal with. Some people will tell me, “oh, yes, it
works wonderfully”, and some people will tell me,
“no, it is chaotic”. In the end it comes down to how
closely social care and health professionals are
working together; how well they understand each
other’s needs and are discussing these issues and are
making sure they understand where funding of
particular types of care should come, and the
structure does not much matters. If professionals
have that sort of relationship and understanding,
then it works well; if they do not, then irrespective
of the structure, it works badly. When you see the
Green Paper Adult Social Care, we will be
addressing some of the ways we see we should be
moving to try and address that divide and get
people working more closely together.
Q267 Chairman: Yesterday I tabled a question for
next week’s health questions, which you will be
relieved did not come out in the raZe, but it was
this: what would your estimate be of the costs of
administering the demarcation between health and
social care? One of the problems the Treasury has
with the statutory background to social care being
national systems which require means-tested
provision, the NHS side of it is free, and any
Treasury minister would be very concerned if we
were to suggest combining the two areas, and make
the social care entirely free. That would have
significant financial implications. However, what
struck me is that we have never come up with an
estimate of what it costs to police that demarcation
line. Do you have any thoughts on that? I know
that the amount of time we spend as a committee
and the amount of time the Ombudsman spends
investigating these cases, and the amount of people
we have got—an absolute industry involved in
arguing it from a health care or social care agency
aspect as to who is responsible. We have cost
shifting and cost shunting; we have the Delayed
Discharges Bill, and it still continues. There is a
huge amount of money that could be saved that
would oVset the implication, surely, of moving in
the direction where we have entirely free care, and
we end the division that no-one can define between
health and social care.
Dr Ladyman: I agree with you that there must be
a cost to it. We have not got an estimate for how
much it is. I am not convinced it is as substantial
as you think it is, and as we move forward and talk
about how we should be doing this over the next
hour, if we move forward to providing an easier
framework for making these judgments, then I
hope we can gradually eradicate those disputes. I
think personally, although I entirely accept the
public do not understand it, that it is possible to
distinguish between the two, and we do need to do
that because, as you said, we cannot provide all
social care free at the point of need. The Treasury
would just never accept it under any government
of any colour, red yellow or blue. We already spend
£12.5 billion on adult social care, under the current
system where people contribute to the cost of it. We
know roughly speaking that there will be four times
as many people needing care by 2050; and their
needs will be far more intensive. The fastest
growing cohort of the population at the moment is
people over the age of 100. To suggest that we
could quadruple the cost, and then go further and
not charge people and make it all free at the point
of need is just utterly, utterly impossible to
comprehend. We do have to keep a distinction
between the two, because I am afraid it is inevitable
under any flavour of government that people will
have to contribute towards the cost of their
social care.
Chairman: I do not think it is fair to throw in fiscal
measures that might be taken to recoup the money
from people who do not need that support, but that
is a factor that we should throw in. I was struck
yesterday—you said you think it is possible to
define the distinction between health and social
care, and I wish you well on that one because I have
met thousands of people who cannot. Yesterday,
we had a lobby of people from the Alzheimer’s
Society—and you probably met some of them
yourself. It struck me, talking to a number of
people who were caring for parents with
Alzheimer’s or dementia, that it really seems totally
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wrong to suggest that somehow in a complaint of
that nature, at some point you are moved from one
section to another and nobody really knows when
that happens. We will probably come back to that.
Q268 John Austin: Can I come back to the
confusion about the eligibility criteria and
particularly the Ombudsman’s report. You have
partly accepted the recommendation of the
Ombudsman’s report in carrying out the review
and asking SHAs to carry out reviews across
their areas.
Dr Ladyman: Why did you say “partly”?
Q269 John Austin: You did not fundamentally
adopt the national criteria and review—
Dr Ladyman: We are going to move to a national
framework and we have those discussions to have
as to exactly what that national framework will
include.
Q270 John Austin: Initially, you got the SHAs to
review the criteria.
Dr Ladyman: That was the initial stage, yes.
Q271 John Austin: Some of our witnesses have
suggested that that has reduced the postcode lottery
from 95 to 28, but there is still a diVerence of
interpretation between SHAs on those criteria.
Dr Ladyman: That is undoubtedly true, but there
was another stage in the process as well, do not
forget. As well as asking the 96 health authority
criteria to be replaced by criteria adopted by the
strategic health authorities, as a department we also
published criteria that they should base their
criteria on, so there was a central national criteria,
and then the SHAs, where each expected to adopt
their local processes and criteria to the national
system, and then were expected to go and make
sure that they had advice that the system they were
proposing to use locally was compliant with our
national guidelines and legally compliant. The
framework was sound on a legal basis. You are
right that on the face of it we only reduced it from
96 to 28, and therefore there were 28 diVerent
postcode lotteries; but actually those 28 were based
on the national guidelines, so there should have
been far more consistency between those 28 than
ever there was between the 96 they replaced. We
did that because, frankly, going from 96 to one, at
a time when we had this huge review to carry out,
our judgment was that it would just have been an
impossible task to do that. We are taking what we
see as being a progressive approach to meeting the
Ombudsman’s recommendations, and having got
the 28, having gone through the review, we will
move from here to a national framework, and we
will have that discussion over the next 12 months.
Q272 John Austin: You are giving an indication
that the new national framework will eVectively
have a single set of eligibility criteria.
Dr Ladyman: Certainly. There may be diVerences.
We will have to talk to the SHAs, because we have
to accept that there are two parts to the equation.
First, there is the eligibility criteria, and secondly
the process you have to go through in any
particular local area in order to have that
assessment made. Some areas have diVerent
problems than others. In a city strategic health
authority it is easy to get people together to carry
out multi-assessment cases. In a rural environment
it might be diVerent, and there might be diVerences
in the way people want to carry out the reviews that
are necessary in order to meet their own local
pressures and local issues. Broadly speaking, we
want to end up with a system where absolutely
everybody in England will be able to say, “the
assessment I have had would have come to exactly
the same conclusion, whether it was held in London
or Carlisle or wherever it was.
Q273 John Austin: The new national framework
will have a single set of national eligibility criteria.
Dr Ladyman: We have those discussions, but my
belief is that that is where we will end up. This is a
consultation; we are bringing the 28 strategic health
authorities together to identify best practice. They
are giving us a very clear message. They want to
have one single set of national eligibility criteria, so
my belief is that is what we are very likely to agree
with. If, in the course of these discussions, we find
that is not practical, we will have to have something
diVerent. At the end of the day the key has to be
that a constituent of ours in one part of the country
must know that they would have had exactly the
same decision wherever they had that decision
made anywhere in the country.
Q274 John Austin: In the report of the independent
review it refers to SHAs saying there had been a
staggering lack of guidance from the Department.
Would you ensure that that it is not the case in
the future?
Dr Ladyman: I would not accept that at all. We
worked incredibly closely with the strategic health
authorities and with the Ombudsman. I have not
heard what the Ombudsman has just had to say to
you, but I would be surprised if she has not pointed
out that we work very closely with her, and when
they bring issues to our attention we do try and
follow them up. Equally, when strategic health
authorities have identified that they have had
problems, whether it is a problem with a lack of
understanding or practical problems, we work very
closely with them to try and resolve the issues. I
would dispute that, but people’s perceptions are
their perceptions.
Q275 John Austin: My understanding was that one
of the recommendations of the Ombudsman’s
report was that the Department should review their
guidance to strategic health authorities on
eligibility for continuing care, and that was not
done, was it?
Dr Ladyman: What the Ombudsman would have
liked in the first place was for us to move to a single
set of national criteria, and we took the view that
that just was not a practical option when we had
a huge retrospective review to carry out, when each
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of those cases which were previously considered—
the errors had been made because of the attempt
to try and carry them out under 96 sets of criteria.
It was just too much of a task to go to a single set
of national criteria and a national system in the
time that the Ombudsman wanted us to carry out
the review. That is why we took a pragmatic view
that we would go to 28, and now having done that
and made what we believe is substantial progress,
we have taken the further step of saying we will
now go to the national framework. We are agreeing
with the Ombudsman. We have got to where the
Ombudsman wanted us to be, but we got there
perhaps over a greater length of time than she
would have really wanted. At least we got there,
and I do not think we would have got there if we
had tried to do it in one step.
Q276 John Austin: I am not suggesting one step,
but I was a member of this Committee 10 years ago
when we said there was basically inequity in local
eligibility criteria. Would you agree it has taken
rather a long time to accept the recommendation
that we made 10 years ago?
Dr Ladyman: I am certainly very happy to suggest
that the Government of 10 years ago made
mistakes!
Q277 John Austin: You mentioned the way in
which you were seeking to co-operate with the
Ombudsman, and we are aware of the letter that
the Ombudsman sent to the Department regarding
the confusion in SHAs on the whole procedure of
assessments under continuing care funding and
RNCC, and there was a suggestion that in some
areas the assessments were being done in reverse
order.
Dr Ladyman: Which of their letters was that?
Q278 John Austin: The letter to Ms McDonald on
1 February 2005. The Ombudsman told us earlier
that there had been a response, but I wondered if
that response could be put in the domain of the
Committee.
Dr Ladyman: I am happy to let you have that. I
suspect you are probably entitled to ask for it under
the Freedom of Information Act, even if I did not
want to give it to you. I am happy to give it to you.
Q279 Mr Burns: As we have been talking about the
Ombudsman, last September you very helpfully
made a ministerial statement about the current
situation with regard to the reviews, and with that
statement you had a very comprehensive chart by
strategic health authority on the number of
complaints that had been received on diVerent
timescales, the number of cases that had been
completed in their review and the percentages of
those that had been reviewed, and those that were
successful to the individual, i.e., the complaint was
upheld and money was paid to them as a result. Of
course, life has moved on since then, and
Parliament likes to know about these things. Why
did you block my question in December when I
asked you to update those figures?
Dr Ladyman: Block?
Q280 Mr Burns: You refused to answer it.
Dr Ladyman: No, I did not refuse to answer it.
What I wanted to do—
Q281 Mr Burns: What did you say then, if you did
not refuse to answer it? What was the answer to the
question?
Dr Ladyman: I had said that from a certain point
we stopped collecting the data. My understanding
of your question was that you were asking me to
overturn that decision and keep collecting the data.
Q282 Mr Burns: No, my question actually was the
question asking for the figures that you had given
in September, which from memory went up to
March 2004, be updated to July 2004. You said
that you did not keep the figures any more and you
would not publish them—though of course your
Secretary of State came to this Committee in early
January and when told about this told the
Committee that we could have that information.
When he wrote to the Committee he then said that
all strategic health authorities had now completed
their reviews on those timescales bar two, which
was not altogether a comprehensive answer along
the lines of your answer of September 2004, but it
suggested that you had the information, or the
Secretary of State would not have been able to give
that answer. I therefore ask the question again: why
will you not publish the information?
Dr Ladyman: You did ask that question and we did
give you an update, which referred back to our
written ministerial statement, and then gave you
the latest figures that we had. The fact of the matter
is that the review cases that we were asked by the
Ombudsman to look at were those people who had
been wrongly assessed in the past. As time goes on,
after we had carried out all of those review cases,
we continually had to review current cases. Current
cases come in all the time, and the data is becoming
increasingly confused. This was one of the reasons
for a lot of the controversy and a lot of the
headlines over the previous written ministerial
statements—all the people the newspapers said
were being denied the care they deserved. There is
confusion in the strategic health authorities
between the current cases that are coming in,
people who are now applying for continuing cases,
and the review cases that they were being asked to
provide. It is becoming impossible to separate the
two sets of figures.
Q283 Mr Burns: Why?
Dr Ladyman: For one thing, there is an
administrative cost in separating the figures.
Q284 Mr Burns: Why can the Secretary of State
give the answer in a slightly diVerent form, but you
cannot? The Secretary of State’s answer to our
committee was that all of the reviews had been
carried out except in two SHAs. That suggests that
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to produce that answer, he has the figures, because
if he did not have the figures he could not give
that answer.
Dr Ladyman: That implies that we have had the
recovery and support unit ring the strategic health
authorities and say to them, “have you completed
all the review cases that you were asked to
review?”—and all but two out of the 10,000 cases
that we have been asked to review—review cases—
there at this moment, as far as we are aware, 13
cases that still remain outstanding. If you want me
to give you a month-by-month account of that,
then I can give it. That is an administrative
overhead, and I just do not want to impose on the
strategic health authority.
Q285 Mr Burns: Hang on, Minister. When it suits
you, you are quite happy to provide those figures,
i.e., in September last year when you made a
statement to Parliament, when you were making
progress so it looked good for you—you were quite
happy, despite what you are now saying about
administrative burdens and costs—to provide that
information. But when the going gets tough and the
information might not be quite as helpful to your
department, you then suddenly start saying there
are administrative problems, there are costs. If the
Secretary of State—
Dr Ladyman: If the information we produced last
September was helpful to the Department, you
were not reading the newspapers.
Q286 Mr Burns: No, it was helpful to the
Department because it was showing that you were
making progress. It was singularly unhelpful to the
department because yet again you had missed one
of the committed deadlines that you had given in
public and to Parliament to have those cases
reviewed; so in that respect, no, it was not helpful.
It was helpful because we had a better idea through
the information of what the current situation was.
My question is—and you have just said that you
think there were 13 cases that have not been
completed. If you know there were 13 cases,
providing you are correct, then you, I would
suggest, know a little more about the figures or you
could not come out with the figure of 13. My simple
question is: why can Parliament not have these
figures?
Dr Ladyman: I am telling you the figures that I
know, and that is by ringing the strategic health
authorities and saying to them, “how many of your
review cases are still outstanding at this moment?”
The answer I am told is that there are 12 cases
outstanding. There is another one been done—
there are 12 cases outstanding. I can tell you for 8
of them the strategic health authority responsible,
and the reason that they have given us is that they
have had some staV shortages. The other four are
delayed partly because of the need to get notes
from the private sector, who have not been able to
provide them, and partly at the request of
representatives of the patients who have asked for
the decision to be delayed for one reason or
another. Those are the only 12 cases that I am
aware of from the review cases that are still
outstanding. We have got those figures by ringing
the strategic health authorities and saying to them,
“how many other review cases are still
outstanding?” If you were to ask me other
questions, though, such as, “how many cases are
you currently considering; and how long are those
cases taking?” there would be an administrative
overhead on the strategic—
Q287 Mr Burns: I am not asking that question.
Dr Ladyman: I am giving you the answer to the
question you wanted: there are 12 cases
outstanding.
Q288 Mr Burns: I can see that we are not going to
get any further, and I must say that I do think it
is an abuse of Parliament that you are not prepared
to provide those figures when you were quite ready
to in September of last year. One other question
slightly leads on from that. We had evidence, as
you know, from the Ombudsman’s oYce before
you, and their report states that they believe they
were misled by the Department on this whole issue
of carrying out the reviews and the deadlines. Do
you think that is a fair criticism?
Dr Ladyman: Absolutely not, and I would be
amazed if that is actually what she said to you.
Perhaps the stenographer—
Q289 Chairman: We will check the record as to
exactly what was said, because there was quite a
lengthy exchange about this. One of the issues that
I asked about was in relation to the evidence we
received last week over the diYculties in respective
reviews because of the lack of records.
Dr Ladyman: Absolutely.
Q290 Chairman: And the appalling state of records
in some of the private care and nursing homes. Did
that come as a surprise to you as a minister that
these diYculties were so severe in reviewing these
cases?
Dr Ladyman: It did come as a surprise to me, but
on reflection I realise that probably it should not
have come as a surprise to me because the fact of
the matter is that when assessments were being
made by this process, since 1995 when the original
decision was to have local criteria, people were
carrying out these reviews in good faith. I do not
suppose any of them considered for one second that
10 years later somebody was going to have to go
through their notes and try and see how they made
those decisions and why those decisions were made.
I suspect that people were making decisions;
decisions were reported to people. I have no doubt
there was record-keeping at the time associated
with those decisions, but after a period of time I
think it was perfectly reasonable, especially since by
definition many of these people will unfortunately
have passed away—the people who keep these
records probably assumed nobody was ever going
to want to go through these things for financial
purposes. It has been a huge task to get the records
back from a lot of these things. I was a bit surprised
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about the complexity of it all, but on reflection
perhaps we should not have been surprised. What
I take exception to in relation to what Mr Burns
has said is the suggestion that the Department
misled the Ombudsman. I have no doubt that we
may have given figures in good faith that
subsequently we have had reason to revise or we
have given information in good faith which
subsequently it has turned out we have needed to
correct. I can accept that that might have
happened, but the notion that either me or my
oYcials would have misled the Ombudsman, I take
very great exception to.
Chairman: It would be helpful if the record was
checked, and you can respond subsequently to
what was actually said.
amount of publicity which generated then a huge
amount of more cases that we had not estimated
for. In the periods that we said we would complete
the review we completed as many cases as we knew
about at the time we made commitments. However,
more cases came in and that was why some
deadlines were slipped. The reason that I provided
those written ministerial statements, far from
wanting to provide information that was helpful to
the Department, it was entirely because I felt that
Parliament had not been given accurate
information in the first place, through no fault of
our own, and therefore I made those subsequent
written ministerial statements to make sure that
Parliament had the information that I felt it was
entitled to to clear that up.
Q291 Mr Burns: You can look at the record, but
the word “misled” was used, as any member of the
public here listening, and all my colleagues round
this table listening—and just to narrow it down,
their going away in answer to a question to try and
clarify whether they though that applied to
ministers or to civil servants, and then are reporting
back to us. They are not reporting back to us as
to whether or not it was misled; it was who might
have misled them but it was ministers or civil
servants.
Q294 Mr Burns: We do not want to perpetuate this
for too long, but just one! You gave a commitment
that all the cases up to either December 2003 or
March 2004 would be completed by July 2004; and
your ministerial statement of September 2004
shows quite clearly that was not the case—you had
done about 88% of—
Dr Ladyman: If you look—
Q292 Chairman: I think there was a bit more
qualification than Simon has suggested. That is a
personal view. We will check the record, and
obviously you can come back to us on that.
Dr Ladyman: Before we go oV this subject, to be
frank with you I would take exception as well to
the Ombudsman dividing it up like that. If she feels
she has been misled, I have misled her because
oYcials work for me and for the Secretary of State
and I will take responsibility for any information
that she was given, and I will deal with it if anybody
has actually; but I can tell you that none of my
oYcials have at any time misled anybody. We may
have made errors, and I have no doubt that errors
can be pointed to, but I take great exception, and
I will take exception with the Ombudsman as well
if the record subsequently proves that she is
suggesting we have misled her, because that is
simply not the case. I have struggled to give
accurate information, and when I cannot provide
accurate information I have held up providing any
information until I know I can provide accurate
information.
Q293 Mr Burns: I think it is on the deadlines that
the review is being carried out, not on the
individual pieces of information.
Dr Ladyman: Let me comment on that. Yes, we did
make commitments for the speed that the review
would be carried out. At the time we made those
commitments we based them on estimates of the
cases we knew about at the time, based on our
discussions with the Ombudsman and our
discussions with the health authorities. Having
made those commitments and the publicity about
this that was in the newspapers, there was a huge
Q295 Mr Burns: So there was a commitment
broken that contradicts what you have just said.
Dr Ladyman: If you look at the number of cases
that we knew about, that we were talking about
when we made that commitment, we completed as
many cases as we knew about at that time. The fact
that some cases turned out to be more complicated
and therefore overshot the deadline we did not
know about at the time, and the fact that far more
cases came in so we had a bigger body of cases to
deal with, we could not estimate at the time. We
dealt with as many cases as we knew about at the
time we made those commitments in the time that
we said we would carry out those reviews.
Q296 Mr Burns: Your statement just has been
contradictory because you gave two qualifications;
one was the cases you already had that turned out
to be more complicated; but you knew about them
at the time you made the commitment. You may
not have known how complicated they were, but
you knew at the time you made the commitment
that all cases would be done by 31 July, and you
failed to meet that deadline—so the statement you
have just given is contradictory.
Dr Ladyman: It is not contradictory at all. I cannot
remember the number we knew about at the time
when we suggested deadlines for completing them.
We completed X cases in that timeframe. Some of
the cases at that time though turned out, for the
reason the Chairman has said, to be far more
diYcult to deal with than we thought because we
had to recreate records and go back to people’s
memories and re-examine patients where possible
in order to make the assessment. That was
something we had not factored in in the original
case, so I entirely agree that he review of some of
the people who we knew about at the time we made
those deadlines, went over the deadline. The
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number of cases we knew about at that time,
however many thousand it was, we dealt with that
many thousand cases inside the deadline; so we
were working at the pace that we said we would be
going to work at. It turned out that far more cases
then came in that we had not factored into the
equation, and some of them were more complicated
than we thought. We tried to deal with those as best
we could; and of course the advice we were given
throughout this was that the people doing the
reviews should prioritise the living. So cases where
we were dealing with people’s estates were given a
slightly lower priority than people who were still
alive. I felt that was the right advice to give and I
stand by that.
Q297 Mr Burns: Sorry, did you not just say that
some cases became more complicated so that you
could not complete them in the time—that you
knew about?
Dr Ladyman: I do not know how many diVerent
ways I can try and say this to you, Mr Burns.
Q298 Mr Burns: You are contradicting yourself.
Dr Ladyman: I am not contradicting myself.
Q299 Mr Burns: You are.
Dr Ladyman: I am making it quite clear that we
knew about a certain number of cases, when we
said we would be able to complete these cases by
a particular date. We underestimated the
complexity of some of those cases, so some of those
individual cases overshot the deadline.
Q300 Mr Burns: Yes, so you did not meet the
deadline.
Dr Ladyman: That I accept entirely. However, we
did complete within the deadline the same number
of cases as we knew about when the deadline was
announced.
Q301 Mr Burns: That is a diVerent issue.
Dr Ladyman: It just so happens that by the time
we reached the deadline there were several
thousand more review cases to be carried out.
Q302 Dr Taylor: Getting back to the national
frameworks and the quality of assessment, last
week we did not hear many concerns about the 28
sets of criteria. The concerns we heard were the
interpretation of these criteria, for example the
representatives from the Alzheimer’s Society and
from ICAS said quite clearly that the system was
not working. Again, from the Ombudsman just a
few minutes ago, we have got their statement: “In
more than half of the cases examined we found that
the assessments had not been carried out properly”
with a list of the ways that these were not carried
out properly. Under the new national framework,
when you are thinking about national assessment
tools will you be recommending just one set which
will fit within the single assessment process?
Dr Ladyman: In my mind—and we have to work
with the National Health Service to identify this—
the key is the single assessment process because that
is the way we can make sure that in the future these
reviews are carried out automatically. Individual
patients should not have to understand this system
in order to get their reviews; it should be a process
that is automatically triggered and automatically
carried out. The key to doing that is to have this
built in to the single assessment process. In terms
of the toolkits that we provide to do this, one of
the reasons why we have started this review with
the strategic health authorities is first of all to
identify best practice, because some strategic health
authorities are saying to us “we have a system that
seems to work perfectly”. They may be wrong
about that; the Ombudsman may be giving them a
telephone call in the next few weeks and telling
them how wrong they are about it; but some of
them believe they have a system that works very
well. Where people think that, then we obviously
want to adopt that as best practice. Whether it will
be one toolkit for everybody or several toolkits we
will have to discuss, because I am acutely aware of
the diVerence between making assessments in urban
environments compared with rural environments in
particular. One way of doing things might not suit
the entire country.
Q303 Dr Taylor: The Ombudsman was very clear
that there are examples of good practice. Is a
potential disadvantage of a robust assessment tool
that it really conflicts with professional judgment,
or can you allow space for that?
Dr Ladyman: I do not know whether my colleagues
want to address that because they have been having
the direct conversations with the strategic health
authorities. My instinct is that there does need to
be some room for a professional judgment, but how
we build that into an objective process which
presumably the Ombudsman will be keeping a
beady eye on over the next 10 years as well as she
has over the last 10 years, is the question that we
have to address. If we can do that and still end up
with objective criteria that everybody understands,
then instinctively I would see that as being
necessary. Ultimately of course professional
judgment is part of the assessment. It needs to be
the judgment of a group of professionals rather
than a single professional, but there does have to
be space for that judgment to be expressed.
Ms McDonald: Certainly some of the SHAs have
designed tools that give the general process and
approach, and then there is some room for
professional judgment based on the individual case,
because obviously the circumstances may suggest
that what the tool gives you needs to be adjusted.
Q304 Dr Taylor: I was very relieved when you said,
Minister, that the aim of the assessment will be to
produce the same conclusion wherever it is carried
out, so you are aiming for fairness. In relation to
timing, with the dissatisfaction of the way the
system is working at the moment, how quickly will
you be able to get the national framework through,
and I gather from one of our advisers that the
single assessment process is not being implemented
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in the way that was envisaged or at the speed that
the NSF anticipated. Have you any comments on
that?
Dr Ladyman: The single assessment process is being
implemented very successfully around the country,
and it is available everywhere. I would have to say
that my experience is that it is working better in
some places than others, but it is a complex process
and it would be surprising if, when you needed to
carry out multidisciplinary assessments, it was
working perfectly everywhere. As far as the single
assessment process and NHS continuing care is
concerned, we have always made it clear that as
part of the single assessment process, indeed as part
of the review for registered nursing care, there
should always be a determination as to whether
NHS continuing care is appropriate as part of that.
What I think we need to find a way of doing is
ensure that all older people undergo the single
assessment process. Sometimes what happens is
that there might be ad hoc judgments that this
particular old person is not ill enough to justify
going through the process, and I wonder if that is
where some of the errors get made and people find
themselves being discharged without having gone
through the single assessment process, and
therefore without an automatic triggering of the
review for NHS continuing care. That is one of the
things I will be wanting us to be looking at over
the year, because as you have already identified in
your evidence, it is no good us just looking at NHS
continuing care as if it stands in isolation; we have
to look at it alongside the other issues like the
registered nursing care contribution and the single
assessment process and the way assessments are
carried out in the community by social services
departments.
Q305 Dr Taylor: It is reassuring that you are
mentioning that it will always be an automatic
process, because we have had evidence that people
who could be eligible for continuing care are just
missing out and not being assessed, so we would
welcome the automatic process.
Dr Ladyman: Anybody being discharged from an
acute ward, especially where the reimbursement
system comes into play, we have given very clear
instructions that any older person being discharged
from an acute ward should have gone through the
single assessment process and should have
automatically been considered for NHS continuing
care before discharge. We have given very clear
guidance to all acute hospitals along those lines
already.
Q306 Dr Taylor: How do you plan to monitor that?
Dr Ladyman: Under the national service
framework, the National Director, Professor Philp,
monitors the implementation of the single
assessment process; and of course the healthcare
commission have a responsibility to do it; and also
I would be surprised if it was not becoming selfmonitoring in that if somebody is being discharged
from an acute bed, who might be eligible for NHS
continuing care, then the local council will be
picking up the bill, except for self-funders. Under
those circumstances, it is in councils’ interests, if
they think the person might be eligible for NHS
continuing care to make sure that they have been
assessed for NHS continuing care, because then the
council will not be paying the bills.
Q307 Dr Taylor: So this could come to council
scrutiny committees as well.
Dr Ladyman: Absolutely, and I would encourage
scrutiny committees to be looking at how the single
assessment process is working both within their
authority and within the local health service.
Q308 Dr Taylor: Can you give us any idea how
quickly you are going to be able to push the
national framework through so we have a single
assessment process, national assessment tools,
agreed criteria? How quickly is it reasonable to
think we can get that through?
Dr Ladyman: You use the word “push”. I want this
to be done as quickly as possible. I am worried
about pushing because this is such a complex area,
and frankly it has not been done right and people
have suVered as a result of it. I have said that
before and I will say it again. I think the reason
why it happened in the past—and I am not making
a political point here and I am not blaming the
previous government for it—was because decisions
were made too quickly without too much thinking.
I am loath to push decision-making. We have got
to get this right this time.
Q309 Dr Taylor: Can I change the word to “aim”?
Six months?
Dr Ladyman: My hope is that a minister can be
sitting here this time next year, explaining how it
has all been sorted out now.
Q310 Dr Taylor: Do you have plans for a national
training programme?
Dr Ladyman: Yes.
Ms McDonald: There are a number of steps in this.
There is awareness by NHS staV, and training is
an important step in that, and it is about bringing
consistency as well. The national framework will
have a number of levels, which includes both the
criteria and the assessment tools, but also a training
package and consistent information for users and
patients as well so that we are improving awareness
on four diVerent levels.
Q311 Dr Taylor: So you are aware of the need
for training.
Ms McDonald: Yes.
Q312 Mr Amess: Sadly, the husbands of two of the
constituents who came to the Alzheimer’s lobby
yesterday had died, so these decisions that are made
about funding are pretty important, and primary
care trust panels and their funding decisions will be
at the centre of this. I wonder what you feel about
these panels. Not all primary care trusts have them.
How important do you feel they are and how do
you see them working in the future?
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Dr Ladyman: Panels, by definition, are made up of
human-beings, and human-beings make errors and
judgments, and sometimes the judgments are not
where you want them to be. We have to aim for a
framework that everybody understands and aim for
systems that can make assessments that are open
and people can see what is happening, and ensure
that there is an understanding by those people who
have to go through the system as to what is going
on. Do I think all the panels involved in these
judgments meet those criteria at the moment? No,
I do not. That is where we have to be, and that is
what the next year has to be about—identifying
how we get to a position where we meet those
criteria.
Q313 Mr Amess: Will your review address the role
of constitution of these review panels?
Dr Ladyman: Yes, I think everything is on the
table.
Q314 Mr Amess: All up for consideration.
Dr Ladyman: Yes.
Q315 Mr Amess: Can we then move to mental
health. It is a very, very diYcult area for us all to
consider, but at the moment it appears that under
the current criteria a great deal of emphasis is put
on the physical aspects of disease. This certainly
disadvantages people with dementia. This was
highlighted in the Ombudsman case by Barbara
Pointon. Will new criteria take this into account?
Dr Ladyman: Let us just step back a second from
what you have said. NHS continuing care should
become available to you if you need the
involvement on a regular basis of healthcare
professionals in your treatment. That is the criteria.
It is not diagnosis-specific. It does not say, “you
have cancer; you can have NHS continuing care”
or “you have got dementia, you cannot have”.
People with dementia are as entitled to NHS
continuing care as anybody else. However, the
judgment has to be whether they need, in order to
maintain their condition or to improve their
condition the regular involvement of healthcare
professionals. If somebody with dementia does not
need that regular involvement of healthcare
professionals, then they will fall outside the criteria
for NHS continuing care. If they do require the
involvement of healthcare professionals, they will
come inside the criteria and they will get their NHS
continuing care, as was the case with Mrs Pointon.
She did get for her husband NHS continuing care.
I just take slight issue with you in the implication
of what you are saying, that one type of condition
rather than another benefits from this, whether you
have a mental health problem, whether it is
dementia, whether it is a physical problem, the
criteria needs to be around how much involvement
you need from healthcare professionals in order to
support your condition.
Q316 Jim Dowd: This was a point raised with us
yesterday during the lobby, when I am sure most
Members around the table met with constituents.
The problem with dementia is that they need
assistance with things that do not require
healthcare professionals, with some of the simpler
means of just staying alive. This would not qualify
as healthcare professional assistance, but because
of the nature, as a condition, they fall into that
bracket.
Dr Ladyman: That is right. They certainly need
help with personal care—there is no question about
that. Personal care however, under the current
system—and we will talk about this later no
doubt—is a means-tested service. For the poorest
people in society, about a third of them, we pay all
of the costs of their personal care. For another
third we pay some of the costs of their personal
care. Another third we expect to meet the cost of
their personal care because they are people on
significant incomes. The alternative is to go down
a route of free personal care. Let me emphasise—
I am sorry that there are no Liberal Democrats
here—
Q317 Jim Dowd: Why?
Dr Ladyman: Because I like to be rude to them to
their faces rather than when they are not present.
They deliberately mislead the public and people
with Alzheimer’s about what their policy is. Free
personal care is not the same as if you go into
residential care or a nursing home having your fees
paid for you. You still have to pay your board and
lodging, and in Scotland you still have to pay your
board and lodging. I suspect if you were to do a
poll of all those people from the Alzheimer’s
Society who came to see you yesterday, you will
find a large proportion of them think that free
personal care and free long-term care are
synonymous. That is, frankly, a callous
misinterpretation of policies on free personal care.
Indeed, let me just say that one of the things we
have done in England—when people go into a care
home people say they have to sell their own home
to pay their fees. In England, nobody has had to do
that since 2001 because we have given every single
council the money to put a charge on their property
to be sold after their death. I am not saying all
councils tell people about it and that all councils
have made it as freely available as they ought to
have done, but it is there. In fact, that is one of the
things that would have to be scrapped in order to
pay for free personal care, so under a system of free
personal care more people will end up selling their
homes in order to pay for their care. Secondly, the
only comparative system we have in the UK to
compare this with—if you are receiving care in your
own home, once the cost of that care reaches a
point where it is cheaper to put you in a care home,
you are put in a care home. When your care in a
care home reaches the point where it is more
expensive to put you in a long-stay hospital, you
are put in a long-stay hospital. NHS continuing
care is not an issue in those parts of the United
Kingdom because it does not exist, because you
cannot receive the support Mrs Pointon got to stay
in your own home anywhere else in the United
Kingdom. Mrs Pointon’s husband would be in a
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hospital—end of story, no argument, no caveats to
it. That is one of the ways that people have misled
the lobby and the Alzheimer’s Society about what
free personal care means.
Q318 Chairman: In relation to personal care,
particularly with people who have Alzheimer’s and
dementia, would you accept that if a person may
not necessarily need care by a registered nurse—
would you accept that 25 years ago a person with
those needs would probably be in hospital
getting care?
Dr Ladyman: Yes.
Q319 Chairman: Something very interesting
happened. I am the only politician around the table
who is not standing for re-election, so I am trying
to make a genuinely objective point, that successive
governments over a period of 25 years have allowed
a quite profound change that has taken place where
people would have received free nursing care,
where they now have to pay for that nursing care
that may indeed be provided by somebody who is
not a registered nurse. Would you accept that that
is a fair point?
Dr Ladyman: I accept there is a debate around that.
In parts of the United Kingdom the long-stay
hospitals have been retained, so they do not need
NHS continuing care. NHS continuing care was
introduced as a concept to deal with the fact that
in England policy was to remove the long-stay
hospitals. This was a policy of the previous
government which I happen to agree with—for
once. I do not think hospital is the right place for
older people if they can be supported in the
community. Most older people tell me, by a huge,
huge majority, that they want to stay in their own
homes for as long as possible. When they cannot
stay in their own homes, they still want to stay in
environments that are close to being like their own
homes, and where they can maintain their
independence and dignity. We will be saying a great
deal more about that in the Green Paper next week.
You are right: if you keep the long-stay hospitals,
if you keep a policy that says we are going to
institutionalise old people as soon as they have care
needs or as soon as they become a bit expensive,
then you do not need NHS continuing care and you
do not need to be having these complicated
debates. Frankly, I do not think it is an election
winner.
Chairman: I am not disagreeing with you about the
models at all; I entirely agree with you. But if I put
to my Yorkshire constituents the issue that 25 years
ago they would receive a form of care for
absolutely nothing and now they are paying for it,
one or two people feel a bit aggrieved about that.
That is the point I was making.
Q320 Mr Amess: This is not to try and trip you
up, but I am sure you would accept that the reason
Barbara Pointon got full funding was because she
took the case to the Ombudsman, so the
Ombudsman I would have thought in that regard
should be congratulated.
Dr Ladyman: Let me make the role of the
Ombudsman in this clear from the Department’s
point of view. We set up a system with checks and
balances, one of which is the Ombudsman. We set
up the Ombudsman to be the independent arbiter
of when we make mistakes, and that is what she is
doing. Yes, I congratulate the Ombudsman. I
congratulate the Government for putting in place
an independent check on the system to ensure that
ultimately everybody does get what they deserve.
Q321 Mr Amess: In dementia we are told that as
people decline they become less likely to qualify for
the continuing care because they become more
passive, but they still have considerable complex
needs which can be overlooked by emphasis on
stability. This is going back to your original
reaction to the point I made. I think it is a little
more diYcult really.
Dr Ladyman: It is diYcult. As the Committee
knows, I do have personal reasons for feeling very
sympathetic to people that are in this position, and
these are the issues that we need to thrash out over
the next 12 months. If people can come up with
sustainable ideas for how we can continue to
pursue this and do better, then absolutely I will see
to it, assuming the Prime Minister puts me back in
this seat after the election, that those things are
pursued. These are very, very complicated issues.
Everybody wants simple criteria, but frankly simple
criteria are often crude criteria, and crude criteria
will leave people who we want to support outside
the system. The criteria we end up with may have
to be more complex than people want, in order
exactly to try and deal with these issues where
people clearly should have a need for it. Having
said that, will we go down the route of free personal
care, which would be a way of resolving this point
at a stroke? No, absolutely we will not. It would
cost £1.5 billion at today’s prices, not the £1 billion
incidentally that the Liberal Democrats cost it at.
That is a matter of record. I have provided data in
the House of Commons Library and in the oYcial
record as to how that has been calculated, and so
nobody can argue with those figures. They have
been checked independently. By 2050 at today’s
prices the cost of free personal care will rise to
somewhere between £8.5 billion and £10 billion.
That will be close to 1% of gross domestic product.
There is just no way that that is a sustainable
system. We will not go down the route of saying
we will resolve the complexities of this problem by
having free personal care, because it would be
profoundly dishonest to say it. If I said it today,
some minister will have to sit here in three years’
time telling everybody why it is being withdrawn,
and I will not go down that route.
Q322 Mr Amess: Thank you for your frankness in
that regard. The other issued raised by the Pointon
case concerned the location of continuing care and
whether fully-funded NHS continuing care could
be provided to people in their own homes. When
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you answer that, can you san whether or not you
are considering the issue about making direct
payments to these people?
Dr Ladyman: First of all, NHS continuing care can
be delivered in any environment, in your own
home, in a nursing home, in a residential home with
nursing—wherever is the most appropriate place
for your care. In that, it diVers to those areas of
the United Kingdom where they have gone down
a free personal care route because, as I said, in
those areas they have to maintain the long-stay
hospitals. Mrs Pointon’s husband would not get
free NHS continuing care in her own home in those
areas. Her husband would be put in a long-stay
hospital. In that respect at least England I think is
more civilised in these matters. One of the issues we
are going to have to face up to over the next 12
months that we need a lot of debate and a lot of
thinking about is this issue of the practicalities of
saying people can have NHS continuing care in
their own home. To get NHS continuing care you
need the regular involvement of health care
professionals and those health care professionals
are a scarce resource. If you reached a point where
you had to have a doctor sitting in the front room
all day in order for you to stay at home everybody
would say that was not realistic. There is a grey
area between where it is realistic to support you in
your own home and where it is not and that is one
of the things we have got to debate over the next 12
months, where we define that grey area. The second
thing you talked about was direct payments. The
law is clear, the National Health Service cannot
make direct payments. So if you receive NHS
continuing care you cannot receive that through a
direct payment. What I have found, which is true
in Mrs Pointon’s case, is that health oYcials and
local council oYcials have had to work together
innovatively to interpret the existing legislation in
order for her to continue to use direct payments or
something close to direct payments and in order for
her to continue to provide for her husband’s care
in the way that was the case before she became
eligible for NHS continuing care, because we did
not want to see a disruption in his care. They have
had to work innovatively in order to stay within
the law and continue to support her in doing that.
The question is whether we should be expecting
people to work innovatively in order to get round
the law or whether we should just change the law.
That is something we can debate over the coming
months.
Q323 Mr Amess: Finally, you and I are both
English and I am sure when you said about
England being more civilised you were not
suggesting for a moment that Scotland and what
they decided to do was being less civilised in this
regard.
Dr Ladyman: Absolutely not. I do not know
whether you have noticed but my boss is Scottish
and I think he would have words to say if I was
suggesting that. The point I was making is that it
is constantly being put to us by the lobby which
represents older people and the lobby which
represents Alzheimer’s suVerers and by people who
I greatly respect—and there was one writing in The
Times yesterday, Clare Rainer—that somehow free
personal care is a moral issue and that we have
taken an ethically dubious position in having a
system where people have to contribute to their
personal care, and that those parts of the United
Kingdom which have introduced it somehow have
been ethically and morally superior to us in their
judgment. What I am saying is that what we have
got here is a sustainable position. Others can make
their own judgments in the United Kingdom as to
whether they have a sustainable position or not. We
have a system which helps the poorest, we have a
system which helps the sickest, we have a system
which helps the vast majority of older people and
they get the care they need and it allows them to
stay at home longer than in other parts of the
United Kingdom. I would argue that we have
actually arrived at a position which is not only
more sustainable but which has much to
recommend it in certain respects, and I would like
people to look a bit more objectively at some of the
decisions made elsewhere in the United Kingdom
in order to reflect on whether they are asking for
something which they would pretty soon start to
complain about if it was granted in England. That
is the argument I am taking back to those people,
ie do not ask for things which you may hate if you
got them.
Q324 Dr Naysmith: I want to ask something that
is really slightly oV what we have been talking
about just recently but it is something that I feel
very strongly about and it is also something I have
a personal interest in. I ought to declare that I am
President of the Dementia Care Trust in Bristol
which provides respite care mostly for carers in the
area round about. There is quite a diVerence
between the councils in terms of how much money
they are prepared to give for this service. It seems
to me, irrespective of who is paying for overall care
and so on in the home, that one of the things that
makes it more tolerable for carers, often relatives,
to look after the sick people in their home is the
chance that they can get some time oV, it may be
only three hours a week, which is absolutely crucial
in those circumstances. I just wondered whether it
is possible to try and ensure that that kind of
service is more widely available.
Dr Ladyman: Absolutely. I agree with you 100%.
That is why we have made the Carers’ Grant
available, which from 1 April will be £185 million
across England and we have said that we will keep
that going at least until 2008 when the current
Spending Review expires. That Carers’ Grant is
there largely in order to pay for respite care for
people. Incidentally, it is one of the grants that are
not available elsewhere in the United Kingdom. It
will be paid for with the money from not having
free personal care and which the Liberal Democrats
would have to scrap if they introduced their policy.
I would say that £185 million is not insignificant.
We have the carers’ strategy which requires
councils to have plans in place to support carers
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with respite care. Thanks to the Private Member’s
Bill that was recently passed we have the Carers
(Equal Opportunities) Act and we have the
previous carers’ legislation on the Statute Book.
The previous carers’ legislation means that every
carer in England is now entitled to their own
assessment of their needs. They can have those
needs met with direct payments and they can be
given money to pay for their own respite care if that
is what they want, or they can use the vouchers that
some councils operate for their respite care.
Because of the legislation which comes into place
on 1 April the council now has a duty to tell carers
about their rights. I believe that is a package of
support for carers—we can always do more and we
will look to ways to do more—in England which is
going to start making some serious inroads into the
problem that you have identified because you are
absolutely right, a break is the best way of
helping carers.
Q325 Mr Bradley: Let us go back to the Coughlan
case which you defined at the beginning of the
session and correct me if I am wrong when I say
that the judgement was what was the limit of the
social care as opposed to the amount of health care.
Are you satisfied that the guidance and eligibility
is clear to the various authorities, that they
understand that judgment in the terms that you
have expressed it and that they apply it
consistently? How do you monitor that
compliance?
Dr Ladyman: Whether it is applied consistently or
not I would accept is an open question. One of the
things we have to do over the next year is get to a
point where everybody is applying it consistently.
What I am confident about is that the current
criteria all recognise that when the point comes at
which social services say, “We cannot go further
than this because it would be ultra vires for us to
go further than this under the Coughlan
judgment,” NHS continuing care kicks in. So there
is no gap between a council’s responsibilities and
NHS continuing care because the NHS continuing
care criteria in the 28 areas say something along the
lines of when the council leaves oV, because it is
known they think they have no legal remit to go
further, you might be eligible for NHS
continuing care.
Q326 Mr Bradley: And you are satisfied that that
trigger mechanism is actually happening in the way
that you are describing it and that they are not
making that positive judgment about that overlap
to trigger the NHS continuing care?
Dr Ladyman: I am satisfied that people understand
that there is a point beyond which councils cannot
go and then NHS continuing care becomes the
priority. Where I am worried is that these issues are
not black and white. When you are supporting
somebody in a family that has a complex
condition—even in the best systems things are
slightly chaotic—it is diYcult to make judgments
about whether all their needs are being met. You
would always want to do more and give them more
support and councils will have the same feelings
about whether or not they have got to the point
where they just need to say that it is now a matter
for the NHS. There are judgments in there and
judgments always fall on some part of the
spectrum. Some people who perhaps are caring for
somebody in this condition will be saying to
themselves, “I think this needs more now. We need
to move to NHS continuing care”. What we need
to get to is a system where councils and health
providers—it almost comes back to where the
Chairman started us oV from—are working so
closely together that there is a smooth transition
between the two and I am not satisfied we have got
to that smooth transition yet. That is one of the
things we need to try and deal with over the next
12 months.
Q327 Dr Taylor: I want to try and explore the
confusion between continuing care and the high
band nursing contributions, but I think you said
that in the letter we can have that you wrote to the
Ombudsman that confusion is explored. Is that
right?
Dr Ladyman: Yes.
Q328 Dr Taylor: In the longer term would you plan
to merge those two systems, recognising that they
are virtually indistinguishable?
Dr Ladyman: There are no plans to do it at the
moment, but we have this review going on and if we
find a way which is financially sustainable, which is
easier to understand from everybody’s point of
view, I am not going to take the option oV the
table. I am not going to kid you either that there
are plans to do it at the moment. What I can assure
you is that anybody who is being assessed and who
might potentially be in high band nursing care
ought automatically to be assessed for NHS
continuing care and a positive decision ought to
have been made as to why they are in one or the
other.
Q329 Dr Taylor: So you will somehow make clear,
if there is a distinction, that there is that distinction
and you will describe that in detail?
Dr Ladyman: Yes. We will have to do that. That
is a minimum requirement that needs to come out
of the process that we go through over the next
12 months.
Q330 Chairman: One of the issues that I have
learned something from in this inquiry is that
there are certain incentives towards increased
dependency built into the system. We have had
evidence from the Royal College of Nurses where
they were suggesting that there is a need for the
eligibility criteria to be reformed to reflect a change
in emphasis on rehabilitation. They said,
“Currently the criteria focus on the level of a
patient’s dependency. This creates a perverse
incentive whereby if a patient’s condition improves
the level of funding available decreases.” Is that
something that you are conscious of and is it
something that you might be able to address?
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Dr Ladyman: I had not thought about it in those
terms, but what I am absolutely committed to is
helping people maintain their independence. I
believe that the way we have adult social care and
some aspects of health care structured in this
country at the moment encourages dependency
instead of independence. The Green Paper will
make it absolutely clear that we need a radical
transformation of social care in this country in
order to support independence and to do far more
to support people’s independence. I made a speech
yesterday in Leeds and in it I said that one of the
things we also have to do is to get away from this
notion that dependency and independence are at
opposite ends of the spectrum. We are all
dependent on something. I am not independent and
you are not independent, Chairman. We rely on
other people to do things for us, whether it is
emotional support, whether it is having the council
take away our dustbins, whatever it is. We are part
of society. We are dependent on each other.
Nobody is completely independent. People who are
frail or who have disabilities are never going to be
completely independent just like the rest of us.
They may need other types of support in order for
them to be able to support an independent life as
far as it is possible to do that, and that radical
transformation of adult social care which I am
going to be publishing next week talks about a shift
over the next generation in the way we deliver care
and our attitudes to care and the way we assess risk
and how we try and eliminate risk at the moment
when actually risk is quite often what brings quality
into our lives. It talks about how we can help
people stay at home more and, if they are not going
to stay at home, how we can help them maintain
independent attitudes and how we can be more
proactive about helping them to maintain their
health and physical prowess. I hope all of these
things you will see in the Green Paper when it
comes out.
Q331 Chairman: And you will look specifically at
the way the banding is aVected?
Dr Ladyman: Absolutely.
Chairman: It does strike me as a very perverse
situation. If it is working in that way then we would
have to look at it.
Q332 Dr Naysmith: Minister, when we were
looking into delayed discharges a couple of years
back the then Minister and the Chief Inspector of
Social Services both said to us very clearly that the
money that was provided through the registered
nursing care contribution should benefit directly
the residents for whom it was intended; in other
words, they should get the money and notice a
diVerence. You will know, because I have written
to you a couple of times on the subject and I have
not been too happy with the reply, that quite often
in that situation all that happens is the home takes
the extra money and there is no benefit to the
resident. What can we do about this? Are you
happy with that situation?
Dr Ladyman: Do I acknowledge that some nursing
homes have put their fees up in order to exploit
self-funders? I have no doubt that has happened.
Q333 Dr Naysmith: What can we do about it?
Dr Ladyman: Anybody who is in a nursing home
and contributing to their own costs should insist on
having a clear invoice for the services that are being
provided to them and those services must clearly
distinguish between their board and lodging, their
personal care and their nursing care and must
demonstrate that they are not being asked to pay
anything towards their nursing care. If people
believe that they are being asked to pay anything
towards their nursing care then they ought to
complain to the manager of the home or, failing
that, to the local social services department or the
Commission for Social Care Inspection. Nursing
care is delivered free by the National Health Service
and we reimburse nursing home owners for it. If
anybody has any reason to suspect that they are
paying for their nursing care then they need to
complain and the Commission needs to address
that.
Q334 Dr Naysmith: That is a very clear statement.
Is it right to put the onus on the frail residents,
some of whom do not have relatives who can fight
their battles for them? Should it not be spelt out by
the Department to the nursing home owners that
this should be provided to everybody before they
come in?
Dr Ladyman: It is. Standards of information to
people are dealt with in the National Minimum
Standards and we have just announced that we are
going to review the National Minimum Standards
over the next year or so. During the course of that
review we will need to monitor how successful we
are being at insisting on this because once it is in
the National Minimum Standards then the
Commission for Social Care Inspection should be
automatically inspecting whether the care homes
are following this rationale.
Q335 Dr Naysmith: I am not quite clear what you
are saying happens now that enables you to say
confidently that it should happen.
Dr Ladyman: The National Minimum Standards
set out what is expected in terms of information to
people who are in care homes and the Commission
should be inspecting that those standards are being
met. Let me pluck some figures out of the air. Let
us say there were some people who were selffunding in those nursing homes who were paying
£600 a week for residential care with a nursing
contribution on the top and along came the
National Health Service who said, “We will pay the
cost of the nursing care which is £150.” What
should have happened is that those residents’ bill
should have fallen to £500. Some care home
owners, I have no doubt from the letters I have seen
from colleagues and from my own constituency,
took the opportunity of saying, “If that resident
could previously aVord to pay £650 a week and
now they are only having to pay £500 a week then
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I am safe in putting up my residential costs to £600
a week because I know they’ve got the money in
the bank to pay it.” So they immediately inflated
their residential costs to take advantage of the fact
they knew there was an extra contribution being
made. As soon as this was realised—and this was
prior to me becoming a Minister—instructions
were immediately given by the Department, by my
predecessor, about the standard of information and
invoicing and the other measures that should be put
in place to stop this happening in the future.
Whether it did eliminate it completely is a judgment
call. Steps were taken immediately to try and stop
it happening as soon as it was realised it was
happening.
Q336 Dr Naysmith: Let us return to the question
of the retrospective review. There is a lot of
evidence that it has favoured the articulate and the
well-informed and that perhaps people who might
have been entitled to payments have somehow or
other escaped the net; the trawl for people has not
been as suYcient as it might have been. Would you
agree with that? I know we talk about leaflets being
put out and lunch clubs.
Dr Ladyman: It is an easy charge to make but it is
a diYcult one to gather evidence for. Certainly we
did ask strategic health authorities to carry out a
trawl of people who they think might have been
wrongly assessed and they should have done it
automatically. I would be surprised if we have
caught everybody in the net, but we tried. It may
be that some people who passed away and who
have not got relatives to have checked on this and
to have read the newspapers should have been
reassessed and their estate reimbursed and that may
not have happened. Certainly instructions were
given to carry out a trawl to try and do it as well
as we could, but this is an imperfect world.
Q337 Dr Naysmith: Did the Department consider
reviewing all records of continuing care from 1996?
I know you were not at the Department then, but
was that something that was considered?
Dr Ladyman: I think we would have to go back and
consult our records to see how thoroughly that was
considered at the time and drop you a line and
tell you.
Q338 Dr Naysmith: One of the things that have
contributed to the confusion, as we were hearing
earlier on, is the lack of suYcient good quality
records. Is that something that you really want to
put right through a review of the standards and
regulations exercised by the Commission for Social
Care Inspection related to care homes? Is that the
route that you intend using to make sure that this
does not happen in the future?
Dr Ladyman: The Commission should be checking
people’s record keeping. The single assessment
process should be improving the record keeping.
Maybe one of the things we will have to do over
the next 12 months is ask ourselves the question
how long after somebody’s death we should keep
these records for. As I said to the Chairman at the
outset, people who were carrying out assessments
in good faith back in 1995 could not have had any
possible idea that in 2005 we would want to go
through those records again and double-check their
decision. How long do we expect people to keep
these records for? That is something that we may
need to consider.
Q339 Dr Naysmith: Is three years long enough?
Dr Ladyman: If they had been given an instruction
that they should keep records for three years back
in 1995 we would have had all hell to pay now
because we would have done none of these reviews
and we would have had no records for any of these
people. On that basis you could argue three years
is not enough. On the other hand, to expect us to
keep detailed health and financial records on every
person receiving health or social care for longer
than three years is going to create a huge
administrative overhead. It may be that the
National Programme for Information Technology
can help us here and this is one of the things that we
will have to look at because we will have electronic
record keeping of everybody in the health care
system in the future. I suspect the civil liberties
groups will be knocking on our door wanting to
discuss how long we keep these records for, but if
we decide we do want to keep them then at least
it might give us a practical way of storing this
information for longer.
Q340 Dr Naysmith: Finally, we understand the
Department has taken the decision that successful
claimants will only be refunded money for the
actual costs they incur perhaps with adjustments
for inflation, but there is no question of
compensation for things like loss of homes or
people giving up their jobs which you heard about.
Do you think that is fair?
Dr Ladyman: Absolutely. I can understand why
people may have some concerns about it. The vast
majority of the £180 million in compensation has
not gone to helping the individuals themselves; the
vast majority of that money has gone into people’s
estates. If I was to say we will have compensation
for people who sold a house and the price of that
house went up, where does it stop? Somebody
could come to me and say, “I was intending to
invest this money in lastminute.com. I want to be
a millionaire now please”. Every penny that we pay
in this compensation is coming from your local
hospital and my local hospital and everybody else’s
local hospital. There is not some pot of money that
the Chancellor can give to me that was not being
earmarked for anything else; it comes out of the
National Health Service budget. It is right that
people get what they deserve. The principle that we
have chosen is one of unjust enrichment. It is the
principle that we believe would have been chosen
if the matter had been decided in a court. We
provide the money that we would have provided at
the time plus the Retail Price Index in order to deal
with inflation issues, but that is the limit of it.
People are campaigning for us to give greater
compensation. Let us put this on the record
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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir
because this has not been stated clearly in public
yet. We have not asked people to repay the benefits
that they were claiming when they were being
denied NHS continuing care and they would not
have got those benefits if they had been getting
NHS continuing care. We have not asked councils
to recover the money that they were paying
towards people’s social care costs and they would
not have received any of that money at the time if
they had been receiving NHS continuing care. They
would not have got the attendance allowance if
they were getting NHS continuing care. We have
not asked them to repay that. Some of the people
did not pay a penny towards the care and they have
now got compensation because their local councils
paid all their care costs and at the point when they
would have got NHS continuing care the NHS
would have taken over the bills. The NHS has had
to compensate those people even though not one
penny came out of their pocket at the time and we
are not asking for any of that to be recovered.
Those people are saying to me I should take
hundreds of millions of pounds out of the NHS to
pay people for houses that they may have had to
sell at the time—and nobody has had to sell a house
since 2001—and a lot of it will just be wasted
money. If we were to assess all the benefits we could
claim back I do not think they would be any better
oV anyway.
Q341 Dr Naysmith: It sounds a bit like a field day
for lawyers.
Dr Ladyman: That is why we are sticking very
clearly to the position that we believe is the one the
courts would have decided if it had ended up in
the courts.
Q342 Dr Naysmith: I think the Ombudsman is
pursuing the question of further compensation.
Dr Ladyman: The Ombudsman is reviewing it. One
of the things I would make clear to the
Ombudsman is that ultimately her duty is to judge
whether maladministration has taken place. Her
duty is not to try and impose her political judgment
over mine. I have made my judgment that we are
working in a legally compliant way. I think we can
defend that to her. I have made my judgment that
it is not a good use of National Health Service
resources to compensate people for all sorts of
other things on top of what they are entitled to. The
thing I would ask her to consider when she is
reviewing this is to do some sums and balance the
benefits that we could have claimed back from
people with the potential extra that they may have
got because of the price of a property going up over
a period of time; the two are pretty near the same.
Do we really want to be spending another five years
going back through all this again working out what
property prices were? Incidentally, if property
prices are the issue, are those people who sold their
property before the property market went down
going to give the money back to the NHS? I do not
think so.
Q343 Dr Naysmith: I am sure the Ombudsman will
have heard what you have had to say.
Dr Ladyman: I am sure the Ombudsman will have
heard it. I have had this conversation with her and
my oYcials are having this conversation with her
and we will continue to have it.
Q344 Jim Dowd: It was put to us last week by Mrs
Pointon and by others yesterday in the lobby that
care can be defined by those who give it rather than
the actual care that is being provided and
judgments are made on the basis of that. That is
the perception. Are you satisfied that that is not
happening and that the distinction is about what
care is provided rather than who provides it?
Dr Ladyman: Absolutely. If you are talking about
the eligibility criteria for NHS continuing care,
clearly that includes the involvement of health care
professionals. So to that extent it is defined by the
people who provide that care because if anybody
could provide that care they are obviously not
health care professionals and therefore you may be
eligible for NHS continuing care. This is a complex
argument. What I think Mrs Pointon’s case has
demonstrated very clearly is the benefit of direct
payments, because when Mrs Pointon’s husband
was being supported by social services the care
package that they tried to provide directly was not
adequate for her husband’s needs, it did not meet
the flexibility that she expected for her husband.
She then moved on to direct payments where she
is organising the care herself and immediately the
standard of care was improved because she was in
control of it. That is exactly why when we produce
the adult social care Green Paper next week we are
going to be saying direct payments for many people
are the way to go and we need to do more to
encourage people to use those direct payments. The
issue that I was talking about in answer to
questions by Mr Amess then comes into play, ie if
you become entitled to NHS continuing care you
are no longer allowed to organise the care yourself
through direct payments and therefore you have to
have a system of care imposed on you. That is an
issue that we have got to sort out somehow. I have
met Mrs Pointon, she has come to my oYce and I
have had meetings with her to discuss her case and
the way that her care was organised and the
experience that she had and I entirely agree that we
need to do better about the way we provide care
and that is what I hope next week is going to be
all about.
Q345 Chairman: Mr Muir, I am conscious we have
not included you at all. You have a very competent
Minister beside you. Is there anything you would
like to add?
Dr Ladyman: He has been passing me lots of notes!
Mr Muir: I do not think I need add anything,
thank you.
Chairman: Minister, we are most grateful to you
and your colleagues for coming along this morning.
I am conscious that this could be the last public
meeting of the Committee before a General
Election. As I will be disappearing in the election
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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir
I would like to place on record my thanks to the
Department for co-operating with various
inquiries. I would also like to thank the staV of the
Committee for the excellent support they have
given me over many years, our specialist advisers
in this inquiry and many others and, in particular,
my colleagues, friends and members of the
Committee for their support. It has been an
enormous privilege to chair this Committee and I
hope we have made a bit of a contribution to
improving things.
Mr Amess: I think there is someone in the audience
who has come ready with musical instruments
perhaps to strike up a fanfare. I just simply want
to place on record that throughout the two
Parliaments that you have chaired this Committee
you have demonstrated yourself to be firm, fair and
you have displayed genuine convictions. It has been
an honour and a good laugh to be a member of this
Health Select Committee and your part in making
our proceedings so valuable has been absolutely
splendid. I know that I speak for my colleague
when I say that we do wish you and your family
well for the future.
Q346 Chairman: Thank you very much.
Dr Ladyman: On behalf of the Department of
Health and the Government, may I also thank you
for your chairmanship of this Committee. You
have not always been a comfortable partner and
occasionally you have come up with advice that we
did not agree with, but we have always known how
importantly you take these issues and we thank you
for your eVorts.
Chairman: Thank you very much.
Supplementary evidence by the Department of Health (CC 9A)
Case Finding
1. Following the Health Select Committee hearing on the 17 March, Dr Stephen Ladyman promised to
send a note to the committee on the proactive eVorts undertaken by SHAs to identify cases where a wrong
decision about continuing care funding may have been made in the past.
2. The Department issued a template to SHAs which called for SHAs to identify cases since 1996, and
all SHAs have followed this advice:
— All cases brought to the attention of the SHA/PCT should be reasonably investigated.
— In line with the Ombudsman’s report SHA/PCTs should take steps to identify other cases since
1996. It is for NHS bodies locally to decide what is reasonable and proportionate action to make
people aware of the review process. But a reasonable approach may include contacting local care
homes, local groups (such as Age Concern) who produce newsletters or advice lines, and publicise
through any other means the fact that this review is taking place. This may include, where
appropriate, an approach to specific individuals. In addition, where criteria were clearly not
consistent with the existing law and the Coughlan judgement, to identify any patients who asked
for review and were turned down, so that their case can be re-examined.
3. All SHAs undertook advertising and publicity in order to raise awareness of the restitution process.
Local publicity by SHAs has brought restitution to the attention of a significant proportion of those who
had funded their own care, or their families. This group are those who stand to receive financial benefit from
undergoing the extensive review process. Those who were funded from the public purse (around 70%
nationally) would see no benefit in undergoing the often painful and stressful review process, while some
others who were deceased may not have had heirs who were willing or able to pursue restitution.
4. All living individuals in care homes providing nursing care are subject to reviews by the NHS and so
should have had their case looked at again since the beginning of the restitution process. Social service
departments have been well aware of the review process and able to identify individuals who they support,
who may need to be reconsidered.
5. At least one SHA undertook some further “case finding” by examining records and following up
individuals where there appeared to be a chance of a wrongful decision. In one SHA this identified a further
1,000 cases and only 20 of these cases were worth taking further. Of these 20 cases only a very small
percentage were eligible for relatively small amounts of restitution. The cost to the NHS of these
investigations, particularly where the recipient is deceased, outweighs the slight possibility of a small amount
of recompense being owed to a very small number of deceased individuals, assuming that the next of kin
and their records are traceable.
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COPY OF A LETTER FROM THE DEPARTMENT OF HEALTH TO THE OFFICE OF THE
HEALTH SERVICE OMBUDSMAN (CCB)
7 March 2005
Dear
Continuing Care Funding and Registered Nursing Care Contribution
Thank you for your letter of 2 February. I’m sorry for the delay in replying—as you know I was on jury
service till mid-February.
We certainly agree with your analysis of how continuing care and the Registered Nursing Care
Contribution (RNCC) fit together, as is shown in the following paragraphs from the 2003 guidance on NHS
funded nursing care (and this is emboldened in the actual guidance):
The Links with NHS Continuing Care
18. Regardless of the eventual setting in which an individual is likely to be cared for, in carrying out a joint
assessment of an individuals’ needs, the first consideration should always be the extent to which that
person meets, or does not meet, the criteria for NHS continuing healthcare.
19. This must be done on a case-by-case basis, looking at all the individual’s needs—for medical and
nursing care as well as therapeutic and personal care. NHS funded nursing care is part of a spectrum
of care, where people need a mixture of nursing and social care. It is diVerent from, and is not a
substitute for, fully funded NHS continuing care, where a person’s health needs will be beyond the
scope of what can be provided through NHS funded nursing care.
You also asked about the background to the NHS funded nursing care policy. Following the Coughlan
judgement and the Royal Commission on Long Term Care, it was recognised that there was a group of
nursing home1 residents, who were not entitled to full funding by the NHS but who were receiving the
services of a registered nurse. The policy of “NHS funded nursing care” was to correct the anomaly that
this group of care home residents were charged for the services of a registered nurse on a means tested basis.
The purpose of section 49 of the Health and Social Care Act 2001 was to separate out the services of the
registered nurse from the rest of the care which could be provided by social services in a nursing home and
ensure that it was funded by the NHS.
An assessment by the NHS of the need for the services of a registered nurse is the means to access this
care (or NHS funding for the care). The decision by Ministers in England was that this assessment (and
payment) should include a measure of the need for the services of a registered nurse. In Wales, however, the
assessment was a simple yes/no decision, which triggered a flat rate payment towards the nursing home fees.
A workbook was developed by nursing professionals, based upon professional judgement and work already
done by the Royal College of Nursing, to determine the level of need for services from a registered nurse.
This was not a full assessment, but only concerned with determining the level of input from a registered
nurse.
The determination of the need for care from a registered nurse, the RNCC, was rolled out through a
training programme in September 2001. At that time it was made clear that this “determination” was only
relevant for nursing home residents who had already been assessed as having a need for care which could
be met by social services ie that they had already been assessed as ineligible for care fully funded by the NHS.
The workbook reiterates this point.
So the RNCC was a means of determining the NHS’s contribution to a joint package of care, where it
was already clear that the NHS was not fully responsible for the care, but the services of a registered nurse
were required. If the care had been provided in the person’s own home or a residential home this would have
been met by the community nursing service, but since it was provided in a nursing home which already
employed registered nurses, the NHS provided a proportion of the fees. The amount paid was based on the
assessment of the level of need for care from a registered nurse ie. “high”, “medium” or “low” banding.
Another way of describing this would be “above average”, “average” or “below average” need for input
from a registered nurse to a package of care in a nursing home, a package of care which was not entirely the
NHS’s responsibility (and did not meet the criteria for fully funded NHS care). From research that was
available at the time we knew that a resident received on average an hour per day of input from a
registered nurse.
At the time this was introduced in October 2001 there were 42,000 nursing home residents who were
funding their own care in nursing homes. These may or may not have had an assessment for fully funded
NHS care in the past, but the training was clear that the RNCC determination should not be carried out until
eligibility for fully funded care had been considered and it was decided that the individual was not entitled to
fully funded NHS care. In April 2003 a further 90,000 nursing home residents, who had previously been
assessed and funded by social services, were assessed in a similar way.
1
I will use “nursing home” throughout as this was the nomenclature at the time, of course they are now known as “care homes
providing nursing care”.
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All these residents should receive regular reviews (three months after first entry to the home and then at least
annually), and additionally on request, from either the home or the individual/family, if the resident’s
condition changed significantly.
As the understanding and focus on fully funded NHS continuing care has increased over recent years,
confusion at a local level has arisen. This has been identified through your investigations and Melanie
Henwood’s report. This seems to be due to the diVerent nature of the approach at the two stages (assessment
of total need for care and determination of need for input from a registered nurse), the use of the word
“nursing” to mean diVerent things, and some misreading of certain paragraphs of the guidance. Overall
there seems to be a lack of understanding that the decision on full funding by the NHS must come first,
before the decision on the amount of input from a registered nurse becomes necessary.
When the Minister, Stephen Ladyman, announced the work to develop a national framework for NHS
continuing care he made it clear that this should include NHS funded nursing care. Also the development
of the Single Assessment Process, and ensuring all aspects of care needs are taken into account through that
process, has already been identified as the way to make sure the process is handled correctly and consistently.
This will be the opportunity to clear up confusion and there could be options for a significant change to the
interface between NHS funded continuing care and NHS funded nursing care. However, this change will
follow Ministerial decisions, public consultation and careful implementation to ensure that any changes for
individual care home residents are not disadvantageous or uncoordinated. It will therefore take some
months.
In the short term I have already indicated to SHAs that we will be asking them to confirm that all PCTs
are now following the correct procedure (ie making the decision on full NHS funding before considering a
RNCC determination); and put in place a series of reviews to ensure that residents in the high band (between
15,000 and 20,000 people nationally) have been clearly assessed against the criteria for full funding. As we
have discussed it would be very helpful if your team could help us with documenting practice which
distinguishes between the two sets of criteria, and practice which must be avoided if correct decisions are to
be made, in order to assist PCTs and SHAs in reviewing these cases.
I hope this is helpful and would welcome further discussion on how we can work together to clarify
matters and ensure the system works as it should do for all individuals.
Supplementary memorandum by the Parliamentary and Health Service Ombudsman (CC 23A)
I write following the Health Select Committee meeting of 17 March 2005, which my Deputy, Trish
Longdon, attended, along with Colin Houghton, Head of the Continuing Care Team. Once again, I would
like to apologise for not being able to appear before the Committee personally. Thank you for your
understanding on this issue.
I believe that the Committee requested some further information and I am pleased to respond.
You asked us to provide you with some additional information on the regional spread of the continuing
care cases which we are currently investigating.
I attach a breakdown by Strategic Health Authority (SHA) of the cases in hand. You will see that all SHAs
are included and that the complaints against each which we are currently dealing with range from one to
92. However, as I know my Deputy pointed out, it is diYcult to draw conclusions from this data. My oYce
is demand led; the absence of complaints cannot be taken to suggest good practice, or vice versa. The number
of complaints may, for example, simply reflect local publicity or an active advocacy service.
Below, I cover four examples of good practice in diVerent bodies. You also sought examples of good
practice in handling applications for full NHS continuing care funding.
These are:
Greater Manchester SHA
—
—
—
—
strenuous eVorts to obtain all available evidence;
good level of relative/carer participation encouraged;
full list of panel members considering applications; and
detailed explanation for decisions.
Avon, Gloucestershire & Wiltshire SHA
— clear, easy to understand process;
— carers/relatives involved at all stages;
— excellent leaflet and policy documents: available on their web-site;
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— continuing care leads at the SHA have firm grip on, and understanding of, purpose and
procedures, and have taken full ownership of the entire process; and
— very robust appeal process: prepared to overturn PCT decisions on the merits of each case.
North Norfolk PCT
— full consideration of all time-frames for all patients.
South West Peninsula SHA
— appeal panel invites carers/relatives to attend; and
— detailed records of panel discussions kept.
I would also like to take the opportunity to clarify one of Colin Houghton’s answers to the Committee.
When asked if he thought there should be one assessment tool, he agreed. I would like to make it clear that
he should have said that there should be a single set of assessment tools, as set out in my retrospective report
on continuing care. I am sorry if this was not clear during the evidence session.
Finally, there was an exchange about the reliability of information given to me by the Department of
Health in late 2003 and early 2004. To avoid any confusion, I refer to the statement I made in my recent
report (page 4, paragraph 5):
“Although we had indicated in our report in February 2003 that ‘significant numbers of people
and sums of money are likely to be involved’, the large scale of applications for retrospective review
and restitution was unexpected. In view of this, the Department of Health extended the deadline
for dealing with them to 31 March 2004. We passed on to the Department of Health early concerns
that we had heard from NHS bodies about diYculties in meeting both the December and March
deadlines. However, on both occasions the Department assured us that their information showed
the targets would be met and we passed on these assurances to complainants, their representatives
and Members of Parliament. It became evident that the Department’s information was unreliable.
It was very disappointing that in September 2004 the Parliamentary Under Secretary of State for
Community reported that only 57% of the retrospective reviews (6,644 out of 11,655) had been
completed by the extended deadline of the end of March 2004. This prompted a flood of
complaints to us—mainly from frail, elderly people who were themselves carers or from their
relatives—about delays in receiving a decision.”
March 2005
IN HAND CONTINUING CARE CASES
Avon, Gloucestershire and Wiltshire Strategic Health Authority
Bedfordshire and Hertfordshire Strategic Health Authority
Birmingham and The Black Country Strategic Health Authority
Cheshire and Merseyside Strategic Health Authority
County Durham and Tees Valley Strategic Health Authority
Cumbria and Lancashire Strategic Health Authority
Dorset and Somerset Strategic Health Authority
Essex Strategic Health Authority
Greater Manchester Strategic Health Authority
Hampshire and Isle of Wight Strategic Health Authority
Kent and Medway Strategic Health Authority
Leicestershire, Northampton and Rutland Strategic Health Authority
Norfolk, SuVolk and Cambridgeshire Strategic Health Authority
North and East Yorkshire and Northern Lincolnshire Strategic Health Authority
North Central London Strategic Health Authority
North East London Strategic Health Authority
North West London Strategic Health Authority
Northumberland, Tyne and Wear Strategic Health Authority
Shropshire and StaVordshire Strategic Health Authority
South East London Strategic Health Authority
South West London Strategic Health Authority
South West Peninsula Strategic Health Authority
South Yorkshire Strategic Health Authority
Surrey and Sussex Strategic Health Authority
Thames Valley Strategic Health Authority
Trent Strategic Health Authority
West Midlands South Strategic Health Authority
West Yorkshire Strategic Health Authority
30
13
21
92
5
42
43
27
33
9
19
18
5
22
10
21
13
12
22
9
9
39
16
29
13
52
1
21
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Correspondence between Ms Anne McDonald and the OYce of Parliamentary and
Health Service Ombudsman (CC 23B)
CONTINUING CARE FUNDING AND REGISTERED NURSING CARE CONTRIBUTION
I am writing to seek your clarification and comments on the issue of high band Registered Nursing Care
Contribution (RNCC) and full NHS continuing care funding (NHS CC).
As you are aware, from Melanie Henwood’s report and from the Ombudsman’s follow-up report on NHS
funding for long-term care (HC 144, 16 December 2004), there has been considerable confusion across
strategic health authorities and trusts as to the relationship, if any, between RNCC and NHS CC. This is
not a theoretical issue. We have a large number of complaints where the patient has been found to fulfil the
requirements for the high band of RNCC, but the complainants argue that NHS CC funding should have
been granted. We are “parking” these complaints for a short period, rather than launching a series of
investigations against trusts and health authorities, in the expectation that we can clarify matters with you
and agree a way forward.
Our view, confirmed by independent legal advice, is that NHS CC and RNCC are two completely separate
funding systems. This is made clear by a number of statements contained in various directions concerning
both continuing care and free nursing care. Circular HSC 2001/015: LAC (2001) 18 (“Continuing care, NHS
and Local Councils’ Responsibilities”), paragraph 10 states:
“10. Section 49 of the Health and Service Care Act 2001 will remove from local councils the
responsibility for providing nursing care by a registered nurse. Directions will require the NHS
to take responsibility for such care in the future, including those currently self-funding their care.
Guidance on this will be issued over the summer, with the introduction of free nursing care from
October 2001. None of this guidance will alter the NHS’ existing responsibility to provide a full
package of NHS services where there is a primary health need.”
This later Guidance, concerning the introduction of free nursing care (HSC 2001/017: LAC (2001) 26),
contains a similar statement at paragraph 9:
“9. The directions relate only to nursing care as defined in section 49 of the Health and Social Care
Act 2001 [care by registered nurses]. They do not relate to any other kind of care. In other words,
the obligations of the NHS in relation to other types of care (including other types of nursing
care) remain.”
This statement is again made in the “NHS Funded Nursing Care Practice Guide and Workbook”.
Paragraph 1.7 states (in bold print):
“1.7 These responsibilities [for continuing NHS health care] will remain unchanged; the requirement to
fund the registered nursing care of people in care homes will not reduce the need to also make provision
for continuing NHS health care.”
The message should, therefore, be clear: the provision of free nursing care (RNCC) has no eVect on other
rights to the provision of free care that a person may have. Given the respective benefits of NHS CC over
RNCC, it is equally clear that a person in need of ongoing health care should first be assessed for NHS CC
eligibility. If found eligible, the assessment process stops there and RNCC considerations are unnecessary.
If, however, a person is not eligible for NHS CC, a separate assessment of their need for care by a registered
nurse (the RNCC assessment) is normally warranted.
I know from our informal discussions on this issue that we agree that this is the correct approach.
However, from the complaints we have received, it is apparent that many trusts are carrying out the two
assessments in reverse. They are first determining whether a patient is eligible for RNCC, and if so, at what
band. They then assess NHS CC eligibility, disregarding those nursing needs that have led to the RNCC
banding. Consideration of the entirety of an individual’s health needs is therefore absent when NHS CC is
assessed. The result is that many people are not being properly considered for continuing care funding.
Where we see this wrong approach, we are writing to the trust or strategic health authority and requesting
a re-review, with the right approach. Again, I think you will have no diYculty with this, and indeed I think
you have pointed strategic health authorities towards the right approach.
A common expression of this mistaken prioritisation of the RNCC assessment over a NHS CC assessment
derives from the wording of the Coughlan judgment. At paragraph 30 of the Coughlan judgment, the Court
of Appeal expressed its view of the nursing care that could lawfully be provided by a local authority as part
of its social care package:
“(e) The distinction between those services which can and cannot be so provided is one of degree which
in a borderline case will depend on a careful appraisal of the facts of the individual case. However,
as a very general indication as to where the line is to be drawn, it can be said that if the nursing
services are:
—
merely incidental or ancillary to the provision of the accommodation which a local authority
is under a duty to provide . . .
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— of a nature which it can be expected that an authority whose primary responsibility is to
provide social services can be expected to provide, then they can be provided [by local
authorities as part of a social care package].”
The rationale that is given to many complainants for refusal of full funding is some version of the
following:
“Because care that is being delivered by registered nurses is no longer being provided by local
authorities (but funded by the NHS through RNCC), this care no longer goes into the equation
as to whether the overall nursing provision is more than merely incidental or ancillary to the
provision of accommodation.”
In other words, a person’s needs for registered nursing care do not count towards eligibility for NHS CC
funding as that aspect of care is already funded through RNCC. I would appreciate your agreement that
that approach is also wrong.
A further and most serious consequence of this mistaken approach is that it allows, and indeed
encourages, individuals with high levels of health care need to be assessed at high band RNCC rather than
as eligible for NHS CC funding. It seems to us, and is supported by our legal advice, that if a person’s needs
for registered nursing care are deemed to be at high band RNCC level, it is diYcult not to say that that person
should also be eligible for NHS CC funding, given the similarity of the wording. I explain this further below.
The Department of Health Guidance HSC 2001/015 sets out, at Annex C, the key issues that health
authorities should consider in establishing their eligibility criteria for NHS funded continuing care. The ones
most relevant for these purposes are paragraphs 2–4:
“2. The nature or complexity or intensity or unpredictability of the individual’s healthcare needs (and
any combination of those needs) requires regular supervision by a member of an NHS multidisciplinary team, such as the Consultant, palliative care, therapy or other NHS member of the
team.
3.
The individual’s needs require the routine use of specialist health care equipment under supervision
of NHS staV.
4.
The individual has a rapidly deteriorating or unstable mental, physical or mental health condition
and requires regular supervision by a member of the NHS multi-disciplinary team, such as the
Consultant, palliative care, therapy or other NHS member of the team.”
Although the wording of Annex C paragraph 6 and paragraph 22 of the main guidance could be read to
exclude nursing care need alone from NHSCC, these paragraphs sit most unhappily with the three
paragraphs just quoted which would seem to include it.
As you are aware, despite the inherent contradictions, these key issues have become the eVective eligibility
criteria for strategic health authorities across the country.
There is much confusion over whether intensity of health care need alone, ie without complexity or
unpredictability and therefore capable of being met by nurses alone, can qualify a person for NHS CC. This
seemingly stems from paragraphs 22 of HSC 2001/015 and 6 of Annex C where it is stated that a need for
care from a registered nurse alone is not suYcient reason for receiving continuing NHS health care. Our
interpretation of these paragraphs is simply that supervision by a registered nurse does not, on its own, mean
that someone should receive NHS continuing care; their health needs still have to be suYciently complex,
intense or unpredictable. These paragraphs are not saying that a need for nursing care alone, regardless of
how intense, can never qualify a person for NHS CC.
This follows from our understanding of the Coughlan judgment: it established that intensity of health care
need alone can establish eligibility for NHS continuing care. This is reiterated in paragraph 2 of Annex C,
quoted above, that lists “nature”, “complexity”, “intensity” and “unpredictability” as alternatives, not as
cumulative factors, ie meeting only one is suYcient to qualify for NHS continuing care. It would, however,
be helpful if you could confirm that this is also the Department of Health’s understanding.
By contrast, the accompanying Guide and Workbook to HSC 2001/017: LAC (2001) 26 describes the
needs for registered nursing care people must have to qualify for high band RNCC at paragraph 3.8:
“The High Band
3.8 People with high needs for registered nursing care will have complex needs that require frequent
mechanical, technical and/or therapeutic interventions. They will need frequent intervention and
re-assessment by a registered nurse throughout the 24-hour period, and their physical/mental
health state will be unstable and/or unpredictable.”
This definition does not allow for complexity, intensity and unpredictability of health care needs to be
alternative types of qualifying need. Rather, a person must have “complex needs”, and their physical/mental
health state must be “unstable and /or unpredictable” in order to receive high band RNCC. A person must
therefore either have complex and unstable, or complex and unpredictable health care needs. This, in itself,
appears to create a higher threshold of health care need than would qualify a person for NHS CC.
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In addition, however, a person will also need “frequent intervention and re-assessment by a registered nurse
throughout the 24-hour period” (my emphasis). This again appears to be a higher threshold than for
continuing care eligibility, where the healthcare needs must only be such that they require “regular
supervision by a member of an NHS multi-disciplinary team”. Of course, a registered nurse could be a
member of the NHS multi-disciplinary team.
Consequently it is diYcult to see how a person with healthcare needs that properly place him or her at
high band RNCC would have even reached the stage of an RNCC assessment had he or she been properly
assessed for NHS CC. This is because the level of health care needs that warrant high band RNCC would
seem to be, at the least, equivalent to those that should qualify a person for continuing care funding, if not
higher. It would seem to us therefore that a person properly assessed for nursing needs and in receipt of high
band RNCC, on the basis that the person has intense nursing needs and/or complex nursing needs, would
qualify for NHS CC funding.
It is our view that the threshold for high band RNCC was set at such a level that confusion with NHS
CC was inevitable, and that injustices will continue to occur without urgent action to clarify matters. The
current situation has worked to the disadvantage of many old and vulnerable people and their relatives who,
as a result, have been wrongfully refused continuing care funding.
Due to our concerns about the compatibility of high band RNCC with refusals of NHS CC, we placed
on hold the further consideration of complaints where the aggrieved was in receipt of high band RNCC.
Having now considered this matter further, and taken advice from Counsel, we ask that the Department
provide urgent clarification as to the intention behind the words quoted above, and clarification as to how
you require practitioners to distinguish between eligibility for high band RNCC and eligibility for NHS
continuing care funding. Upon receiving that clarification, the Ombudsman may then seek further advice
from Counsel as to the legality of that approach and the decisions made by trusts and strategic health
authorities in complaints we are holding and decide how we should proceed on the complaints we have on
this matter. This could be by launching a series of investigations against trusts and authorities, or,
preferably, by us agreeing a way forward on the matter strategically, and resolving the complaints en bloc
(for example by asking trusts and strategic health authorities to agree NHS CC for these meeting high band
RNCC or to reassess patients for NHS CC using your new advice and guidance).
I appreciate that you may need to take your own legal advice on this matter, but given the number of
complaints that we are holding where potential maladministration rests on this issue, I should be grateful
for an early response. I am happy to meet you and your colleagues to discuss this issue if you think that
would be helpful. However, that should be with a view to moving swiftly to a statement from you giving
your interpretation, clarification and guidance on practice on this issue.
Further supplementary memorandum by OYce of Parliamentary and Health Service Ombudsman (CC 23C)
In her evidence to the Committee on 17 March 2005 Trish Longdon said that:
“we were misled as to the timeliness of reviews”.
I wrote subsequently, on 22 March 2005 to clarify the position by referring to the statement in our follow
up report:
“Although we had indicated in our report in February 2003 that ‘significant numbers of people and
sums of money are likely to be involved’, the large scale of applications for retrospective review and
restitution was unexpected. In view of this, the Department of Health extended the deadline for
dealing with them to 31 March 2004. We passed on to the Department of Health early concerns that
we had heard from NHS bodies about diYculties in meeting both the December and March deadlines.
However, on both occasions the Department assured us that their information showed the targets
would be met and we passed on these assurances to complainants, their representatives and Members
of Parliament. It became evident that the Department’s information was unreliable. It was very
disappointing that in September 2004 the Parliamentary Under Secretary of State for Community
reported that only 57% of the retrospective reviews (6,644 out of 11,655) had been completed by the
extended deadline of the end of March 2004. This prompted a flood of complaints to us—mainly from
frail, elderly people who were themselves carers or from their relatives—about delays in receiving a
decision.”
The Committee has asked whether assurances were given by Ministers or oYcials.
Specifically:
— Sir Nigel Crisp wrote to me in April 2003 to say that the Department hoped that all current cases
would have been resolved by the end of December 2003 and that this deadline might be subject to
revision depending on the volume of work revealed.
— Following further correspondence Sir Nigel wrote to me again in July 2003, saying that the
timetable was being kept under review and that, if there were any changes to the timetable, he
would let me know.
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— However, it was not until December 2003 that Sir Nigel wrote to me again, following a meeting
of our respective oYcials, to say that the Department acknowledged that in some places it would
not be possible to meet the deadline and the Department had therefore agreed to extend it to
March 2004.
The statement in my follow up report, quoted above, therefore, best expresses our concerns on this issue.
April 2005
APPENDIX 1
Memorandum by Mr Paul Overton (CC 01)
A national set of criteria and operational guidance is, I believe, essential. I have developed a degree of
expertise in this matter, having helped establish and been a member of joint PCT/SSD CHC funding panels
in this authority and previously (Croydon).
What we currently have is, in eVect a post-code lottery which, should you read just two diVerent SHA
policies and guidance, would be instantly clear. For example, the provision of CHC funding and care
management to those with a terminal diagnosis is restricted to the last six weeks of life in the Avon,
Gloucester and Wiltshire SHA; South West London’s criteria oVers the same funding from 12 weeks before
the estimated date of death. Why the diVerence? How does one explain the lack of consistency to users,
relatives and carers?
There is no standard approach to assessment or decision-making, each SHA/PCT in eVect creating their
own assessment tools and interpretation of the criteria. I know that this causes practical diYculties for those
caring out assessments and decision-making in relation to those with complex health and social care needs.
I will leave you to imagine how in diYcult it is in many instances to explain the outcome of the CHC
determination users, their carers and their relatives.
What is needed in my view is a national set of guidance which is robust and as unequivocal as possible;
that clarity is given on the “middle way” of joint funded packages of care.
February 2005
APPENDIX 2
Memorandum by Southampton City Council (CC 03)
We welcome the opportunity to submit a brief memorandum to the Committee, based on experience
across client groups within Southampton.
1. The Ministerial Statement on 9 December 2004
1.1 We warmly welcome the commitment to the “development of a national consistent approach”
1.2 Organisational Growth and Complexity. Whilst the reduction in the number of SHAs has reduced the
sets of eligibility criteria, there has been a significant move in the reverse direction with the increase in Local
Authority Social Service Departments (following LGR) and the enormous increase in PCTs. Therefore, the
number of health and social services organisations involved in interpreting, negotiating and implementing
continuing care has increased and with it potential and actual inconsistencies: whilst there will be only one
set of criteria in any one SHA, the interpretation and implementation of those criteria will vary between the
diVerent PCTs and local authorities within that SHA.
1.3 Requirement for National Leadership. There is a need for stronger national leadership and guidance
than heretofore, not only to reduce the “post code lottery” for the patient, but also to reduce the significant
waste of resources in every local health and social services organisation trying to interpret and implement
the diYcult and complex process of this national policy.
1.4 Omission of Eligibility Criteria. We are concerned that the statement specifically refers only to
“assessment for fully funded NHS continuing care”. Whilst national guidance on assessment and process
is important, and welcome, practitioners and patients need much greater clarity on what criteria are used
in the assessments, ie there needs to be greater national direction and guidance on the criteria themselves
(see later).
1.5 Omission of Shared Care. The statement refers only to “fully funded NHS continuing care”
(commonly known as Category 1 care); however, criteria also exist for Category 2, “continuing health and
social care” and this Category plays a significant part in the implementation of continuing care. It is vital
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that any work nationally also incorporates Category 2, shared care, especially as agencies are encouraged
to adopt a holistic approach to patients and their needs, and a partnership/whole systems approach between
agencies.
2. What Further Developments are Required to Support the Implementation of a National
Framework
2.1 National Criteria. We strongly support the production of one national, standard set of criteria
applicable to all SHAs to replace the 28 currently in existence There should be enough commonality in the
existing SHA criteria to enable this to happen, accompanied by clear guidance and definition of terms
used etc.
2.2 National Guidance. As a minimum there must be a national lead to give greater clarity, guidance and
interpretation on the common terms and concepts used in the Department of Health and SHA criteria. This
needs to incorporate case law, ombudsman decisions etc.
2.3 Definitions. For example, there needs to be clear, national and consistent definitions/explanations of
the following terms: complexity, intensity, and unpredictability.
2.3 Boundaries between Health and Social Care. Many of the issues raised by continuing care are a result
of the shift in boundaries between health and social care and changes in eligibility thresholds; in particular
the expansion of general nursing tasks now carried out by carers, paid or unpaid. We need clear definitions/
clarification of the following: personal care; general (non registered) nursing care; registered nursing care.
The current Section 49 (Health and Social Care Act) definition of nursing care is insuYcient as practical
guidance. We need a clear definition/interpretation of “nursing” that diVerentiates between non-registered
nursing tasks and registered nursing role/tasks and the relationship between the two.
2.4 What is Health Need? At its simplest level there is confusion about what is a “health need”: is it a
need resulting from a health problem or is it only a need that requires the intervention of a qualified health
professional? The implications of interpreting these in the diVerent ways are significant.
2.5 Clarification of Terms. There needs to be national clarification of what is meant by the terms “regular”
and “supervision” commonly used in the criteria.
2.6 RNCC. There needs to be greater clarity about the RNCC in relation to continuing care applicability
and the role of the Registered Nurse in the Nursing Homes as a health professional in relation to, for
example, “supervision” as used in the criteria.
2.7 Shared Care. A significant element of continuing care involves assessment and consideration for
Category 2, joint health and social care packages under the continuing care criteria. This encourages a
holistic approach for the patient and a partnership/whole systems approach between health and local
authorities. The promotion nationally of a framework to encourage this approach, including pooled
budgets, would assist in more cost eVective, joint working, and fewer disputes between agencies.
2.8 DiVerent Care Groups. There needs to be more recognition of the diVerent needs of the various care
groups: for example, in mental health, learning disability and children’s services. There has been a positive
move from a health model of predominantly residential care to a domiciliary social care model; from care
provided by health professionals to care provided by staV with a social care background and qualifications.
Resources have not suYciently followed the change in responsibilities. Criteria are biased towards physical
needs and do not take suYcient account of mental health problems and behavioural diYculties, which are
likely to be of more significance in these care groups.
2.9 In addition, there is a significantly increased expectation that tasks which were traditionally
undertaken by health staV will be undertaken by family carers, or, in their absence or inability, social
care staV.
2.10 Assessment tools and processes. Within the local SHA we have worked together on joint assessment
toolkits to aid decision-making. Overall the experience of these is positive and they are seen as essential in
order to ensure some consistency, objectivity and equity for patients and practitioners alike. However, even
across our one SHA, there is a significant variation on how, even whether, they are used. It would be very
helpful to have a national assessment tool and guidance on process. Throughout the country there is
probably enough material on assessment already which could be brought together into national assessment
templates for each care group. If single assessment tools are not seen to be desirable, or possible, national
guidance is needed on minimum standards/content of the assessment tools. These developments are
necessary to aid transparency, consistency, and help avoid legal challenge
2.11 Key issues locally for the use of toolkits seem to be whether tasks that derive from health needs, are
the responsibility of the NHS. If a toolkit assesses a client’s needs holistically and, as a result, proportions
health, social care, and educational need, it is unclear whether agencies can contribute to tasks undertaken
by another agency’s professionals.
2.12 Training. There is an overwhelming case for more training of staV. This is a priority even under the
present regime of continuing care; it will be of even greater importance if the hoped for developments take
place. Such training should be carried out jointly with health and social care staV and would benefit from
national guidance and funding to support it.
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3. Children with Complex Needs
3.1 Much of the agenda for continuing care has been driven by, and focussed on funding issues for
patients, in particular means testing and charging for social care services, versus free health care. By and
large these drivers have not applied to children’s needs and services although children are encompassed
within the continuing care criteria. Given this, we would specifically like to comment on children with
complex needs (although some of these comments below are equally applicable to other care groups,
particularly learning disability).
3.2 Children’s needs and services have been neglected in the debate about continuing care.
3.3 Although patient/client means testing is largely irrelevant in children’s services, the issues of interagency dispute, interpretation of terms etc are just as crucial. Therefore, the framework must encourage and
support joint agency working.
3.4 Specifically, the place of Category 2 joint health and social care, with the addition of education, is
even more important, resting as it does on the objective of a “whole child” approach, and the need and desire
of most families to care for their children, however complex their needs, within the family setting.
3.5 The shift of boundaries from health to social care has been just as significant particularly given the
move from a health to social care model; from health qualified staV to carers, paid or otherwise, qualified
or not, family members or foster carers. These changes have not been accompanied by appropriate
funding changes.
3.6 The desirable objective (and achievement) of supporting children with complex needs at home
(avoiding residential care) is often dependent on parental capacity and willingness to undertake nonregistered and intrusive nursing ie health tasks.
3.7 There is a just as great a need to clarify what is a “health need”; what is “nursing”; what is “regular”
and what does “supervision” mean in practice.
3.8 There is a need for joint training as well as some means of validating the training undertaken.
3.9 The need for information sharing between agencies is paramount and requires the framework to
support this: the children’s common assessment framework must underpin and link to any continuing care
assessment tool.
3.10 A major issue relates to the transition of young people from children’s to adult continuing care
resources and processes, where diVerent considerations and eligibility criteria may apply: this is particularly
notable in the area of “vulnerable adults” where very limited service provision may be available.
Developments should recognise how these issues impact on the expectations of both young people and
their parents.
4. Summary and Conclusions
— Whilst resources and infrastructures may vary across the country, a national health service ensures
expectations of national standards of social care and continuing care. A far clearer national lead
is paramount.
— The developments outlined above would aid transparency, fairness and equity for patients.
— All developments and proposals must conduce to the promotion of co-operation and joint working
between health and social care agencies, and reduce diYculties between the agencies, which are
aggravated by funding pressures.
— Whilst the total available resources may not increase if the above developments take place,
improved co-operation will lead to more eYcient use of the current resources of the agencies.
February 2005
APPENDIX 3
Memorandum by the Progressive Supranuclear Palsy [PSP-Europe] Association (CC 06)
1. The Progressive Supranuclear Palsy [PSP-Europe] Association was established in April 1994. The
three main objectives of the PSP Association are to:
— promote and sponsor research worldwide into the cause, eVective treatment and eventual cure
of PSP;
— provide information and support for PSP aZicted families across Europe; and
— engender awareness, particularly amongst relevant medical professionals, of PSP and of the
Association, mainly within the UK.
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2. PSP is a little known neurodegenerative disease, involving the progressive death of neurons (nerve
endings) in the basal ganglia and brain stem, just above the nuclei—hence supranuclear. The cause is not
known and there is, as yet, no eVective treatment and no known cure. PSP aVects progressively a person’s
vision, balance, mobility, speech and ability to swallow. It can also cause personality changes, incontinence
and behavioural problems. Average life expectancy from onset is some seven years, the last two of which
are often spent wheelchair or bed-bound, tube fed, on 24 hour care, unable to communicate with the world
around, although with intellect largely intact. It mainly aVects those aged over 50, but PSP patients still in
their 30s have joined the PSP Association.
3. Leading neurologists estimate that there could be up to 10,000 cases of PSP in the UK today. However,
correct diagnosis, especially in the early stages of the condition, is diYcult and until recently many health
professionals were unaware of the disease. Misdiagnosis and non-diagnosis is still common. PSP is at least
as nasty as and recent research confirms at least as common, in the UK, as its far better known “cousin”
Motor Neurone Disease. It is the disease from which the British born actor and comedian Dudley Moore
suVered.
4. At some stage during the progression of the disease, and usually by the time a person is admitted to a
care home, he or she will have become helpless. They will have to be put to bed and lifted from the bed,
perhaps into a wheelchair, dressed, fed, toileted, bathed, turned regularly in bed and wheelchair to avoid
sores and discomfort. As various bodily functions close down, complex and seemingly random symptoms
will appear unpredictably. These often need to be dealt with by a NHS multi-disciplinary team informed by,
and often under the guidance of, neurological expertise. Since there is no treatment and no cure for this
disease, the requirement is for informed palliative care in its later stages.
5. The PSP Association has been increasingly concerned about Continuing Care criteria and their
operation over recent years. We have received a large number of requests for help with understanding the
situation with regard to NHS Continuing Care. In addition our members have reported, on a number of
occasions, funding decisions that appeared unfair and inexplicable given the nature of PSP and the needs
of people with the condition (see annex for two anonymised case studies). It is quite a common experience
that funding is eventually agreed after relatives have sought an appeal and argued their case.
6. A particular problem for people with PSP and their families is the rapid deterioration in physical health
that the condition usually causes. Decisions on funding for continuing care need to be made speedily and
without the bureaucracy of appeals systems and reviews. Relatives are often left trying to sort out the case
even after he person with PSP has died.
7. The PSP Association would like to see the following questions addressed by the Committee’s Inquiry
in relation to the Minister’s statement on 9 December 2004:
(a) How will the new proposed continuing care framework ensure that decisions can be made speedily?
(b) How can the Minister ensure that consistent criteria can be APPLIED consistently across the
country?
(c) What plans are there to communicate clearly to people involved in seeking continuing care funding
what the criteria are and how they are applied?
(d) What is the timescale for establishing the new framework?
February 2005
Annex
ILLUSTRATIVE CASE STUDY OF WOMAN WITH PSP WHO HAS NOT YET BEEN
ACCEPTED FOR CONTINUING CARE FUNDING
1. About six years ago, my wife began to experience a loss of balance and had several serious falls, two
of which led her into hospital. She was otherwise healthy and young for her age, with no significant agerelated problems. It took about two years to get a diagnosis of PSP. By then, she used a wheelchair but could
walk short distances with my support. Generally, I carried her from room to room. I had to turn her
regularly at night and she developed a disease-associated bladder problem, so we rarely had more than three
hours continuous sleep in over two years. The muscles controlling her eye movement failed; she was unable
to scan and thus unable to read. She sometimes became confused, forgetful, irritable, depressed or
agitated—all typical symptoms of the disease.
2. Towards the end of 2002 she suVered a disease-related event which led her into our local General
Hospital and then two more hospitals. After three months she came home, but the NHS insisted that she
was their responsibility and would release her into my care only when they were satisfied that an adequate
care package was in place. By then, I had developed a spinal problem as a result of carrying her and, because
I could no longer lift her, after a few weeks she had to go into a nursing home.
3. Her NHS neurological consultant said, about 14 months ago, that he doubted she would be alive in
two years and not at all surprised if she were gone within one year. Her condition has deteriorated
dramatically recently. She is skeletal thin and has gone from a ladies’ dress size 16 to a Size 8–10, decreasing.
She is totally helpless and unable to do anything for herself. She has to be put to bed and lifted from bed
into a wheelchair, dressed, fed, toileted, bed-bathed and have her nose blown when necessary. Because she
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cannot move from one buttock to the other unaided, she has to be turned regularly in bed and wheelchair.
Although her intellect remains active and intelligent, she can neither read nor operate a radio or television
set. She cannot see or speak very well and finds it diYcult to complete a sentence.
4. When she was first diagnosed, her NHS neurological consultant told me that there were no drugs that
would save her or ameliorate her condition. He said that her treatment would be palliative and reactive.
That is to say, the treatment would be managed to ease her discomfort and shield her from unavoidable
harm. Since the progress of the disease is unpredictable and complex, symptoms of further functional failure
would be treated as they arose by NHS multi-disciplinary specialists. That is what has since happened.
5. When not in bed, she is always in a wheelchair. She must be correctly positioned in the chair and
repositioned frequently to avoid sores and discomfort. The chairs are produced by the local NHS
Wheelchair Service; their specialists brief the care staV at the Home on the precise and essential procedures
for positioning and restraining her.
6. The muscles in her throat are failing so she has progressive diYculty in swallowing and there is a danger
of choking. This will probably soon lead to peg-feeding. She is hand fed at present; solids are cut up, liquids
are thickened and fed through a straw. This deterioration in swallowing is monitored regularly by the NHS
Speech Therapist from a local clinic, who advises staV at the Home on the correct food and drink and how
it is to be given.
7. She developed a severe dermatological problem and was referred by her NHS neurological consultant
to an NHS dermatology consultant at a local hospital. That lady prescribed certain medical and
moisturising creams and unguents which are administered by the care staV.
8. To deal with her agitation, depression, mood swings, and the tremors caused by the palsy, her NHS
neurological consultant recommended certain sedative drugs which were then prescribed by her NHS GP.
9. The local NHS Incontinence Unit treated her bladder problem.
10. She developed Type 2 Diabetes, which was treated initially by the local Diabetic Clinic and is now
controlled by diet on the advice of her NHS GP.
11. She suVers progressive numbness and loss of use in her left arm, an eVect which is moving into her
left leg and will eventually involve both arms and legs. It is a typical symptom of the Cortico Basal
Degeneration (CBD) variety of the PSP from which she suVers. She has, from the beginning, been treated
by NHS physiotherapists, both hospital and practice, and is now visited regularly by the NHS Community
Physiotherapist from a local health centre.
12. As her eye problems developed, she was referred to an NHS consultant ophthalmologist.
13. My wife’s primary need is a health need. She is in a nursing home because she has a disease. Her
treatment needs are medical and palliative. She has virtually no social or cosmetic needs. Her
accommodation needs are trivial: a small room and a bed and a little food, the cost of which could probably
be covered by her State Pension.
NOTES ON A WOMAN’S ACCOUNT OF HER HUSBAND’S CASE (AS REPORTED)
TO PSP ASSOCIATION)
14. In 2000 her husband, then aged 72, was diagnosed with Parkinson’s disease (PD). In 2003, after many
often horrific falls, usually backwards and with other PSP type symptoms, her husband took an overdose
to commit suicide as he had had enough. He was admitted as a PD patient to a local hospital and remained
there for nine months. His wife wanted to nurse him at home, but Social Services, she said, were unhelpful
and pressured her into accepting that he should be transferred into a Care Home.
15. He suVered there, because his symptoms (typical of PSP); rigidity, staring eyes, falls, diYculty in
swallowing etc were not symptoms with which they were familiar. His condition worsened. He did not want
to be tube fed. His wife took him home.
16. A short while later, when he had recovered a bit, he cut his wrists in another attempt to “end it” and
was then readmitted to the hospital. He was seen by the Registrar there who suspected he had PSP and not
PD. He was then taken to a hospital with more neurological expertise and examined by a neurologist, who
put on his notes that he also felt the man had PSP; but referred him to an eminent neurologist (who is about
to retire) to make a deciding diagnosis (not yet made).
17. Meanwhile, the original hospital assessed him and turned him down for Continuing Care and wishes
to discharge him back home or into care. The wife is appealing against this decision, because she felt the
criteria were not interpreted fairly (they still have not confirmed that he has PSP, although all the evidence
points to this). The fact that the hospital is some one million pounds overspent, makes her feel that he will
be rejected on appeal, although there are the strongest grounds of complex neurological need.
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APPENDIX 4
Memorandum by the NHFA (CC 08)
The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
“The Parliamentary Under-Secretary of State for Health (Dr Stephen Ladyman): Today I am
commissioning the development of a national consistent approach to assessment for fully funded national
health service continuing care and announce the publication of the independent report on continuing care
entitled “Continuing Health Care: Review, Revision and Restitution”. I would like to acknowledge the
work during 2003–04 carried out in bringing together more than 95 health authority criteria into the legally
compliant 28 strategic health authority (SHA) criteria which exist today. Having achieved this objective and
significantly improved arrangements for assessing new cases, and having made good progress with the
retrospective review of cases where people have been wrongly denied funding in the past, it is now practical
to move forward and improve the system further. The Department will work with the SHAs to build on all
the good work done so far. Learning from good practice, we will produce a national approach to continuing
care to improve consistency and ease of understanding. We want to help to achieve these aims. This does
not constitute a break from past practice. As I have said before all the current criteria are fair and legal. It
will however make the process easier to understand for practitioners and patients alike.”
How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities
in Reviewing Criteria for NHS Continuing Care and Developing Policies
— The assessment process for determination of eligibility to NHS continuing care needs to be clearly
defined to identify responsibility for what is considered to be the “grey” areas between health and
social care—see table below.
(iv)
Complex
Health &
Social
Care
(v)
Continuing
Complex
Health Care
(100%NHS)
Where daily living tasks
require more than the
assistance of one carer.
e.g. one carer with simple
training - one carer plus
equipment and training in
its use - more than one
carer.
need for level of care
supervision and monitoring
to prevent deterioration in
current condition (either
physical or emotional)
Care supervision and
monitoring which can be
delivered by lay person
who has acquired
expertise.
need for level of care
supervision and monitoring
to prevent risk to self and
others or to prevent
deterioration in
current condition.
Care, supervision and
monitoring by or under the
guidance of trained staff,
including qualified nursing
staff.
people who need specialist
health care that could be
provided outside a hospital
setting, to maintain
optimum level of
functioning and quality of
life.
Needs require more
specialised therapeutic or
medical care than those
covered in Groups (iv) or
(v)
Carers with a body of
knowledge in a relevant
specialised area or
specialised equipment or
therapy or a specialised
environment.
As in Group (iv) above plus
active [on call] clinical
supervision and review
from a consultant or GP.
Local
Authority
Own home,
Sheltered or
Extra care
Grey
Area
Residential
care or nursing
home.
Health
Authority
Own home,
Sheltered or
Extra care,
nursing home,
hospital.
Health
Authority
— For those resident in nursing homes the point at which they are assessed for their level of
Registered Nursing Care Contribution (RNCC) would also be an eVective time to identify
eligibility to continuing care funding. Lead nurses conducting these assessments should be trained
to identify such cases based on a uniform nationally adopted assessment process/tool.
— As health changes so do needs therefore regular reviews of assessments in a timely manner need
to be carried out as mandatory.
— Some cases retrospectively considered to be eligible to fully funded NHS care were previously
either banded as middle or high dependency in determining their RNCC. The definition of these
bands needs to be examined and redefined to separate them from each other and eligibility to
continuing care.
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— Self-funding care home residents must not be overlooked. NHFA care advice line is aware of cases
that once identified as self-funding are often left to their own devices in seeking care, particularly
on discharge from hospital. This can lead to inappropriate care being chosen either a nursing home
where if assessed residential care funding would only be oVered or into care homes that are more
expensive than local or health authorities would be prepared to pay for if the individuals resources
fell below the LA means test limit or they became eligible for continuing care funding.
— Multi-disciplinary assessments to include qualified medical staV are essential to determine all
the patients care needs. Such initial assessments and regular reviews need to be mandatory.
— Patients and their families need to be made aware of the consequences of choosing
accommodation that may not be aVordable over the long-term and instructed on how to
address this issue at the outset.
Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients
Wrongly Denied NHS Funding for Their Long-term Care
— NHFA experience indicates that many cases reviewed were done so because of requests from their
families who were made aware of the possibility of continuing care funding through the media or
other sources. To be certain that all possible cases have been reviewed families or representatives
of all cases that may have been eligible since 1996 should be written to oVering guidance on how
to determine whether care received was primarily health care as opposed to social care and, how
to obtain a review if appropriate.
— Local authority funded residents should also be included. Although much of their care costs may
have been borne by the local authority many would have wrongly contributed their pensions/
welfare benefits which accruing over time would not be an insignificant financial loss.
— Once assessed as being entitled to NHS continuing care consideration needs to be given as to where
that care is delivered. Patients should be given the opportunity to top-up NHS funding to facilitate
a move to preferred accommodation.
— Many self-funding care home residents may already reside in accommodation which is more costly
than the NHS would normally pay for and a subsequent entitlement to NHS funding may require
a move to less expensive accommodation. Moving older people as this vulnerable stage of their
lives can be extremely detrimental to their health and well-being and, in some cases could cause
premature death.
What Further Developments are Required to Support the Implementation of a National
Framework
The introduction of a single assessment process/tool based on national criteria would assist in removing
the existing postcode lottery to continuing care funding. Training programmes of assessors should be
determined nationally and adopted by all SHAs.
NHFA provides advice and information on obtaining and paying for care. Combining advice to illustrate the
aVordability of chosen care together with the many other complex issues older people and their families should
consider including local authority charging procedures, health authority responsibilities, DWP benefits and
legal matters. The NHFA aims to enable older people receive and choose appropriate care according to their
personal circumstances whilst also preserving their independence, dignity and right of choice.
February 2005
APPENDIX 5
Memorandum by Enfield Disability Action (CC 10)
EDA is a charitable company limited by guarantee. It is run by and for people with physical disabilities,
sensory impairments, mental ill health, learning diYculties and life-threatening illnesses.
Synopsis of the Local Background to Continuing Care Criteria
New criteria were put to the local Health and Social Care Board in May 2003. The Voluntary Sector could
not agree them. It was unclear if Ms Coughlan would qualify for NHS care under the criteria. Requests for
public consultation were rejected on the basis there was no significant change in the criteria from previous
criteria (the original criteria.) The Board met in August 2003 and the issue was referred back to the SHA.
In summer 2004 criteria were issued for public consultation. These contained explicit references to the scale
of needs/disabilities test (the test). However, the consultation presentations showed public authorities were
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unaware of the significance of the test. The focus was on clinical input. The criteria (the final criteria) were
agreed by SHA Board in December 2004. The explicit references to the test were removed relying instead on
wording from the 2001 DoH guidance. The Ombudsman had already described that guidance as “opaque”.
The Written Ministerial Statement 9 December 2004
The statement suggests a smooth operational outcome culminating in increasing awareness and correct
application of criteria. This is diYcult to reconcile with the synopsis. The relevant public bodies were pressed
to move toward the post-Coughlan era. The approach to the original criteria is illustrative.The original
criteria apparently contained a serious error. They permitted funding on a percentage split basis eg a
package could be split 80%/20% health and social care respectively. In such a case the individual would not
qualify for continuing care and was charged for the social care element whereas the prime need was
obviously for health care. Requests for copies of the criteria (and the dates they were used) have been made
but no copies sent despite the fact the criteria are public documents.
“How the Changes Will Build on the Work Already Carried Out by SHAs. . . .”
The changes indicated are learning from good practice and the independent review to produce a national
approach that is consistent and easy to understand. Locally a quantum leap has to be made. The final criteria
borrow the language of the judgement but the mindset is pre-Coughlan, focusing on clinical input not the
continuity or intensity (the amount) of care needed. Individuals are still being assessed as ineligible for
continuing care who have a scale of needs at least equivalent to those of Ms Coughlan.
“Whether the Review of Past Funding Decisions has Succeeded. . . .”
It is doubtful if the review succeeded. If the mindset focuses on clinical input how could the implications
of Couglan inform the review? The result is the particularly low number of cases identified for
reimbursement, 14 out of 125 at July 2004.
“What Further Developments Are Required. . . .”
National criteria which are explicit regarding Couglan compliance must be established and
comprehensive training provided in making continuing care assessments. If local defective criteria persist
any training will be utterly useless and injustices endured by vulnerable people will continue and resources
wasted in resolving unnecessary conflicts. To complement the national framework the viability of direct
payments for individuals entitled to continuing care should be closely examined.
February 2005
APPENDIX 6
Memorandum by the Royal College of Physicians of Edinburgh (CC 11)
The Royal College of Physicians of Edinburgh is pleased to respond to the House of Commons Health
Committee’s “New Inquiry—NHS Continuing Care”. Comments have been received from Fellows in active
geriatric practice in England and so it should be noted that these comments relate only to continuing care
services for medically ill elderly patients.
The Written Ministerial Statement on NHS Continuing Care
The Ministerial Statement was brief and gave little indication of what further changes are intended in
continuing health care provision and funding. We agree that disparities in the funding and provision of NHS
continuing care remain throughout the country with diVerences between and within health authorities in
their application of criteria for NHS care. These criteria are often diYcult for professionals to understand
and apply, far less the general public. A national framework to improve consistency should be welcomed
but we note the diYculties described in the accompanying report “Continuing health care—review, revision
and restitution”. Particular attention should be paid to the findings that:
— Disparities in historical provision of “in-house” NHS care in diVerent authorities and the eVect
this has on the application of criteria for NHS or privately funded care.
— DiYculties in gaining agreement between health and social care partners.
— That central guidance was issued on the criteria for NHS care originally, but this led to the
development of many similar but diVerent criteria around the country.
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How the Changes Will Build on Work Already Undertaken
As noted above, no information has been given on what further changes are planned. The accompanying
report concludes that rationalisation of criteria for NHS continuing care has been achieved following on
from reorganisation of health authorities. It has, however, highlighted the diYculties inherent in this
process. We have to question, therefore, whether fresh guidance will be suYcient to ensure a suYcient and
equitable approach across the country. In addition to the consolidation of criteria, we would advise that:
— Further work be undertaken to avoid duplication of assessments by health and social work
departments.
— There should be further examination of the rather arbitrary boundaries between residential,
nursing and continuing health care to streamline the process of assessment and in particular
reassessment. The idea that funding of all care needs should be by a single social care/health body
should be reconsidered eg there are concerns that if current “health” spend is too low in a particular
area that significant funds will have to be found and there seems to be no mechanism for funding
to be diverted from local authority social work department budgets to health in this context. A
single budget would relieve these worries and provide a degree of ring fencing in both sectors’
budgets.
— We would also highlight that the present rate of health authorities’ support for nursing homes is
inadequate and that requirements for “top up” fees which disadvantage the weakest and poorest
are commonplace.
— Where NHS care is provided in the private sector rather than by NHS units, common standards
of care should apply.
— Assessments should be led by a specialist multidisciplinary team led by geriatricians. There are still
too many examples of patients being admitted to care without full assessment and identification
of remediable illness and other issues.
— Assessment periods are often relatively short, whereas recovery from illness in elderly patients is
frequently prolonged and characterised by relapse. There is a clear need to reassess patients and
have mechanisms for changing placements should patients’ conditions improve and no longer
require NHS funded care.
— The break up of historical NHS long stay services has fragmented and dispersed the service
amongst a number of providers in diVerent health care situations. Some patients are now placed
in relatively unsupervised areas of care and specialist services are thinly stretched. This results in
an increased burden on primary care and an increased risk of usage of acute services for
intercurrent illness previously managed in traditional long-term care settings.
Review of Past Funding Decisions
The report “Continuing health care, review, revision and restitution” has documented thoroughly many
of the pressures and diYculties of reviewing past funding decisions. We would echo the experience that the
articulate and the intelligent are more likely to obtain “free” care through their advocacy and those who are
most disadvantaged are least likely to benefit from the review system. There may well remain unidentified
cases as a result. Consideration should be given to improving advocacy for such patients. The priority
should, however, be to ensure that criteria are applied fairly in the future. The provision of free board and
lodging in the NHS care institutions remains an anomaly and we note that in Scotland where there has been
a more generous interpretation of free personal care the number of appeals has been much lower.
The appeal system is vastly complex and the plethora of NHS and social services authorities who are
involved in commissioning, providing and assessing patients going through the system seem to be designed
simply to complicate the process.
Although the review document highlights the local issues involved in the appeals process there is still no
national information on the proportional spend on health or social care in diVerent health authority areas.
Such information taken over large enough populations should help to identify rogue health authorities or
social work departments who have applied criteria either too strictly or in too lax a fashion.
What Further Developments Are Required?
We fully support the development of a national frame work which identifies best practice, raises standards
and reduces inconsistency and inequity, and which results in a fairer, simpler and more intelligible system.
We have alluded throughout our response to areas which we believe are key to this process:
— Historical and geographical variations in care provision inevitably exist and diversity should not
of itself be discouraged.
— Individual patient assessments are key and should be comprehensive and specialist led.
— Reassessments will be needed and must be sensitive to the care needs of the most vulnerable.
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— At a population level it should be possible to determine levels of spend on diVerent care groups
and target improvements appropriately.
— The “free” board and lodging in NHS provided care remains an anomaly. In Scotland a wider
definition of free personal care seems to have satisfied those who have resources and the level of
appeals against placements has been much lower.
— Unification of health and social budgets and ring fencing could also simplify the funding process
although there are clear institutional barriers to this.
— The debate about what constitutes health and social care should continue. It is ironic that the
diYculties which have arisen in recent years have been because of a move away from the
philosophy of “cradle to grave” NHS care. If for example patients are unable to feed themselves
because of chronic illness and require assistance (a social care need), and this assistance is not
given, the lack of nutrition quickly becomes a “symptom” and results in further medical illness.
Such symptoms may be just as relevant to the health of the individual as chest pain in ischaemic
heart disease and bony pain in advanced cancer. The provision of properly resourced expert free
care at the point of need should remain the ultimate goal of any civilised health care system.
February 2005
APPENDIX 7
Memorandum by Hampshire County Council (CC 12)
1. Hampshire County Council
We are the largest of the four local authorities within the geographical boundaries of the Hampshire and
Isle Of Wight Strategic Health Authority (SHA). Hampshire County Council has co-terminus geographical
areas with seven of the 10 Primary Care Trusts (PCTs) within the SHA.
2. Brief Local Historical Context
The SHA produced its latest NHS Continuing Care Eligibility Criteria in October 2002. Over the
following year, many practitioners reported (through operational management and the Council’s solicitors)
that they were not being successful in getting PCTs to accept responsibility for patients who, in the
practitioners view, clearly met the criteria for NHS Continuing Care. Additionally, our own solicitor’s legal
view was that by funding the care of such patients, the Local Authority was acting ultra vires in that it did
not have the statutory power to do fund people who had primarily health needs
2.1 For the past year, we have dedicated specific resources to the issue of NHS Continuing Care. This has
included the commissioning of legal advice from a barrister regarding the extent and nature local authority
responsibilities, the appointment of a Continuing Care Strategic Manager and the implementation of
Continuing Care training programme for staV.
2.2 Based upon this legal advice, we issued a Continuing Care Resource Pack for our staV. This pack is
attached as Annex A to this submission.1 The contents include; guidance for staV, legal advice with Q&A
section, process flowcharts, standard letters for making applications and appeals and details of Health
Ombudsman decisions.
2.3 Consistent themes have emerged in our experience of working with PCTs and these themes are also
borne out in the DoH “Continuing Health Care; Review, Revision and Restitution” paper and the latest
Health Ombudsman Report—both of which were issued in December 2004. These themes are:
— The lack of information for patients (none of the seven PCTs with which we work have yet
published a information leaflet on continuing care for patients or their families);
— delays in decision making;
— decision making not being transparent and fair;
— decision making processes that are not being made in accordance with the law and Health
Ombudsman decisions;
— a poor record of communication with patients and their families regarding continuing care;
— an inability to eVectively commission and contract services to meet needs of patients who meet
NHS Continuing Care criteria;
—
1
variable arrangements for the monitoring and reviewing of NHS continuing care patients.
Not printed.
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2.4 The importance of budget deficits in the whole of the local health economy cannot be emphasised
enough. All seven of the PCTs with which we work have projected overspends and are under severe pressure
to balance their budgets. This means that each of the PCTs are implementing savings plans. The PCT
community have identified Continuing Care as an area where savings can potentially be made. However,
these recovery targets are not based upon evidence of the needs of the population.
3. Specific Joint Work to Resolve Local Issues
We have initiated a series of meetings with the SHA, the seven PCTs, Hampshire County Council
solicitors and the PCT’s legal advisors (Bevan Brittan). These meetings have considered a range of issues
relating to local continuing care policy and practice. Good progress has been made and two joint legal
agreements have now been adopted. The first legal agreement is attached as Annex B.2 This agreement
covered the issues of assessments, discharge, placement, change of setting, terminal care, responsibility,
RNCC and assessment tools.
It is not yet possible to provide the Committee with Legal Agreement no 2 as it is in the final stage of
consultation.
4. Ministerial Statement of 9 December 2004
We acknowledge that “the development of a national consistent approach to assessment for fully funded
NHS Continuing Care” is long overdue and we concur with this as a priority area of work for the DoH to
undertake. We have already oVered to assist the DoH in any way that we can to progress this work.
4.1 We are concerned that that the statement only identifies a clear approach to “assessment”. The
current operational issues regarding Continuing Care go way beyond the single issue of assessment. We ask
that any new National Framework deals with all of the issues that we detail in this submission, especially
those that are listed in sections 5, 6 and 7 of this submission.
5. What Further Developments Are Required to Support The Implementation of a National
Framework?
5.1 A National Criteria
It is clear that diVerent processes and arrangements exist in diVerent SHAs. Such inconsistencies also
occur between PCTs within the same SHA. This has resulted in entitlement to and availability of Continuing
Care being dependent upon where you live. The adoption of national criteria will improve this
unsatisfactory situation.
5.2 Further clarity concerning “Responsible Commissioner”
Existing guidance (issued by the DoH in November 2003) is clearly not robust enough. We are spending
considerable time in trying to resolve Responsible Commissioner disputes between PCTs. This is
particularly problematic when the two PCTs involved are not within the same SHA. We have experienced
very long delays—in one case, in excess of two years—which can only result in distress to patients and their
families. Responsible Commissioner guidance needs to be clearer with a greater emphasis on the speedy
resolving of disputes between PCTs, in pursuit of the best interests of the patient.
5.3 Clarity of the significance of Health Ombudsman Decisions and Recommendations
The PCTs with which we work (and their legal representatives) do not accept that Health Ombudsman
decisions as precedent. Therefore, they do not agree with our view that where a patient has broadly similar
needs to those Ombudsman cases which have been identified as meeting the continuing care criteria, we
would expect similar outcomes. It would be very helpful if the New Framework made reference to past and
future Health Ombudsman decisions and the relevant weight of such decisions should have as a guide to
practice for both PCTs and Social Services Departments.
5.4 Clear distinction needs to be made between RNCC and Continuing Care
The introduction of RNCC bandings for NHS contributions to nursing home placements has merely
added to the confusion surrounding entitlement to NHS Continuing Care. Particularly where the
description of high band RNCC is very similar to the description of Continuing Care. The Ombudsman has
clearly stated in her December 2004 report that “some NHS bodies appear to regard entitlement for NHS
continuing care funding as simply a “top band” above the higher band of RNCC funding. This may mean
that they are not considering the totality of a patient’s healthcare needs before assessing eligibility for RNCC
2
Not printed.
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funding”. The national framework needs to ensure that Continuing Care is a distinctly separate issue to
RNCC and that each is a separate assessment. Furthermore, PCTs need to reflect this in their decision
making processes.
Our agreement with the PCTs makes this clear and emphasises that Continuing Care entitlement must be
looked at before an RNCC determination.
5.5 Definitions of Terms
We would welcome national guidance on the following terms so that joint understanding can be reached
between social care and health professionals involved in Continuing Care assessments; Complexity,
intensity, unpredictability, regular supervision, what constitutes a “member of the NHS multi-disciplinary
team”—does this include a social worker (as some MDTs do contain social workers) exists—does this
include a registered nurse in a care home?
5.6 Clarity about “nursing care”
Section 49 of the Health and Social care Act defines registered nursing. This is not helpful in practice, as
many nursing tasks are carried out by staV or family members who are not registered nurses. The Health
Ombudsman, in the Pointon case, stated that Mrs Pointon was providing her husband with a highly skilled
level of care which was equal to, if not superior than, that he would have received in an in patient ward.
Therefore, the Ombudsman found that the qualification of the person giving the care was not relevant but
it was the nature of the task which was important. Hence, there is a need for further clarification and
explanation of “nursing care” that goes beyond that detailed in section 49.
5.7 Clear definition of “Incidental and Ancillary”
If the above issue concerning the definition of nursing can be satisfactorily resolved and explained, we
then come to the need for identification of what might be an amount of such nursing care that is incidental
and ancillary to the accommodation provided (and therefore the responsibility of the Local Authority and/
or patient to fund). Such guidance would help to define the converse—the amount of nursing care that
exceeds being merely incidental and ancillary (and is therefore the responsibility of the NHS to fund).
Our experience in Hampshire is that there is very little recognition or understanding of this qualifying
category in Continuing Care decision making.
5.8 Dispute Resolution
We hope that any new framework will result in better joint understandings and joint working
arrangements between Health and Social care agencies. At present, dispute resolution procedures are very
unsatisfactory and unclear which means that a great deal of time and resources are used in dispute
resolution. This is not only not conducive to good joint working arrangements but will also can have very
distressing impact upon patients and their families. Disputes need to be resolved quickly, in the best interests
of the patient and in accordance with the law.
We are discussing with our PCTS and the SHA how we can improve our process, including the use of the
SHA Independent Review Panel as an adjudicator.
5.9 The need for recognition of the right of Patients with Learning Disabilities or Mental Health Problems to
have fully funded NHS Continuing Care
These patient groups are doubly disadvantaged in relation to patients that are either physically disabled
or are over 65. This is because of the recent history of these care groups, where we saw NHS in patient units
closed as patients were resettled into community accommodation. What we have witnessed over time, is that
tasks that were previously undertaken by Registered Nurses have been increasingly taken on by highly
skilled and experienced care staV or support workers. This point is inextricably linked to the above point
regarding what is nursing care.
The second reason for these client groups being disadvantaged is that none of the case law or Health
Ombudsman’s decisions relate to these client groups; therefore, no comparisons can be directly or
indirectly made.
The eVect of the combination of the two above factors creates real diYculties for patients, families and
practitioners in identifying where the threshold for NHS Continuing Care might lie.
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5.10 Reliable Assessment Tools
There is a clear need for national assessment tools to be developed and implemented in order to assist
those involved in Continuing Care assessments. Such national tools will minimise any potential for
variations between SHAs and will mean consistency for patients countrywide. Furthermore, they will assist
in providing evidence to demonstrate how decisions are arrived at (and will therefore be subject to scrutiny
and challenge). Such tools should be implemented with scope for review and improvement over time.
5.11 Joint Training
The need for joint training of social care staV, PCT staV and staV based in Hospital Trusts is demonstrably
clear. It is badly needed presently (and we have reached a local agreement to jointly undertake this from
April 2005) and is essential to the successful implementation of a national framework. Shared understanding
will lead to better joint working, fewer disputes and timely decisions being made in the best interests of
the patient.
6. Summary
Our experience over the past two and a half years in attempting to implement the SHA Eligibility Criteria
has highlighted a number of shortcomings with the present arrangements. We have welcomed the two
reports that were issued in December by the DoH and the Health Ombudsman, as they confirm that many
of the issues and problems we are experiencing in Hampshire are indeed widespread and require a
national solution.
7. Recommendations
We recommend that the Health Select Committee seriously consider the points we have raised in our
submission. We ask that the Committee use its influence to finally resolve an area of policy that has been at
issue since the inception of the NHS in 1948.
We ask that the Committee support the need for a national criteria that is clear, consistent, fair and
transparent and is patient centred.
This can only happen if clear guidance and leadership emerges to deal with the following issues:
— National Criteria
That are clear, consistent, fair and are open to challenge. Such guidance will need to include the
continuing care thresholds for patients who have a learning disability and for those patients who
have a mental health problem.
Any terms and phrases used in such national criteria would need to have clear guidance notes
regarding the definitions of such terms.
Similarly, satisfactory clarity must be given about the nature of “nursing care”.
— Joint Training
So that Continuing Care assessment are based upon common understanding between Health and
Social Care professionals. This will and promote better joint working practices.
— Reliable Assessment Tools
Such tools are essential to ensure transparency, fairness and clarity regarding decision making.
February 2005
APPENDIX 8
Memorandum by BUPA (CC 13)
Summary
BUPA welcomes the Committee’s Inquiry into NHS continuing care and broadly advocates a national
framework for NHS continuing care. We recommend that rather than develop a new tool for assessing
continuing care the NHS adopts the internationally used and well-established Minimum Data Set. We also
suggest that the various assessments should be consolidated into a single assessment. In addition, we
propose that a single assessment be repeated in a structured manner for those eligible and ineligible at time
of entry into care to ensure those with progressive conditions do not get forgotten.
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Introduction
BUPA is a global health and care organisation with eight million members and over 40,000 employees in
192 countries. We are a provident association, which means that any profit we make is re-invested in better
health and care services. BUPA’s interests include health insurance, hospitals, nursing and care homes,
health assessments, occupational health and recruitment services.
BUPA Care Services is the UK’s leading care home operator caring for over 16,000 residents in 258 care
homes. The NHS or local authorities fund more than 70% of BUPA’s residents. We have around 5,000
dementia care beds in our care homes across the UK. A recent census of our care homes revealed that over
90% of BUPA’s care home residents were admitted as a result of defined medical conditions and associated
disabilities and over 70% of admissions were related to dementia, stroke or Parkinson’s disease.
BUPA is submitting this evidence on behalf of BUPA Care Services.
1. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
BUPA broadly welcomes Dr Stephen Ladyman’s announcement of the development of a national
approach to continuing care. BUPA has long advocated a national consistent approach to assessment for
NHS continuing care. This is due to our concerns about the inconsistent and unsystematic way the current
assessment criteria are used, which often mean many older people are unfairly denied their care entitlement.
2. How the Changes will Build on the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
From BUPA’s experience Strategic Health Authorities do not proactively seek eligible cases and do not
seem to routinely question whether individuals are eligible for fully funded care. In addition, decisions about
eligibility are not currently publicly reported.
BUPA advocates a consistent national approach to assessment. Rather than delay implementation
further through the development of a new assessment tool, BUPA would support the use of the
internationally used and well proven Minimum Data Set (MDS).
At the same time as implementing a consistent national approach to assessment BUPA recommends a
consolidation of the assessments for eligibility for NHS continuing care and NHS continuing support in the
form of the “Registered Nursing Care Contribution to Care” (RNCC). The current system is both complex
and confusing and so a single assessment would highlight to individuals their responsibilities for funding
personal care.
A clearer and consistent assessment process will not only benefit patients but also health care regulators
by enabling them to determine the appropriateness of care being commissioned.
3. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for Their Long-term Care
Despite the Ombudsman’s involvement, there are cases where individuals have been denied funding due
to their ineligibility at the time of entry into care but due to progressive diseases they may subsequently meet
the criteria. Planned reassessment of those who are ineligible for fully funded care at the point of entry is
rare. By comparison those who are eligible and are regularly reviewed to ensure they are still eligible.
Since chronic diseases like Alzheimer’s are progressive, some patients who do not meet the eligibility
criteria initially may do so later. BUPA therefore recommends that the single assessment should be repeated
in a structured manner. This would avoid eligible people failing to receive the help to which they are entitled.
4. What Further Developments are Required to Support the Implementation of a National
Framework?
BUPA encourages the Committee to support a statutory requirement for a standard single assessment
measurement for all types of care. A programme of staV training and support must accompany the
implementation of a national framework for continuing care. We also recommend that the process of
assessment for eligibility be monitored in a structured manner by a regulator.
February 2005
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APPENDIX 9
Memorandum by the NHS Confederation (CC 14)
Introduction
1. The NHS Confederation welcomes the inquiry as to the eVectiveness of the existing arrangements for
the review of continuing care decisions following the guidance given by the Department of Health in 2001
and following the report “Continuing Health Care: Review, revision and restitution”.
2. The NHS Confederation is a membership body that represents over 93% of all statutory NHS
organisations across the UK, including 90% of Primary Care Trusts (PCTs) and 100% of Strategic Health
Authorities (SHAs). Our role is to provide a voice for the management of the NHS and represent the
interests of NHS organisations. We are independent of the UK Government although, of course, we work
closely with the Department of Health and the devolved administrations.
3. Our evidence sets out our general views, based on feedback from a cross section of members in the
last month, on the current situation regarding the consistency of the continuing care review process. Where
appropriate, we have also included more specific comments on the questions asked.
Overview
4. The NHS Confederation urges the committee to consider our views in the light of the other policy
initiatives, chiefly those which move the emphasis of care from one of entitlement and institutionalisation
to one based on the promotion of patient choice, empowerment and independence.
5. The NHS Confederation also stresses that continuing health care requires a continuum of provision
and is not undertaken in isolation from social care, particularly where services are part of a “joint” package
with social services, independent providers and voluntary sector colleagues.
6. Whilst some packages are delivered at high cost out of the geographical area in which the client has
previously lived, there are equally complex cases provided in clients’ own homes by a range of partners.
7. The NHS Confederation believes that any national framework must enable clients along this entire
spectrum of continuing care to have a package of care which has been developed with their full participation
and for it to be put in place with full regard to their personal choices and preferences for its delivery.
The written ministerial statement on NHS continuing care issued by Dr Stephen Ladyman on 9 December 2004.
8. The Confederation welcomes the development of a national framework within which local assessment
and review systems can be co-ordinated to ensure consistency of approach and outcome for patients and
their carers.
9. We hope that our responses to questions three and four below will oVer suggested solutions to issues
raised in the report “Continuing Health Care: Review, revision and restitution” as areas where further work
is required to aid consistency, both of assessment and implementation.
How the changes will build on the work already undertaken by SHAs in reviewing criteria for NHS continuing
care and developing policies.
10. The NHS Confederation wishes to emphasise the range and quality of the work already done by
SHAs and PCTs in setting local criteria and systems which have enabled large numbers of continuing care
decisions to be reviewed within tight timescales. Informal feedback from members shows, however, that this
work is ongoing with a steady trickle of new review cases still being identified across England. We would
urge that the new framework continues to build on this work and the learning from it.
Whether the review of past funding decisions has succeeded in addressing the needs of patients wrongly denied
NHS funding for their long-term care.
11. Members, whom we have consulted in developing this evidence, have reported that the national
guidance was helpful in providing a framework.
What further developments are required to support the implementation of a national framework?
12. The NHS Confederation believes that any assessment must be linked to the Single Assessment
Process (SAP), developed locally between health and social care partners. Where patients are under 65 years
of age, we believe that the multi-disciplinary assessment aVorded by SAP is still the most pragmatic and
suitable assessment tool available. New assessment systems should not be necessary where this linkage is in
place, particularly where it is supported by eVective cross agency information systems.
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13. The responsibility for clients with continuing health care needs sits with the PCT with which the
individual is registered and is most likely to be the PCT in which the care is to be delivered. Social care
provision is the responsibility of the placing Local Authority and remains with them even where the client
is placed out of the area. There is the possibility, therefore, for confusion for clients and carers in their
navigation of the system, dealing potentially with organisations within two diVerent geographical locations
and with diVerent eligibility criteria, which the Confederation hopes will be addressed by the national
framework.
14. This also has meant that some of the benefits of joint working and wider partnerships between health
and social services colleagues have been more diYcult to realise.
15. Indeed for some PCTs there may be a perverse incentive for high cost cases to be placed away from
home. We urge that this anomaly is addressed in any further development of the existing framework.
16. Whilst the continuing care eligibility criteria has been primarily used for older people, in some areas,
revised criteria have been developed for use with people with mental health problems and a separate
document for use with people with learning disabilities.
17. In learning disabilities, where this has been used with young people coming through into adult
services, and for people ready for discharge from forensic in-patient services, it has increased dramatically
the number qualifying for 100% health funding. This is particularly important as the funding will need to
be for a lifetime of care and support.
18. It has already been suggested that diVerent criteria may be needed for patients with learning
disabilities. This issue must be addressed by the framework in order to ensure equal access and the
development of criteria which enable commissioning of packages which reflect individual client needs.
19. The NHS Confederation believes that any framework must address the present variability in
assessment through re-enforcing the need to produce a balance of clinical judgment and criteria-based,
multi-disciplinary assessment, in which the patient and main care givers are fully involved and which is of
high clinical quality, emphasising the delivery of care in appropriate settings based on clinical need.
20. This system, whilst recognising that flexibility is required to ensure that care is personalised, must also
be supported by a monitoring and audit process, potentially co-ordinated through the local Continuing Care
Panel and enabling consistency to be monitored locally and on a regular basis.
21. Such systematic audit processes will need to be supported by training of auditors and the continuing
professional education of assessing clinicians. The Confederation urges that this support process be
resourced as part of the framework development.
22. The NHS Confederation believes that, in this way, a robust assessment and monitoring system can
be put in place, based on national guidelines but enabling clinical judgment to be used to ensure that
packages of care reflect local circumstances. This should also improve contestability of decisions and add
national consistency of application of the framework.
February 2005
APPENDIX 10
Memorandum by Association for Children with Life-threatening or Terminal Conditions
and their Families (ACT) (CC 16)
1. ACT believes that the announcement of the development of a national framework for NHS continuing
care could potentially overcome the inconsistencies in service provision and inequities of services received
by children with life threatening/life limiting conditions and their families.
2. The Statement by Dr Stephen Ladyman, Parliamentary Under-Secretary of State for Health does not
indicate that children and young people’s needs will be considered within this work and although there is
potential for inclusion, this is not specifically stated. This suggests that children and young people will be
excluded from the inquiry.
3. ACT asks the Health Select Committee to ensure that the individuals involved in the development of
the national framework will include representatives from children’s and young people’s services.
4. ACT welcomes the introduction of the Children’s National Service Framework and is pleased that the
work includes a section on palliative care, but for equity of service provision there is a need for children’s
services to be considered alongside adult services not only in “stand-alone” documents. There still is no
consistent national overview or strategy on children’s palliative care services. The National Service
Framework for Children gives some direction to the development of children’s services, but the guidance is
very broad and many Primary Care Trusts and Strategic Health Authorities do not fully support the case
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for developing integrated children’s palliative care services. DiVerent agencies are often competing for the
small amount of funding that is available, which leads to a fragmentation of services. Children’s palliative
care has a relatively small influence within each Strategic Health Authority, partly due to the fact that the
numbers of children aVected are small. However the needs of these children and their families are complex
and resources allocated are often insuYcient.
5. Palliative care for children and young people with life-limiting conditions is an active and total
approach to care, embracing physical, emotional, social and spiritual elements. It focuses on quality of life
for the child and support for the family and includes the management of distressing symptoms, provision
of respite and care through death and bereavement. It is provided for children for whom curative treatment
is no longer the main focus of care and may extend over many years.
6. Short term breaks (respite) within the home and out of the home are essential components of a
palliative care package. Some families also need the support of a long-term respite facility. Many parents
prefer to care for their child within the family home and to do this they need a range of essential support.
There are a number of voluntary sector and NHS and Social Services agencies which provide support in the
home, but often the provision is insuYcient to meet needs. One major diYculty with respite provision is that
social services are unable to provide appropriate services when a child has complex medical or nursing needs
and so the usual avenues for support are often closed to families caring for a child with a life-limiting illness.
Many children with complex medical and nursing needs can receive funding from their PCT through
Continuing Care, but there is no national criteria for accessing this funding—an issue which needs to be
addressed. There needs to be a menu of options for respite, including children’s hospice services, and this
menu would be best provided through a partnership between health, social and education services and
voluntary agencies.
7. In general services for children with severe complex and life-limiting problems are very patchy. Services
for children require flexibility and the children and families should be assessed at regular intervals to ensure
that their changing needs are provided for.
8. ACT believes that all patients, irrespective of age, who receive palliative care should meet local criteria
for fully funded NHS continuing care.
9. This evidence is submitted on a corporate basis. ACT would be very pleased to give oral evidence if
required and would be able to supply a parent representative to give a “first hand” account of what it is like
to be in receipt of palliative care services. As the only organisation which can represent children, their
families and those working with them, ACT would also be happy to provide contact with a wide range of
professionals working in this demanding area if this would be useful to the committee.
February 2005
Notes
The Association for children with Life-threatening or terminal Conditions and their Families (ACT) is a
registered charity and was formed in 1993 as the first national organisation to represent and support all those
living or working with children with life-limiting illnesses and to promote the needs of all children1 with a
life-threatening or life-limiting condition. ACT has been at the forefront of developing children’s palliative
care and continues to champion the needs of children and families and support professionals and will
continue to work to fulfil this role for the foreseeable future. Although based in the UK, ACT continues to
seek the development of children’s palliative care internationally.
ACT’s mission is to influence, co-ordinate and promote the provision of the best possible care and support
for children and their families, through:
— promoting partnership between professionals and between families and professionals;
— expanding membership to enhance its representative voice;
— advocating for aVected children and families;
— supporting families with information;
— supporting professionals through information and education;
— promoting knowledge and awareness;
— providing a forum for the exchange and development of information between parents and
professionals.
ACT represents the children and young people aVected with a life threatening or life limiting condition,
their parents and families and the professionals involved in the care of the children, young people and
their families.
1
We have used the term “child” to mean any child or young person.
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APPENDIX 11
Memorandum by Solicitors for the Elderly (SFE) (CC 17)
SFE is a UK association of lawyers who specialise in acting for the older and disabled client, their family
and carers.
The need for involvement of many lawyers throughout England in the area of NHS Continuing Care and
its funding, is itself an indictment of the present system. If the eligibility criteria in place were fair and legal
and if the process undertaken to establish eligibility was clear, transparent and, above all, communicated
to those who need to understand, there would be little need for lawyers. Sadly we have not found this to be
the case.
The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
As an organisation, many of whose members have long sought the logic of a National framework, the
minister’s statement is very welcome. It follows years of confusion in this area and frustration and heartache
for many patients, their families and representatives. This confusion continues to the present and will only
be removed by a determined eVort on the part of the Government. We are very pleased to have an
opportunity to address the Health Committee in writing, and in person if required.
We take issue with the statement “all current criteria are fair and legal”. If it were correct then patients
with primary health needs, which are more than ancillary or incidental to their need for accommodation,
such as Pamela Coughlan would be able to obtain funding in any of the 28 Strategic Health Authorities
(which manifestly they would not), and the Health Service Ombudsman would not be swamped with
complaints.
How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities
in Reviewing Criteria for NHS Continuing Care and Developing Policies
Some SHAs have worked hard to produce what they believe to be fair criteria and work tools. In other
areas the guidance and directions from the Department of Health, (although we believe these to be
inherently weak), and the excellent reports of the Health Service Ombudsman, have been largely retained
by “the few” and not disseminated to “the many”.
The direction to the new Strategic Health Authorities (SHAs) to have one set of eligibility criteria
operating throughout their area did not necessarily produce a desirable result. For instance, in Shropshire
and StaVordshire, a careful process begun by the then Shropshire Primary Care Trust, in which they
consulted with all interested parties including care home providers and local lawyers, was brought to an
abrupt halt and unacceptably restrictive criteria were introduced which brought consternation to all who
had been involved in the earlier deliberations and have meant that thoughtful members of independent
review panels have been horrified by the decisions which they have been forced to make, refusing patients,
with primary health needs, the NHS Continuing Health care (CHC) funding to which they are clearly
entitled.
Providing National Criteria which are understandable and workable and which harmonise with registered
nursing care by a registered nurse is the only way forward.
Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients
Wrongly Denied NHS Funding for Their Long Term Care
The failings of some SHAs and PCTs revolve around a lack of awareness and understanding of the case
law, its application and how NHS Continuing Health care fits in with nursing care by a registered nurse.
SFE members are constantly being reminded of the lack of awareness of NHS (CHC) funding amongst
the “front rank” members of the medical and social care professions in hospital and in the community. Until
GPs, practice nurses, hospital doctors and nurses, social workers and all related staV receive information
about NHS CHC funding as an integral part of their training, the fact that, in England, if you are sick with
primary health care needs, you remain the responsibility of the NHS, remains a closely guarded “secret”
and it is sometimes hard to believe that this is not deliberate.
Some illustrations of the ongoing problems are as follows:
(i)
A hospital social worker tells Mr A, a 28 year old man, that his mother Mrs A, who has a brain
tumour, is terminally ill and now needs a place in a nursing home and will have to sell her house
to fund her care. “There may be another way, but Mr A will need to see a solicitor about it”.
(December 2003).
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(ii) A solicitor is approached by Mr B whose mother Mrs B is in hospital. Mr B thinks that her case
has been to the “panel” but does not understand what this means as no-one has explained it. There
is no written evidence of the panel’s decision and no advice about what review can be conducted
if requested. (October 2004).
(iii) An elderly patient, Miss C, moves from a residential to a nursing home because her nursing needs,
which are complex, have become primary. The social worker is asked by the solicitor/attorney
about NHS CHC funding. The social worker knows nothing about this and has not heard of the
Coughlan case. After involvement of her solicitor, Miss C, who was rather extraordinarily banded
in the medium band for “free” nursing care, is retrospectively given NHS CHC funding from the
time she entered the nursing home. No mention is made of the later stages of her time at the
residential home when her NEEDS changed. (November 2004).
(iv) Mr D, who has severe dementia, has been in an EMI nursing home for two years. He has been
consistently refused NHS CHC funding though he is easily the most “challenging” patient in the
home. Eventually an Independent Review panel decides he will have funding from the end of the
first year. His solicitor asks for the report from the panel and is told by the Director for
Commissioning at the PCT that this is not possible. In response to a further request he says that
the report is the property of the SHA and a written complaint must be made to the Chief Executive.
The report is eventually produced which is very damning of the PCT. (December 2004).
(v) Mrs E is terminally ill in hospital with bowel cancer. She is to receive a care package at home. The
social worker in the community undertakes a community care assessment and writes a Care Plan.
The patient’s husband, who himself has prostate cancer, is told that his wife’s case has been to the
“panel” and that she has been refused NHS (CHC) Funding. No reasons are given either verbally
or in writing and there has been no mention of a nursing assessment within the hospital. It is totally
unclear what information the panel has been given upon which they have made such a decision and
no indication has been given to Mr E of the possibility of complaint or review. (February 2005).
One of the recommendations of the Health Service Ombudsman was that SHAs and PCTs should attempt
to identify any patients in their area who may, wrongly, have been made to pay for their care, and to make
appropriate recompense to them or their estate.
This should have involved at least a two-fold approach. Firstly reviewing current patients in care homes
or receiving care packages at home, and secondly, with respect to patients who have died, going through
medical records and raising public awareness with publicity through the press and media.
Local review procedures. Any reviews conducted would inevitably be assessing patients’ needs against the
relevant local eligibility criteria. We believe that the criteria in many SHAs, are too restrictive and would,
if tested by the Courts, be found to be unlawful in the light of Government guidance, the Coughlan decision
and the Health Service Ombudsman’s recommendations. Logically therefore, many patients with primary
health needs who were reviewed have been refused. SHAs have taken inconsistent approaches to the
review process.
Restitution to the estates of those patients who have been denied NHS Continuing Health Care Funding
would inevitably be inadequate unless there was rigorous publicity, arguably at both local and national level.
We are not aware of any such robust publicity campaign either from central government or local health
bodies and, logically, this must mean that there are still estates which have been significantly smaller than
they should have been because family members and executors of deceased patients remain ignorant, along
with most of the members of the general public, of the entitlement for NHS CHC Funding.
What further developments are required to support the implementation of a national framework?
It is vital that in developing new national criteria, community care lawyers with expertise in health and
social care, must have an input to ensure that future patients are assessed against truly fair criteria. It makes
no sense to produce criteria for England, which are open to immediate challenge. Though the 28 SHAs had
legal advice, we believe that there was no monitoring to see how “good” such advice was, or, where such
advice was given, whether it was followed. Indeed in one case we believe it definitely was not.
National Criteria cannot stand alone and must be supported by:
— A set of accredited assessment tools and good practice guidance to support the criteria so that each
SHA and PCT is not required to “reinvent the wheel”. This should include clear case studies
covering some of the major illnesses such as dementia, motor neurone disease and multiple
sclerosis.
— Publicity to the public generally.
— Training for all health and social care professionals, both in hospital and in the community, to
“demystify” this area and bring it into the acceptable remit of the NHS and ensure that the decision
maker is accountable for the decision with clear reasons being provided in writing.
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— Changes to the Guidance on registered nursing care by a registered nurse, LAC (2001) 26, so there
is no similar terminology used without a clear and meaningful definition. Presently under such
guidance a person in the high band because of the definition should, to all intents and purposes,
have primary health needs and should be fully funded by the NHS.
— Changes to the case studies in the Nursing Care Handbook as the cases indicate that some people
who should qualify for full NHS funding, are only to receive the high band.
— Clarification of LAC (2003) 7 at paragraph 20, which supports the idea that there is another level
of care between the higher band and being entitled to full NHS funded care. It states “In some
cases, the assessment and RNCC process will identify individuals who have exceptional long-term
needs for nursing care, both in amount and type, yet which do not meet local criteria for continuing
health care. In these cases, the NHS has responsibility to arrange or fund the services the individual
needs and should make arrangements on a case-by-case basis”
The development of national criteria must clearly explain and define:
— The case law.
— What is ancillary and incidental.
— What is a primary health care need.
— What is specialist health care equipment.
— When someone is terminally ill and likely to die in the near future.
— What is complex, intense, unpredictable, and unstable so that it is distinguished clearly from
definitions of nursing care provided by a registered nurse.
We would recommend that the Health Committee consider some actual cases and see whether they would
be able to determine if the person is:
(i) Eligible for NHS CHC Funding, or
(ii) Ineligible for NHS CHC Funding, but given the high band contribution, or
(iii) Ineligible for NHS CHC Funding, but be considered, because of their stability and the
predictability of their needs, to qualify only for the medium band a week.
At the present time it is an absolute lottery as to how this is determined and SFE members would welcome
a rigorous review of guidance in addition to all the other matters raised.
February 2005
APPENDIX 12
Memorandum by Mr Andrew Shaw (CC 18)
Over the last 14 months, I have acted as patient’s representative for my Mother, who was in a Cambridge
Hospital for six months, after suVering a stroke at the beginning of last year (2004).
When my Mother was being considered for discharge from hospital (May 2004), I applied, on her behalf,
for NHS fully funded continuing health care (NHS CHC). Ten months later, my Mother’s case is still being
considered, and is now with an Independent Review Panel.
Our request for NHS CHC for my Mother has so far generated a large dossier of notes and
correspondence, all of which have given me much insight into the workings of the NHS on the subject of
Continuing Health Care.
Thus, I read with great interest the Ministerial Statement on NHS continuing health care by Dr Stephen
Ladyman, issued on 9 December 2004, and I oVer the following comments based on my experiences:
— It is clear that many health care professionals are unaware of the DoH guidelines and legislation
under the Delayed Discharges (Continuing Care) Directions 2004.
— There is little understanding (by NHS health care professionals) of what constitutes a proper single
point multi-discipline continuing care assessment, often confusing this with a Registered Nurse
Care Contribution (RNCC) determination. (My Mother has yet to receive a proper continuing
care assessment, despite several requests).
— Although all SHAs’ eligibility criteria should meet government (Department of Health) guidance
of 2001, and reflect the judgment made in the Coughlan case in 1999, it is clear that not all current
criteria are fair and legal. If they were, then any patient with similar needs to Pamela Coughlan,
would be receive NHS funded CHC from any of the 28 SHAs.
— It is not suYcient for the health spokesman to claim that all current criteria are fair and legal, (even
if they were). What is more important is the way in which the criteria are applied, ie they should
be used to determine whether the patient’s primary needs are for health care, and not used just to
determine the severity of the patient’s condition. It is clear from my experiences that the eligibility
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criteria of one SHA, at least, are applied too restrictively and inflexibly, and therefore, many
patients (my Mother included) whose primary needs are for health care are being needlessly and
unlawfully denied their right to NHS funding.
— Proper review procedures (following appeal) are not observed; for example, the appeal panel
chairman (in my Mother’s case) made an informal decision prior to and outside the panel’s
meeting, ie without discussion. On another occasion, the appeal panel didn’t carry out a review,
but produced their own version of a “continuing care assessment” based on inappropriate,
irrelevant and out of date data. Furthermore, the appeal procedures are not carried out within the
recommended time frame, ie14 days, but over many months.
— Overall, the conduct of many health professionals with regard to the processes for requesting and
obtaining NHS CHC suggests, at best, poor training and incompetence, and at worst, deliberate
procrastination and secretiveness.
— Whether a national framework will eliminate the long-standing problems of inconsistency and
inequity, and make the Government’s policy more intelligible and fairer remains to be seen.
— What is important is that there is a just and lawful approach to NHS CHC, as well as a consistent
and fair one.
February 2005
APPENDIX 13
Memorandum by The Continence Foundation (CC 20)
The Continence Foundation submitted detailed evidence to the Royal Commission on Long-Term Care
in 1998. However, since the current inquiry covers only those people who might be eligible for “continuing
care”, we do not think it appropriate to repeat our evidence about the impact of incontinence in the wider
population.
What we would wish to remind the committee that the commonest factor leading to admission to nursing
homes is incontinence5. Although we are not aware of any study showing that incontinence is most often
present in people who are being considered for continuing care, it would be logical to assume that this is the
case. We would, therefore, suggest that improving continence services both in the community and in care
homes would reduce the pressure for people to be classified as needing continuing care.
February 2005
APPENDIX 14
Memorandum by the Motor Neurone Disease Association (MND) (CC 22)
1. Few disorders are as devastating as MND. It progressively attacks the body, removing the ability to
walk, talk or feed oneself, but the intellect and senses usually remain intact. There are estimated to be around
5,000 people living with MND in the UK. Half the number of people with MND die within 14 months of
diagnosis.
2. Existing Department of Health Guidance on Continuing Care clearly indicates that MND is exactly
the type of complex, degenerative condition that the scheme is designed for, yet currently, many people with
MND are unable to obtain the continuing care to which they are entitled due to geographical variations in
the interpretation and application of the eligibility rules.
3. Even when an application for continuing care is successful, the time taken for the whole process is far
too long.
4. The Motor Neurone Disease (MND) Association strongly supports the Health Service Ombudsman’s
call for the establishment of clear, national, minimum eligibility criteria which are understandable to health
professionals and patients and carers alike.
5. There should also be a requirement for applications to be assessed to a strict timetable that takes into
account the needs of people with rapidly progressive diseases.
6. Education and training should be made available to staV handling Continuing Care applications to
ensure that they are familiar with the range of conditions they are likely to encounter.
5
Thom et al. (1997) “Medically recognised urinary incontinence and risks of hospitalisation, nursing home admission and
mortality.” Age and Ageing 26, pp 367–374.
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7. The Motor Neurone Disease (MND) Association believes that continuing care should be available to
everyone with MND needing it in a setting of their choice.
8. The MND Association is willing to give oral evidence to the inquiry.
2. Background
2.1 MND is a rapidly progressive neurological disease that kills three people every day in the UK. MND
aVects the motor neurones (nerve cells) in the brain and spinal cord. As the motor neurones die, the muscles
stop working.
2.2 It can aVect any adult at any time and leaves people unable to walk, talk, or feed themselves, but the
intellect and senses usually remain unaVected.
2.3 There are currently more than 5,000 people living with MND in the UK, with a prevalence of around
7 per 100,000.
2.4 The cause of MND is unknown and there is no known cure. On average it takes 16 to 18 months from
first symptoms to diagnose MND, and average life expectancy from diagnosis is just 14 months.
2.5 The MND Association is the only national organisation supporting people aVected by MND in
England, Wales and Northern Ireland. Our mission is to ensure that people with MND can secure highquality co-ordinated care and to promote research into causes and treatments.
2.6 The Association provides funding for 14 MND Care Centres across the UK providing co-ordinated
care for people with the disease. The Association has published Standards of Care for MND and is currently
developing guidelines for the management of the disease.
3. The Experiences of People with MND
3.1 The MND Association has a national network of Regional Care Advisers who provide advice and
support to people with MND in their area. The Association also operates a telephone helpline and webbased support service that provides information to people with MND and their carers. We have knowledge
of the experiences of people with MND in relation to Continuing Care from these sources. The overall
picture is one of inconsistency, confusion, and delay.
3.2 Inconsistency
3.2.1 Within Greater Manchester alone, there are 12 diVerent authorities, all interpreting the criteria and
implementation policy diVerently. The City of Manchester doesn’t give funding for care at all as they have
a “continuing care” establishment.
3.2.2 People with MND have told us that often a Social Services-funded care package is more flexible
than Continuing Care. Patients can also lose their existing care workers when care packages are transferred
from Social Services to Continuing Care. This adds an additional level of unnecessary distress to people
living with a terminal disease.
3.2.3 In some areas the qualifying threshold is so high it is just about impossible to achieve a high enough
score to obtain Continuing Care funding, even when dead.
3.3 Delays
3.3.1 Delays in assessing claims are not just common; they appear to be the norm. Time is something that
people with MND simply do not have. Half the people with MND die within 14 months of diagnosis. By
the time they are in a position to be entitled to Continuing Care, they may have only a few months to live.
They do not wish to spend the remaining time available to them battling with statutory service providers.
3.3.2 In one case, the Chief Executive of a PCT wrote to a person with MND informing him that he was
not ill enough to be entitled to Continuing Care. The man had already died in a nursing home.
3.4 Confusion
3.4.1 We know of one lady who died just after being refused Continuing Care on the grounds that she
didn’t have pressure sores or need daily visits from her GP. This was actually because of the quality of the
care she was receiving in a very good nursing home.
3.4.2 There is also evidence to suggest that those people handling Continuing Care applications do not
have a good enough understanding of the conditions they are likely to encounter. We are aware of cases
where a request for an assessment has been questioned because the person “only has MND”.
3.4.3 Our Regional Care Advisers have also experienced apathy among Health and Social Care
Professionals who are required to support applications. It appears that many are disillusioned with the
amount of work that needs to be done to submit an application when such high proportions are rejected.
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4. MND Association Recommendations for Action
4.1 The MND Association welcomes Stephen Ladyman’s Ministerial statement of 9 December 2004
announcing the development of a national framework for Continuing Care. We regard it as long overdue.
4.2 We wholly support the six key recommendations made by the Health Service Ombudsman for
England in her follow up report on NHS Funding for Long Term Care published on 16 December 2004.
4.3 However, we believe that a national framework for NHS Continuing Care will resolve the longstanding problems of inconsistency and inequality only if the rules are clearly drawn, are enforceable, and
a national monitoring scheme is in place to ensure compliance. If there is excessive room for local
interpretation of the guidelines, they will have failed.
4.4 There needs to be adequate funding in place to ensure that all those who meet the national criteria
receive the money to which they are entitled.
4.5 In addition to establishing consistent eligibility criteria, we believe that for a national framework to
succeed there must be a requirement for applications to be assessed to a strict timetable that takes into
account the needs of people with rapidly progressive diseases.
4.6 Education and training should be made available to staV handling Continuing Care applications to
ensure that they are familiar with the range of conditions they are likely to encounter. The MND Association
would be happy to contribute to this process in relation to Motor Neurone Disease.
February 2005
APPENDIX 15
Memorandum by the Parkinson’s Disease Society of the United Kingdom (CC 24)
1. The Parkinsons Disease Society
1.1 Parkinson’s Disease Society was established in 1969 and now has 30,000 members, 19,000 supporters
and over 300 local branches and support groups throughout the UK.
1.2 The Society provides support, advice and information to people with Parkinson’s, their carers,
families and friends, and information and professional development opportunities to health and social
services professionals involved in their management and care.
1.3 Each year the Society spends more than £2 million on funding research into the cause, cure and
prevention of Parkinson’s, and improvements in available treatments. The Society also develops models of
good practice in service provision, such as Parkinson’s Disease Nurse Specialists community support, and
campaigns for changes that will improve the lives of people aVected by Parkinson’s.
2. About Parkinson’s Disease
2.1 Parkinson’s Disease is a progressive neurological disorder. It aVects all activities of daily living
including talking, walking, communication, swallowing and writing. It is estimated that 120,000 people in
the UK have idiopathic Parkinson’s. That is one in 500 of the general population. Approximately 10,000
people are newly diagnosed with Parkinson’s each year in the UK.
2.2 Parkinson’s occurs as a result of a loss of cells that produce the neuro transmitter dopamine.
Dopamine is one the chemical messengers that we have in the brain which enables people to perform
coordinated movements. As yet it is not known why these cells die.
2.3 The three main symptoms are tremor, muscle rigidity and slowness of movement. However not
everyone will experience all three. Other symptoms include a lack of facial expression, diYculties with
balance, problems with an altered posture, tiredness, speech diYculties, pain and depression. Parkinson’s
aVects people from any ethnic background and any age group. Most people are diagnosed over the age of
60, however younger people can also develop Parkinson’s. It is estimated that one in 20 people are diagnosed
Parkinson’s under the age of 40.
3. Summary
3.1 The Parkinson’s Disease Society welcomes the inquiry into NHS continuing care as this area causes
considerable concern for people with Parkinson’s disease and their families and carers. Too often we receive
calls and letters outlining situations where through a lack of understanding about the impact of the disease
people have been denied NHS funding for their long-term care. Historically it was diYcult to understand
who was entitled to continuing NHS health care and the local eligibility criteria resulted in actual and
potential injustice to some people with Parkinson’s disease and their carers who had to pay for their own
care when the NHS should have paid for it. Applying for continuing care funding was on occasions a lottery.
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3.2 In December 2004 the Health Service Ombudsman published a report on the problems experienced
by disabled and elderly people in accessing NHS funding for long term care. This revealed persistent
problems at the heart of the continuing care framework and in the absence of clear and consistent national
criteria for continuing care funding resulted in confusion and inequity in the way decisions were made about
patients continuing health care needs.
4. Introduction
4.1 NHS continuing care is a package of care arranged and funded solely by the NHS for people who
need it because of a disability, accident or illness, to address both physical and mental health needs. To be
eligible for continuing NHS healthcare a person must have a complex medical condition that requires
regular care and support, and/or a very specialised nursing support.
4.2 For people with Parkinson’s disease, the quality and quantity of health and social care services is of
paramount importance. Parkinson’s disease is a chronic progressive neurological disease aVecting all
aspects of daily living. There is as yet no cure. Treatment is predominately pharmacological and as such is
associated with many misunderstood side eVects.
5. Dr Stephen Ladyman’s Ministerial Statement
5.1 The Society welcomes Dr. Stephen Ladyman’s statement on NHS continuing care. In the absence
of revised national guidelines, however, the diYculties in interpretation and confusion over the distinction
between continuing care and “free” nursing care remain.
5.2 The policy on who is entitled to continuing NHS healthcare is explained in local eligibility criteria.
If someone is assessed as needing continuing NHS healthcare they do not have to pay any of the costs,
instead the NHS pays the whole cost. The problem is that the decision on who qualifies for this funding
varies across the country resulting in a postcode lottery because each strategic health authority (SHA) has
its own local eligibility criteria.
5.3 The Parkinson’s Disease Society endorses the six recommendations from the Health Service
Ombudsman report in December 2004, in particular urging the establishment of clear, national minimum
eligibility criteria which are understood by health professionals, patients and carers alike, to end the
postcode lottery for people with long-term conditions.
6. Criteria for NHS Continuing Care and Developing SHA-wide policies
6.1 The fundamental problem with the NHS continuing framework as it currently stands is that in most
cases people in later stages of progressive neurological conditions are not recognised as entitled to full NHS
continuing care. Consequently many of their support and care services which are provided by Social Services
are chargeable via means testing. Similarly people going into residential or nursing home care on a respite
or permanent basis will also pay for this via a means test. The inequality experienced by people with
Parkinson’s disease is apparent when compared to someone with a “recognised” illness.
6.2 It appears that the care path that people enter, either primarily NHS, or through social care, heavily
influences their access/eligibility to NHS provision including palliative care. In order to ensure equality, it
is crucial that continuing health care is provided according to need and not disease label, age of the patient
or their history of NHS involvement. Care for people with Parkinson’s disease should clearly be a continuing
health care responsibility. We are delighted that the existing 95 health authority criteria have been
condensed into the 28 Strategic Health Authority criteria. We urge that it is essential that the Strategic
Health Authorities review their existing criteria to ensure that it is applied consistently and that the
implementation guidance builds upon good practice.
7. Review of Past Funding Decisions to Readdress the Consequences Where Patients Were
Wrongly Denied Funding
7.1 We welcome that the Department of Health have provided restitution to individuals who were
wrongfully denied funding for their long-term care, however we have heard of situations where individuals
incurred delays from NHS bodies in paying money owed to them, and where some havebeen re-assessed as
being incorrectly denied money.
7.2 We would urge that the new framework is explicitly clear and that the supporting guidance leaves no
room for error in the implementation of the criteria. Individuals must not be unfairly denied funding for an
essential service that they require.
7.3 The Society welcomes that Strategic Health Authorities must review their eligibility criteria to ensure
that they are lawful and consistent, and both current and past cases must be reviewed to ensure that
individuals are reimbursed when they have been unfairly denied continuing care.
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8. Further Developments to Support the Implementation of a National Framework
8.1 We welcome the development of a national framework for assessing continuing care, but there still
remains the challenge of implementation and interpretation of the criteria. We would recommend the
development of assessment tools and good practice guidance to support the implementation of the criteria.
8.2 It is essential that the assessments consider the issues of stability or complexity or intensity of need
from all the perspectives and over the full period, and not at a single point in time.
8.3 NHS bodies need further support, guidance and development from the DOH to expand local capacity
and to ensure all new requests for continuing care are decided promptly and properly and according to a
national framework.
February 2005
APPENDIX 16
Memorandum by the Relatives and Residents Association (RRA) (CC 25)
Introduction
This memorandum is submitted by the Relatives & Residents Association, a national charity established
to promote the interests and welfare of older people in long-term care and to provide information and advice
to their relatives who support them. The RRA operates a daily advice phone line, supports local groups of
relatives and residents, works with staV in care homes to improve quality of life for residents, runs projects
and comments on policy developments aVecting older people in relation to long term care.
EVIDENCE
1. The Ministerial Statement on NHS Continuing Care—9 December 2004
The RRA welcomes the statement by the Minister announcing that national framework setting out
criteria for assessing eligibility for continuous care will be drawn up. It will go some way to iron out the
already-acknowledged regional inconsistencies that many people have experienced in the past. However
other problems remain. On the basis of experiences described by callers to the RRA advice line, there is a
widespread lack of correct information about the complexities of long-term care. Particular concerns are:
— People remain confused about the diVerence between continuing care and the highest band of
registered nursing care.
— There is a lack of clearly expressed information that people can understand about the eligibility
criteria currently in use.
— Once awarded fully-funded NHS care, they worry about the possibility of being denied NHS
funding on subsequent reassessment of needs and about the unplanned financial consequences this
might have (leading to fears that patients or families may be faced with unplanned financial
burdens, retrospective responsibility for payment of fees and/or care home relocation/eviction).
— Health and social services staV continue to provide wrong information to relatives and residents
about eligibility for continuing care and/or highest band registered nursing care.
— Although social services departments are responsible for financial assessments which must be done
separately from needs assessment, some hospital discharge teams, wrongly, are taking financial
circumstances into account at the same time as making an assessment of needs.
— There is a burning sense of injustice about the financial burdens experienced by those who
narrowly miss eligibility for continuing care.
2. How the Changes Will Build on the Work Already Undertaken by SHAs in Reviewing Criteria
for NHS Continuing Care and Developing Policies
The RRA hopes that the introduction of national eligibility criteria will provide an opportunity for local
authorities, local care providers and local health organisations to improve the quality of baseline needs
assessments, care management procedures and record-keeping. However, national guidance (though not
national eligibility criteria) has existed for some time and yet this has not prevented the inconsistencies and
inequities that have arisen. It is also a matter for concern that the completion of the SHA reviews has been
impeded by poor quality data at local level. This reflects a fundamental lack of regard for the older people
whose needs were being assessed. The RRA hopes that all relevant agencies, including the Commission for
Social Care Inspection, the Healthcare Commission and the OYce of the Ombudsman, will take note of
these evident failings and take steps to make, or call for, radical improvements.
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3. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for Their Long-term Care
Reports from the Ombudsman reveal the scale of the injustice that thousands of older people have
suVered. Many of these individuals have died and have not had their wrongs righted. In other cases, the
consequences of the initial assessment decisions have been so far-reaching that they can never be reversed
even if the older person is still alive. Individuals have been placed in inappropriate care-settings and denied
access to the sort of health care necessary to meet their needs and at cost to their longer-term health and
welfare. Houses have been sold and capital has been spent. As well as the financial losses involved, emotional
and other psychological attachments have been broken. Sometimes family members have been made more
vulnerable as a consequence.
Furthermore, the Ombudsman has so far only been looking at past decisions; the fear is that wrong
decisions are continuing to be made and yet the possibility of discovering them is negligible. The Healthcare
Commission complaints system is overloaded and complaints about continuing care decisions are simply
not being investigated—yet these are cases which need to be investigated urgently. Future health care, social
and living arrangements as well as financial circumstances rest on the assessment decision and where a wrong
decision has been made it needs reversing as quickly as possible. Worse still, the complainant may be old
and unlikely to live for the length of time it takes to investigate the complaint. As with past cases, the
injustices will never be resolved for those individuals.
4. What Further Developments Are Required to Support the Implementation of a National
Framework
The following are required:
— Robust training, repeated and updated regularly, in applying the new criteria for all those health
and social care staV involved in assessment.
— Clear guidance on recording the assessment decision-making process and outcome to provide an
audit trail should complaints be made.
— Copies of the assessment written in clear jargon-free language to be provided to users and carers.
— Guidance and training for Healthcare Commission reviewers to ensure they assess NHS
performance on implementing the new national framework.
— Guidance and training for CSCI inspectors in ensuring that they assess social services departments’
performance on implementing the new national framework.
— Guidance and training for CSCI inspectors in ensuring that care homes fulfil their role in
monitoring changing health care needs.
— Active liaison between all agencies involved in all stages of assessment and review, including the
OYce of the Ombudsman.
— Production of information about the national framework that is accurate, comprehensive and
written in lay terms and is made widely accessible to the general public.
— Evaluation of the implementation of the national framework.
February 2005
APPENDIX 17
Memorandum by Help the Aged (CC 28)
Summary
Help the Aged’s central recommendation to the Committee is that the Government’s activity to develop
a new national framework for NHS Continuing Care should work towards the development of a single set
of national eligibility criteria for NHS Continuing Care, supported by a single process for assessing
eligibility. There must be reliable and comprehensive information available to patients and professionals to
provide clear guidance on assessing needs and the funding of care, encompassing the Single Assessment
Process for Older People, the Registered Nursing Care Contribution process, and NHS Continuing Care.
In this submission, Help the Aged restricts its comments to the specific issue of NHS Continuing Care.
However, it is not possible to separate the issues relating to NHS Continuing Care from our position
concerning free personal care, which remains unchanged. We believe that if the Government committed to
providing free care on the basis of need, then some of the diYculties relating to Continuing Care could be
significantly alleviated as the debate about which agency is responsible for diVerent aspects of care receded.
We would encourage the Health Select Committee to revisit the wider questions relating to paying for care,
and to the division between health and social care, in a future inquiry.
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Our recommendations can be summarised as follows:
— The national framework for NHS Continuing Care must address older people’s access to reliable
information and advice.
— There should be a single set of national eligibility criteria for NHS Continuing Care, supported by
a consistent approach to the assessment of need and the tools to establish eligibility against the
criteria.
— The national framework for NHS Continuing Care should also address the relationship with the
RNCC determination.
— The national framework must address the assessment of eligibility, not just the criteria itself.
— The process of requesting a review must be simplified.
— Older people and their families need access to better quality information on their potential
entitlement for NHS Continuing Care funding.
— Attention should be given to those individuals who live in their own homes or in residential care
whose needs may, over time, develop to meet the criteria for NHS Continuing Care.
— The panels set up to make decisions about cases need to operate in an open and transparent way,
and there should be clarity about the role that individual patients and their families can play in the
work of the panels relating to their own case.
— Strategic Health Authorities should be encouraged to take a proactive approach to identifying
those older people who may already be, or who may in the near future, become eligible for NHS
Continuing Care.
— The situation of residents of care homes who are supported by the local authority should be
examined as part of the Government’s work around the national framework.
— The Government should address the position of self funding residents and those living in
independent sector care homes in relation to the current non-application of the Human Rights Act.
— The RNCC bandings must be consistent with the new framework for NHS Continuing Care.
— Consideration should be given to how the system for NHS Continuing Care can be reformed so
that it no longer rewards dependency and penalises independence.
— Patients who are eligible for NHS Continuing Care must have real choice in where and how their
care is provided.
— Individuals should not be required to “top up” the NHS contribution towards their NHS
Continuing Care costs in order to exercise some choices about their care.
— All frontline health and social care staV should receive training on NHS Continuing Care, and
should understand their role.
— Stronger links must be made between the Single Assessment Process for Older People and
determination of eligibility for NHS Continuing Care.
— Patients and their families should have access to independent advice and support where needed to
ensure that they receive what they are entitled to.
1. Introduction
1.1 Help the Aged’s vision is of a future where older people are highly valued, have lives that are richer
and voices that are heard. Working with older people, we champion their needs so that they can better their
lives. Through research, campaigning and fundraising we develop solutions, drive activities and inspire
others to do the same. Our strategy is to attack and remove the major barriers to active and fulfilled later
lives, and to concentrate our eVorts on those older people most at risk of disadvantage or social exclusion.
Our four urgent priorities are combating poverty; reducing isolation; defeating ageism; and promoting
quality in care.
1.2 Help the Aged does this by providing a range of direct services in the UK to help older people live
active and independent lives, funding vital research into the illnesses and social context of ageing, and
funding international activities.
1.3 Help the Aged welcomes the Health Select Committee Inquiry into NHS Continuing Care, which has
been an issue of great concern to some of the most vulnerable older people, and their families, for several
years. Equal access to care and support is a cornerstone of the National Health Service. Yet access to NHS
Continuing Care and the funding that goes with it appears to be anything but equitable.
1.4 Help the Aged has welcomed the steps taken by the Alzheimer’s Society in producing the information
booklet, When does the NHS pay for care? Guidance on eligibility for continuing NHS health care funding in
England and how to appeal if it is not awarded, which goes some way to addressing the widespread confusion
and uncertainty about what individuals with complex healthcare needs are entitled to, and how individuals
should go about securing that entitlement. The availability of and access to reliable and accurate
information is a major concern in relation to access to NHS Continuing Care funding.
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2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
2.1 Help the Aged has cautiously welcomed the statement by the Minister made on the 9 December 2004.
In our view, this statement indicated a subtle yet significant change in the approach being taken by the
Government in relation to NHS Continuing Care, and a recognition that the existence of 28 diVerent criteria
with diVerent systems for assessing eligibility against those criteria is unnecessarily confusing for patients
and practitioners. Help the Aged has for some time stated our belief that there should be a single set of
eligibility criteria for the whole country, supported by an eVective system for assessing eligibility against the
criteria. The Minister’s decision to announce the commissioning of a national approach to the assessment
for fully funded NHS Continuing Care is therefore, in our view, a significant, if only initial, step in the right
direction.
2.2 We have also welcomed the Minister’s recognition of the importance of making the process “easier
to understand for practitioners and patients alike.” There is considerable uncertainty and confusion among
older people and their families about what their rights and entitlements to NHS Continuing Care might be.
Help the Aged believes that improving older people’s access to reliable information and advice concerning
NHS Continuing Care is an essential part of the solution to such confusion.
2.3 In our view, the case for a single set of eligibility criteria to be used by all Strategic Health Authorities
is compelling. Such an approach would help to avoid a repeat of past mistakes in the steps taken by the NHS
to meet its statutory obligations to provide care and support to those with complex health needs. However,
a single set of eligibility criteria is only one part of the solution to the challenges posed by NHS Continuing
Care, albeit a crucial one.
2.4 The Minister’s statement indicates the Government’s view that the 28 current sets of eligibility criteria
are compliant with the law. Help the Aged cannot comment on whether this is the case. However, we are
concerned that even if the criteria themselves are compliant with the law, the systems in place to assess
whether an individual meets the criteria vary widely across Strategic Health Authorities. There is certainly
anecdotal evidence to suggest that the tools being used in some locations raise the threshold for eligibility
even beyond that set out by the criteria themselves. Help the Aged is concerned that the assessment process
itself is being used inappropriately as a mechanism to “gate-keep” access to NHS Continuing Care funding.
2.5 Help the Aged is also concerned that the Minister does not appear to have made explicit the
connection between the determination of Registered Nursing Care Contribution (RNCC) for residents of
care homes providing nursing care and the assessment for NHS Continuing Care funding. Older people and
their families are often confused about the relationship between a decision about their eligibility for NHS
Continuing Care, and the determination of the appropriate level of nursing care funding to meet their
assessed needs. We return to this point in greater detail below.
2.6 In summary, Help the Aged recommends:
— The national framework for NHS Continuing Care must address older people’s access to reliable
information and advice.
— There should be a single set of national eligibility criteria for NHS Continuing Care, supported by
a consistent approach to the assessment of need and the tools to establish eligibility against the
criteria.
— The national framework for NHS Continuing Care should also address the relationship with the
RNCC determination.
3. How the Changes Will Build Upon the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
3.1 Help the Aged acknowledges the steps being taken by Strategic Health Authorities in light of recent
attention to the issue from the Government, the Health Service Ombudsman and the media. We also
acknowledge the work that has already been done by Strategic Health Authorities to review their criteria
and to ensure that they are, to the best of their knowledge, compliant with the legal requirements.
3.2 The streamlining of the local criteria in operation as a consequence of Shifting the Balance of Power
from 95 to 28 (reflecting the number of Strategic Health Authorities) was also a welcome move in alleviating
the confusion caused by the existence of so many diVerent sets of criteria.
3.3 However, we believe that in many instances, Strategic Health Authorities have concentrated their
activities on the local criteria in isolation from the mechanisms with which eligibility against the criteria is
assessed. It is therefore vital that the new national framework for NHS Continuing Care also addresses the
process of assessment against the criteria, and not just the criteria themselves.
3.4 It appears that many Strategic Health Authorities have responded to requests to re-examine cases
brought to their attention by older people or their families, rather than taking a proactive approach to
identifying those people who may have been unfairly meeting the costs of their own care. Many older people
and their families are often uncertain about whether they have been assessed against local NHS Continuing
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Care criteria, and indeed what the outcome might have been. Others, by contrast, find themselves in receipt
of NHS Continuing Care without a need to request it themselves. Such a contrast in access to an assessment
against the criteria is, in our view, unacceptable.
3.5 We have been concerned for some time about the complexity of the system for patients and their
families who request a review of their care against the local criteria. The process can seem daunting, and the
time and energy required can deter some people from pursuing their potential entitlement. It is not
uncommon for the first hurdle to be establishing what the local criteria might be, and how to go about
requesting a review. Individuals are often unclear of what their rights are, and often find it diYcult to access
information on the local process. The need to negotiate a path through such a complex system, of course,
is often coming at a time of great stress to the individual and their family.
3.6 The intervention of the Health Service Ombudsman in recent years on this issue has been very
welcome, and has provided individuals with a source of additional advice and support. In Help the Aged’s
view, it is vital to improve access to information and advice and to increase the transparency at a local level
around eligibility for NHS Continuing Care. Better communication and openness would go a long way
towards removing some of the mystery concerning eligibility, and reducing the pressure on individuals trying
to establish whether they are entitled to NHS Continuing Care.
3.7 Help the Aged has also welcomed the steps being taken by the NHS to improve the mechanisms by
which new cases are assessed against local criteria, the majority of whom are in acute hospital settings.
However, we remain concerned about those individuals who are less visible to the system, such as those in
their own homes or in residential care whose conditions may worsen over time to the point at which they
may become eligible for NHS Continuing Care. In these circumstances, the individual’s chances of being
picked up by the system depends almost entirely on those NHS professionals who provide their care, such
as general practitioners, among whom the level of awareness about NHS Continuing Care is much lower
than those care professionals who are perhaps dealing with such cases on a more regular basis (such as those
working in care homes providing nursing care, or in hospital settings).
3.8 Help the Aged is also concerned about the composition of, and decisions made by, panels set up to
review cases and to reach a decision about eligibility. We share the concerns that in some instances, these
panels appear to be overturning the advice and recommendations of healthcare professionals, including
nurses. There is also considerable inconsistency in whether individual patients and/or their families can
attend such panels or contribute towards them in any way. In our view, there must be a national approach
to the operation of such panels as a matter of urgency.
3.9 In summary, Help the Aged recommends:
— The national framework must address the assessment of eligibility, not just the criteria itself.
— The process of requesting a review must be simplified.
— Older people and their families need access to better quality information on their potential
entitlement for NHS Continuing Care funding.
— Attention should be given to those individuals who live in their own homes or in residential care
whose needs may, over time, develop to meet the criteria for NHS Continuing Care.
— The panels set up to make decisions about cases need to operate in an open and transparent way,
and there should be clarity about the role that individual patients and their families can play in the
work of the panels relating to their own case.
4. Whether the Review of Past Funding Decisions Has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for Their Long Term Care
4.1 Help the Aged acknowledges that the retrospective review of past funding decisions has alleviated the
circumstances of those who have subsequently been found to have been wrongly denied NHS funding for
their care, and we recognise the scale of the challenge facing Strategic Health Authorities. However, some
areas have taken a more proactive approach to the review process than others.
4.2 We remain concerned that many of the reviews were initiated by individuals or their families
approaching the Strategic Health Authority to request a review of their eligibility, rather than as a result of
the actions of the Authorities in proactively identifying cases. This suggests that there may be large numbers
of individuals and cases who are either unaware of their potential entitlement, or who have otherwise been
“put oV” from requesting a review.
4.3 The position of care home residents already supported by the local authority is also in need of further
attention. Help the Aged shares the concern expressed by the Nursing Home Fees Agency and others about
the individuals who may have unfairly contributed their pensions or benefits towards the costs of care which
should have been provided by the NHS. The review process has, to date, concentrated on those individuals
who have been financing the costs of their own care (ie “self funders”).
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4.4 Self funding residents of care homes providing nursing care, the majority of which are in the
independent sector, are also excluded from the protections aVorded to others through the Human Rights
Act. Help the Aged has highlighted these issues elsewhere,6 but believes that in the context of NHS
Continuing Care, it further underlines the importance of a resolution to the non-applicability of the Human
Rights Act to independent sector care homes.
4.5 A decision about an individual’s eligibility for NHS Continuing Care is often only taken at a point
of crisis, such as admission to and discharge from hospital. The mechanisms by which a person’s slow and
progressive decline can be closely monitored and measured against the local criteria is much less clearly
defined. Help the Aged is concerned that many people may be going unnoticed by the NHS despite becoming
eligible for NHS Continuing Care as a result of such a decline, particularly among those older people who
may be living in either their own homes, or in residential care. In our view, it is therefore essential for there
to be close connections between the implementation of the Single Assessment Process for Older People and
eligibility for NHS Continuing Care.
4.6 In summary, Help the Aged recommends:
— Strategic Health Authorities should be encouraged to take a proactive approach to identifying
those older people who may already be, or who may in the near future, become eligible for NHS
Continuing Care.
— The situation of residents of care homes who are supported by the local authority should be
examined as part of the Government’s work around the national framework.
— The Government should address the position of self funding residents and those living in
independent sector care homes in relation to the current non-application of the Human Rights Act.
5. What Further Developments Are Required to Support the Implementation of a National
Framework
5.1 Help the Aged believes that it is essential for the Department of Health’s work on the national
framework to take account of the connection between the RNCC determination and the assessment for
eligibility for NHS funded Continuing Care. In particular, the Government should re-examine the RNCC
bandings to ensure that they are consistent with the new national framework for Continuing Care, and that
patients and professionals are clear about the inter-relationship between the two processes. In particular,
the relationship between the highest band of nursing care funding and eligibility for NHS Continuing Care
is the cause of much confusion among older people and their families, and indeed among some professionals.
Some of the cases which were subsequently awarded NHS Continuing Care funding were initially identified
as being only eligible for the middle or high band of funded nursing care.
5.2 We are also concerned that the current system rewards dependency, and fails to incentivise recovery
or rehabilitation. There is no incentive for individuals, care providers or professionals to improve a person’s
overall health and wellbeing, or indeed to leave a hospital bed, as the individual would stand to lose an
entitlement to NHS funding. In Help the Aged’s view, it is only by delivering free personal care that this
anomaly could adequately be addressed.
5.3 Similarly, there is no incentive on the part of care home providers to request a review of an individual
resident’s eligibility against local NHS Continuing Care criteria. Care home providers are a vital part of the
system for ensuring that appropriate referrals to an assessment against NHS Continuing Care criteria are
made, yet are currently underutilised. In many instances, the level of fees paid by the NHS is much lower
than the market rate for a place in a care home providing nursing. A resident who moves from being a self
funder to being eligible for NHS Continuing Care may be faced with the prospect of having to move to less
expensive accommodation. Moving such vulnerable and frail patients in such a way increases the risk of
further damaging their health and wellbeing.
5.4 Help the Aged is also concerned that individuals who are eligible for NHS Continuing Care often do
not have the same benefits of choice in where and how their care will be delivered. The Government is
committed to extending principles of choice to the health care system, and yet there is a real danger that such
choice may exclude those with continuing healthcare needs. We are deeply concerned about the prospect of
individuals being expected to “top up” fees which are over and above what the NHS would pay in a care
home. Such a situation would simply replicate the existing inequities that aVect large numbers of local
authority funded residents in care homes.
5.5 The Health Service Ombudsman has highlighted the issue of training for health and social care staV
in recognising the signals that an individual may now be eligible for NHS Continuing Care. Help the Aged
supports this recommendation, and believes that comprehensive training must be available to all staV
working with older people in institutional settings (such as hospitals and care homes) and in the community
(such as social care workers, GPs and district nurses).
6
Harding, T. & Gould, J. (2003) Memorandum on older people and human rights. London: Help the Aged.
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5.6 Help the Aged believes that it is vital to clarify the connection between the Single Assessment Process
for older people and assessment of eligibility against NHS Continuing Care criteria. The Single Assessment
Process must ensure that (a) an individual’s needs are recognised and assessed, (b) that an appropriate
package of care is developed that responds to all the needs of the person (not just their medical needs), and
(c) that the care is funded appropriately. The NHS and local councils should be encouraged to strengthen
the connections between the two processes, as a means to improving the mechanisms by which changes in a
person’s condition can be regularly reviewed and monitored, and can where necessary trigger the automatic
entitlement to NHS Continuing Care.
5.7 We also believe that individuals and their families should have access to better information, advice
and support around their potential eligibility for NHS Continuing Care, as a means to remove the barriers
which currently exclude people from the system. Where necessary, this may involve the need for independent
advocacy to ensure that a person is able to participate fully in the process, and to ensure that an individual
receives what they are entitled to. In some local areas, such services are provided by the voluntary sector,
and provide a vital resource in ensuring that older people and their families have access to information and
support to obtain their entitlements. This is particularly important in circumstances in which the individual
may not have the capacity to pursue their own case.
5.8 In summary, Help the Aged recommends:
— The RNCC bandings must be consistent with the new framework for NHS Continuing Care.
— Consideration should be given to how the system for NHS Continuing Care can be reformed so
that it no longer rewards dependency and penalises independence.
— Patients who are eligible for NHS Continuing Care must have real choice in where and how their
care is provided.
— Individuals should not be required to “top up” the NHS contribution towards their NHS
Continuing Care costs in order to exercise some choices about their care.
— All frontline health and social care staV should receive training on NHS Continuing Care, and
should understand their role.
— Stronger links must be made between the Single Assessment Process for Older People and
determination of eligibility for NHS Continuing Care.
— Patients and their families should have access to independent advice and support where needed to
ensure that they receive what they are entitled to.
February 2005
APPENDIX 18
Memorandum by Help the Hospices (CC 31)
1. Introduction
Help the Hospices—the national charity for the hospice movement—welcomes the Health Select
Committee’s inquiry into Continuing Care. In this submission, we provide a brief introduction to the
hospice movement and go on to address the issues raised by the Committee in the terms of reference, putting
forward proposals for the Committee’s consideration.
The focus of our response to this inquiry is on the issues that Help the Hospices would like the
Government to address in developing a national framework for fully funded NHS Continuing Care.
Help the Hospices supports hospices in the UK through grant-aid; education; training; information and
advice. We also act as the national voice for the 188 adults’ and children’s hospices run by local charities
(known as “independent” hospices). These services provide 72%7 of inpatient hospice care in the UK along
with a significant proportion of those services provided in day centres and in patients’ homes. This
submission has been put together following consultation with independent hospices and is informed by our
ongoing discussions with hospice staV, trustees and volunteers. Help the Hospices represents independent
hospices across the UK, but our proposals in this submission relate to England as this is the scope of the
Health Committee’s inquiry.
7
Taken from figures given in the Hospice Directory 2004, published by hospice information.
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2. Response to Terms of Reference
What further developments are required to support the implementation of a national framework?
2.1 Strict Life Time Expectancies
Help the Hospices has concerns that the fully funded NHS Continuing Care system is not working as it
should. Help the Hospices main concern is Strategic Health Authorities Criteria for Continuing Care stating
strict life time expectancies. Restricted time limits are inappropriate for people nearing the end of life because
prognosis and assessment is very diYcult. National Guidance makes clear that application of time limits is
not appropriate. Section 18 from the Department of Health guidance circular HSC 2001/015: LAC (2001) 18
“Continuing Care: NHS and Local Councils’ responsibilities, regarding end stage terminal illness
states that the setting of care should not be the sole determinant of eligibility and that patients who
require palliative care and whose prognosis is that they are likely to die in the near future should
be able to choose to remain in NHS funded accommodation or to a return home with appropriate
support. This includes hospice and hospital care, Nursing Home care or care in one’s own home.
Patients may also require episodes of palliative care to deal with complex situations. The number
of episodes required will be unpredictable and applications of time limits for this care are not
appropriate.
The Regulatory Impact Unit announced in making a diVerence, Reducing Burdens in hospitals—July 2002
that Strategic Health Authorities would be aligning continuing care in October 2002 to meet national
guidelines. In April 2004 Help the Hospices wrote to all 27 Strategic Health Authorities requesting a copy
of their continuing care criteria. We received 18 responses. The criteria sent from six Strategic Health
Authorities stated restricted life time expectancies. The timescales mentioned ranged from the next few days
to 12 weeks. Details of time scales can be found in Annex A.
One set of criteria, which stated restricted life time expectancies stated “to die in the near future, whilst not
being prescriptive near future will be around four to eight weeks”. Another set of criteria stated “A person in
the final stages of a terminal illness and is likely to die in the near future. Explanation: A person who qualifies
under this condition will have been assessed by the doctor responsible for their care and will have been given a
prognosis that they are likely to die within eight weeks”. We are concerned that by saying that an absolute
time scale is not appropriate, but then stating restricted life time expectancy, the time scale stated will be put
in to practice locally.
The timescales identified in the criteria make for very inconsistent local practices. As a Social Work
Manager from an independent Hospice said to Help the Hospices “Any co-ordination would be great. We
work across various PCT’s all with diVerent criteria!!” This means that hospices working across several
Strategic Health Authorities are working with very diVerent guidelines and criteria.
Help the Hospices recommends in developing a national framework for continuing care, the Government should
ensure that Strategic Health Authorities remove restricted life time expectancies from their criteria.
2.2 The need to consider specific issues aVecting those at the end of life.
Help the Hospices held a workshop on continuing care in October 2003. Since this time hospices have
been feeding in to us issues they are experiencing locally in accessing continuing care.
One issue brought to our attention was the local PCT running out of continuing care funding. One hospice
colleague told Help the Hospices that “the local PCT had run out of funding for continuing care and patients
were routinely now being transferred to local community hospitals and the Local Authority was funding care
packages which were not really their responsibility to help out”.
Further problems hospice colleagues are encountering include, lack of carer availability, lack of Nursing
Home bed availability, lack of equipment availability, lack of provision for young people, skills of workforce
lacking, issues around the quality of care available due to a national staYng crisis both in the community and
nursing homes. Particular problems have been reported when trying to access continuing care for patients in
the community. Problems include slow service and lack of equipment.
Speed of assessment, decision-making, funding authorisation and service provision is too cumbersome
and slow to meet the needs of people near the end of their lives. Government believes that people should be
able to die in the place of their choice. However these reoccurring problems often prevent people nearing
the end of life from doing just that. At the workshop Help the Hospices held on Continuing Care in October
2003 staV from independent hospices told us that patients often died before assessment took place or services
were provided. Speed of decision-making needs improving. Patients miss their short “window of
opportunity” to be moved to their preferred destination to die.
Help the Hospices recommends that any national framework for fully funded NHS continuing care needs to
consider the specific needs of people nearing the end of life.
February 2005
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Annex A
CONTINUING CARE SUMMARY
Following a discussion on Delayed Discharges at the IHRC VSSG meeting in April Help the Hospices
wrote to all 27 Strategic Health Authorities requesting a copy of their continuing care criteria. Draft criteria
in 2002 had stated restricted life time expectancies. National guidance states that this should not be in place.
The Regulatory Impact Unit announced in Making a diVerence, Reducing burden in hospitals—July 2002,
that Strategic Health Authorities would be aligning continuing care in October 2002.
To date Help the Hospices have received 18 responses. Attached is a summary of the information we
have received.
Cheshire and Merseyside
Page 4—Eligibility Criteria—The person is in the final stages of a terminal illness, whereby medical
opinion identifies that the patient is on a progressive state of decline and life expectancy is likely to be only
days, weeks or months.
South Yorkshire
Page 7—Where following a multidisciplinary assessment the individual is identified as having advanced
active progressive life-threatening disease: their prognosis is expected to be death in days to weeks rather than
weeks to months.
Shropshire and StaVordshire
No time scale mentioned.
Bedford and Hertfordshire
Page 9—criterion 3—End stage Terminal illness—Patient falls in to this criterion if they are in a progressive
state of decline, for example, with a life expectancy of less than three months.
North East London
Page 4—The individual is in the final stages of a diagnosed terminal illness and is likely to die in the near
future.
Leicestershire, Northamptonshire and Rutland
Section 2—page 7 of 15—The individual is in the final stages of a terminal illness and is likely to die in the
near future.
West Midlands South
Section 2—Eligibility Criteria—Where an individual is in the final stages of a terminal illness and likely to
die in the near future.
Section 3—Putting Policy into practice—Palliative care—page 8
A terminally ill patient may meet the eligibility test in two ways
(a) If they are “in the final stages of a terminal illness and likely to die in the near future”. There is no
clear definition of what consists a final stage of a terminal illness for the purposes of eligibility for
this criterion, but in practice, a time period of between four to six weeks will be taken as a yardstick
for this test.
Essex
Eligibility criteria—Page 14
3. The definition of being terminally ill is if someone is expected to die within three months. Whilst this
aVords a measure of judgement, if the person has an illness as a result of which there is less than a 50% chance
of surviving beyond three months, it should be said that the person is expected to die within three months.
7. The three-month prognosis should not be applied too rigidly. It may be that a person who it was thought
would die within three months and is placed in a Health setting actually does live longer. In that case, the Health
service will continue to accept responsibility so long as death is expected to occur in the short term.
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Dorset and Somerset
Eligibility criteria
The individual is in the final stages of a terminal illness and is likely to die in the near future
North and East Yorkshire & Northern Lincolnshire
Page 12—Someone in the very final stages of a terminal illness and is very likely to die in the near future...
As a rough guide someone in the very final stages of a terminal illness and very likely to die in the near future
is considered where it can be measured in days/weeks rather than months and the prognosis should be
confirmed by the patient’s clinical lead.
County Durham and Tees Valley
Eligibility—The individual is in the final stages of a diagnosed terminal illness and is likely to die in the
near future.
Greater Manchester
Eligibility—The service user is experiencing the end of life of a terminal illness and is not expected to live
for a long time.
“end of a terminal illness”
Stated by a specialist or a multidisciplinary team to be very close to death. It is not possible or appropriate
to be prescriptive about a time scale for this.
Hampshire and Isle of Wight
Eligibility criteria—The individual is in the final stages of a terminal illness and is likely to die in the near
future, whilst not being prescriptive “near future” will be around 4–8 weeks.
Northumberland, Tyne and Wear
No time limits stated.
North Central London
Eligibility criteria—The individual is in the final stages of a terminal illness and is likely to die within the
next 12 weeks. This should not, however, be applied restrictively and individual circumstances must always
be considered. (Taken from revised criteria going out for consultation shortly)
Trent
Eligibility criteria—Require terminal care, which is the care oVered to individuals in the last few days or
weeks of life. Because of its special nature it is categorised in a diVerent way as a separate level of eligibility
criteria.
Individuals who have a medical condition that is know to be life limiting, that is causing a physical
deterioration on a daily or weekly basis, such that it is likely that they will die within the next month, require
terminal care.
Their condition is assessed as being in a progressive state of decline, is in the end stage of a terminal illness
and is likely to die in the next few days or weeks.
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Dorset and Somerset
Page 29—Continuing care for terminally ill people in a setting will be funded by the NHS where a person is
in the final stages of a terminal illness and is likely to die in the near future.
Avon, Gloucestershire and Wiltshire
Page 4—A person in the final stages of a terminal illness and is likely to die in the near future.
Explanation: A person who qualifies under this condition will have been assessed by the doctor responsible
for their care and will have been given a prognosis that they are likely to die within eight weeks.
APPENDIX 19
Memorandum by Mackintosh Duncan Solicitors (CC 32)
We are a firm of solicitors specialising in the fields of health care, community care, incapacity and mental
health law. We represent service users and their carers in enabling them to access the services to which they
are entitled and require by virtue of illness, disability or any other reason.
We were the instructing solicitors in the case of R v North and East Devon Health Authority, which resulted
in the Court of Appeal judgment in July 1999. Since that time we have advised on numerous cases concerning
NHS continuing care issues.
Summary
We have seen and contributed to the submission from The Law Society and endorse the points made in
that submission.
It is our view that the recent announcement of Stephen Ladyman of a national framework for NHS
funded continuing care will not resolve the current crisis. Any framework which is open to interpretation
and based upon the Department’s current understanding of its legal responsibilities will lead to more
confusion and injustice. Another framework will do nothing to address the core problems if its content is
incorrect and misleading. If the Registered Nurse Care Contribution is retained, a national framework will
do nothing to correct the perception that has been created that only those people whose needs exceed the
high band are eligible for continuing NHS health care.
The current position has been caused by the refusal of the Government to accept and implement the
judgment of the Court of Appeal in the Coughlan case. Mr Ladyman’s announcement was accompanied by
a comment that previous eligibility criteria applied by health authorities had been lawful. As confirmed by
the study into criteria in 1999 undertaken by the Royal College of Nursing, when 90% of criteria analysed
were said to be outwith the Coughlan judgment. It is our experience that criteria applied now (with the
implementation of the RNCC tool—see below) are more draconian than prior to the judgment of the Court
of Appeal and shift purchasing responsibilities unlawfully onto social services.
The judgment of the Court of Appeal in the Coughlan case clearly establishes that where a person’s
primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS
is responsible for the full cost of the package. Contrary to the picture painted by the Government, social
services authorities may only purchase nursing services in strictly limited situations, in accordance with the
judgment. Whilst much of the debatehas concentrated on nursing home placements, it must also be
remembered that eligibility for NHS funded care is not relevant to the location in which that care is provided.
Those people cared for in their own homes whose primary need is for health care may well be eligible for
NHS funded care.
The boundary between health and social care is a matter of law and not a policy issue. Until and unless
Parliament provides otherwise, health services must be provided free at the point of delivery. However, the
current system works to achieve the opposite—charging those who are most ill for the provision of services
for which they have already paid.
The introduction of the system of “free nursing” under the RNCC tool (which defines nursing care as
being the exclusive remit of registered nurses) has been the most significant step taken by the Department
in avoiding its legal responsibility for the provision of NHS funded continuing care. Practitioners and
statutory bodies have accepted the RNCC tool as replacing continuing care, with only those whose needs
are above the highest band of RNCC qualifying for NHS funded continuing care.
The Department of Health has failed to take a lead in assisting health authorities, NHS Trusts and PCTs
as to the correct legal approach they should take with regard to continuing care, despite being urged to do
so by the Health Service Commissioner. The outcome has been confusion on the part of the statutory
authorities, unnecessary expense in undertaking reviews of eligibility, and distressing/unsatisfactory
outcomes for patients and their relatives.
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We have seen many sets of eligibility criteria currently being operated. In our view, none of those criteria
are in accordance with the Coughlan judgment. In many cases, people would be eligible only if they were
near death. and seen by our members are not in accordance with the Coughlan judgment. There continues
to be a mistaken belief that chronic health care for patients in a stable condition is no longer the
responsibility of the NHS. This was the very error which led to the Coughlan case being brought.
We have severe concerns as to whether the proposed framework will do anything to remedy the existing
problems in view of the history and the unwillingness of the Government to grapple with the problem and
accept responsibility for past mistakes.
We endorse the approach taken by the Law Society and consider that a national framework will only
be of assistance if the following conditions are met:
(a) the RNCC system is abolished;
(b) the framework is one set of national eligibility criterion with a standard assessment method to be
applied by all Strategic Health Authorities, PCTs and NHS Trusts in conjunction with local
authority social services departments so that individuals whose primary need is a health need will
receive fully funded care no matter where or in what setting they live;
(c) the framework/criteria do not make any distinction between general or specialist nursing care, as
both are nursing care arising from healthcare (as opposed to social care) needs;
(d) the framework/criteria emphasise that funding decisions should not be determined by the
predictability of a condition, the qualification of the professional undertaking the care or the
nursing discipline concerned—the crux is the health of the patient and whether these are the
primary need, as well as the “ancillary/incidental test” set out by the Court of Appeal;
(e) the framework/criteria properly address the health needs of people with mental health conditions,
including dementia and learning disabilities; and
(f) that the Government takes proactive steps to ensure compliance.
Eligibility Criteria for NHS Funded Continuing Care
One of the most important consequences of the Coughlan judgment was the quashing of the eligibility
criteria for health services applied in North and East Devon (South and West Devon also had similar
criteria). However few details were given by the Court in the judgment of the criticisms of the actual criteria
under scrutiny in the case.
The criteria:
(a) diVerentiated between general nursing and specialist nursing care—which was found to be
“elusive”, and “unhelpful” by the Court;
(b) distinguished between nursing disciplines for the purposes of deeming eligibility—eg Stoma care
or tissue viability nurses were deemed to be “specialist” (ie NHS funded) and district nurses,
community psychiatric nurses were deemed to be “general” (ie social services funded). This was
rejected by the Court of Appeal; and
(c) distinguished between “specialist” and “general” nursing on the basis of a list of tasks—catheter
care, wound care, bladder washouts, artificial feeding etc were said to be “general” nursing care
and therefore social services’ funding responsibility within a nursing home.
The underlying diVerence between “general” nursing and “specialist” nursing as a mechanism for
determining funding responsibilities still remains, despite the criticisms of the Court of Appeal. This is a real
barrier to understanding the correct legal responsibilities for the purchase of long term health care.
Our experience of reviewing eligibility criteria currently being applied is that the criteria have become
more sophisticated and complex, with care domains and scoring systems. They mask the actual consequence
of their application, which is that the same incorrect assumptions about general and specialist care remain.
In particular, the following factors are invariably quoted as being relevant (list not exhaustive):
(a) predictability of care (the assumption is that predictable care is not usually health care);
(b) regularity of need for nursing care (this is usually access to a “registered” nurse, and if only
infrequently over a 24 hour period then the assumption is that the care tends towards social
services’ purchasing responsibilities);
(c) equating expectation of registration standards of a nursing home with purchasing responsibilities
(eg where the criteria state that a “normal” nursing home will have certain standards of staYng
and equipment, then this is usually deemed to be the social services norm for purchasing, with any
additional staYng being the responsibility of the NHS); and
(d) regularity of review by a consultant (the assumption is that infrequent review cases will be a social
services responsibility).
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Pamela Coughlan
Ms Coughlan’s condition and needs were said by the Court of Appeal to fall wholly within the funding
responsibilities of the NHS. However, her particular needs are considerably less than the majority of
residents in nursing homes. Therefore, applying the RNCC tool, Ms Coughlan would not meet the medium
or high band of RNCC, let alone the (higher) threshold of fully funded NHS care. Given the comments of
the Court of Appeal regarding her individual needs, we consider that this has been overlooked by health
authorities in developing their criteria.
Any national framework/criteria must operate so that if Ms Coughlan were to present herself in any area
of the country, she would be eligible for fully funded NHS continuing care.
National Criteria
The obligation of the Secretary of State is to provide a National Health Service under the NHS Act 1977
(as consolidated). Whilst this is a target duty, qualified by a range of factors, it should not allow for
variations in the right of access to health services. Needs can be met in diVerent ways across the country,
but this does not permit a diVerent right of access to health services.
The Court of Appeal’s judgment in Coughlan confirmed that the boundary between health care under the
NHS Act (the “Health Act”) and social care under the National Assistance Act 1948 (the “Social Act”) was a
matter of law and legal definition. It decided that the Health Authority in the case had unlawfully transferred
responsibility for health care services to local authority social services departments. The Health Authority
had crossed the line.
The consequence of this part of the judgment is that it is not a matter of agreement between a health
authority and a local authority where the boundary between health and social care should lie. This is in fact
a legal question, and social services are not permitted in law to purchase/provide health care services beyond
the very limited circumstances set out in the judgment. Nevertheless, we know from local authorities that
they have felt under great pressure from their health partners to agree to criteria which plainly involve the
purchase by social services of high level health care services.
The failure of the Department of Health to issue national criteria had led to 28 Strategic Health
Authorities developing widely diVerent criteria dependent on geographical location and also the approach
taken by diVerent local authorities. This is truly a “prescribing by post code” situation, but in relation not
only to medication, but some of the most crucial of health services, namely those required by the chronically
ill and vulnerable. True it is to say that 28 diVerent SHAs are better than the 100 previous Health
Authorities, but this does not correct the problem.
Moreover, diVerent NHS Trusts and PCTs have developed assessment tools for the application of the
criteria. This has further complicated the situation as although superficially Health Authorities are applying
the same criteria throughout all PCTs in their area, in practice diVerent assessment tools are being used
which result in diVerent outcomes.
In summary, therefore, the criteria assessment system is extremely complex, and not understood by
practitioners, service users and carers alike. It is arbitrary, dependent on location, and a whole range of
factors which are not aligned to the Coughlan test for continuing care.
We are of the view that a national set of criteria is the only way in which the existing complexity and
unnecessary suVering and cost can be avoided in future.
RNCC
We support the comments made by The Law Society regarding the detrimental eVect of the introduction
of the RNCC tool.
The RNCC system created a further complex layer of administrative diYculties and misled the public and
providers of services into assuming that it replaces the Coughlan judgment regarding NHS funded
continuing care. The RNCC is the creation of the Department of Health, not Parliament and the three bands
are arbitrary to the extent that the Department of Health had an almost entirely free hand in determining
the eligibility criteria for each band of support.
We support the view that those persons falling within the medium and high bands of the RNCC tool are
properly the legal responsibility of the NHS, as opposed to social services. On any sensible analysis, the
thresholds for the medium and high bands exceed the “ancillary and incidental” test set out by the Court
of Appeal.
In our view, the creation and development of the RNCC tool has proved to be the most significant reason
why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has
replaced consideration of whether a person’s primary need is for health care with an assumption that the
only nursing for which a person cannot be forced to pay (ie registered nursing) is health care. In our view
this has distorted the true legal responsibilities of the NHS as provided by the Court of Appeal and led to
widespread inequalities and injustice.
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Mental Health and Learning Disabilities
We have been assisting many people with mental health diYculties and/or learning disabilities in relation
to continuing care issues. Our experience is that it is most diYcult, if not impossible, to obtain fully funded
NHS care for a person with mental health diYculties or learning disabilities unless they have the most
extreme challenging behaviour, or their mental disabilities are accompanied by physical health needs.
There seems to be an assumption that mental health nursing or learning disabilities nursing is “non
medical” due to the fact that it involves high levels of supervision, as opposed to physical invasive
treatments.
Impact on Local Authority Social Services Departments
We are particularly concerned at the impact that the failures to fund continuing care has had upon local
authorities’ social services departments’ abilities to continue to fund community care services. Obviously,
if excessive (and unlawful) expenditure is taking place by social services in respect of health services, it means
that it is more diYcult for them to fund basic community care services. This has a knock on eVect upon the
most vulnerable sections of society, and means that certain client groups (eg older people) will be less
supported in the community. Thus a Catch 22 situation is created which works against rehabilitation and
support of people in the community.
February 2005
APPENDIX 20
Memorandum of Evidence from Continuing Care Conference (CCC) (CC 33)
1. Introduction: About CCC
1.1 CCC welcomes the Committee’s Inquiry into NHS Continuing Care and is pleased to have the
opportunity to submit written evidence to the Inquiry.
1.2 CCC is a broad-based, independent coalition of commercial, charitable and public service
organisations that have a common interest in improving the care of older people in the UK based on an
equitable and sustainable structure of funding. CCC has published research on the prevention of
dependency in later life, and genetic tests and long-term care.
1.3 CCC has been acting as an advocate for managed change since it was established in 1992, as the
Continuing Care Conference. There have been several welcome developments in policy but substantial gaps
remain. As public expectations and patterns of demand continue to alter on the back of demographic
changes and technological and medical advances, so CCC will continue to challenge the status quo and
promote realisable alternative options.
2. Written Ministerial Statement, 9 December 2004
2.1 CCC broadly welcomes the Written Ministerial Statement by the Parliamentary Under-Secretary of
State for Health (Dr Stephen Ladyman) of 9 December 2004. A national consistent approach to assessment
for fully funded national health service continuing care is long overdue; its lack has been a source of great
unfairness and exclusion for older people.
2.2 Whilst all the current criteria may be fair and legal, there is little or no evidence or structured reporting
that they are being used in a systematic manner.
2.3 Most of the work by Strategic Health Authorities (SHAs) has been ensuring that Primary Care Trusts
(PCTs) undertake reviews of disputed claims for eligibility to fully funded care.
3. How the Changes Will Build on the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
3.1 It is not evident to CCC members that Health Authorities proactively seek eligible cases. Their
endeavours have been focussed on people who have claimed and initially been rejected. CCC does not
believe it is presently routine for SHAs to question whether individuals are eligible for fully funded care.
Therefore such assessments are largely a consequence of a specific request or of sporadic awareness.
3.2 One of CCC’s members reports, based on the evidence of many cases coming through the member’s
advice service, that assessments for continuing care appear often to arise through a consultant’s ad hoc
recommendation, rather than any systematic signposting and that, in some cases, the decision seems to be
based on views about the older person’s ability to self-fund.
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3.3 CCC also has concerns about an apparent lack of audit trails and public reporting regarding eligibility
considerations and decision making.
3.4 CCC continues to seek a national consistent approach to assessment as a means for improving the
present confusion and unfairness.
3.5 CCC has expressed serious concern that developing new tools will further delay the remedy of present
iniquities and uncertainties. It should now be possible to select an instrument that will provide reliable
assessments. The extensive international experience should be added to the pathfinder work of health and
social care bodies in the UK. CCC considers that the internationally-used Minimum Data Set (MDS) is fit
for the purpose and well established; furthermore, it could facilitate the joining up of health and social care
with and through the national programme for information technology.
3.6 It is wasteful, illogical and overly complex to maintain the separation of assessment for eligibility for
fully funded NHS continuing care and the assessment processes undertaken by PCTs to determine levels of
NHS continuing support in the form of the “Registered Nursing Care Contribution to Care” (RNCC).
3.7 Although we appreciate that the wider policy consideration does not come within the remit of the
Committee’s present Inquiry, we would urge the Committee to consider the benefits of a single assessment,
and the inevitable consequence of not pursuing such a policy—which is that people confronting care will
continue to undergo several assessments to determine diVering entitlements. This could be remedied by a
single assessment that determined varying levels of health support including fully funded care. Such an
assessment should encompass the complexity and unpredictability of the health condition and not just its
present intensity/ severity. This approach would also bring clarity to individual responsibilities for funding
personal care, enabling people to plan for their future and make choices, whether that be through insurance
mechanisms or supplemental payments from savings.
3.8 CCC draws specific attention to the lack of clarity in distinction between the higher band of
dependency determination for RNCC payment and for fully funded NHS care.
3.9 Regulation and audit of care would be greatly enhanced through clear assessment processes with
commissioners, regulators and policy makers being able to track trends and outcomes through the collation
of data which would generate information about activity and outcomes.
4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of
Patients Wrongly Denied NHS Funding for Their Long Term Care
4.1 CCC is well aware of cases that had been denied funding and that have been reviewed as a
consequence of the Health Service Ombudsman’s intervention and subsequent reviews. In addition, CCC
is concerned about a fundamental injustice to, and consequent exclusion from funding of, people who were
ineligible at the time of entry into care but who, through progressive disability, now meet the criteria. People
needing care are typically assessed at a single point in time. If found to be eligible for fully funded care they
are commonly reviewed to ensure continued eligibility. However, if a person is ineligible for fully funded
care at the point of entry, planned reassessment is exceptional rather than planned-for. The majority of older
people needing care do so as a consequence of disability arising from chronic progressive illness, and can be
reasonably predicted to meet eligibility criteria at some point between initial assessment and death. To
illustrate this point we describe two typical case scenarios:
— An individual may have a devastating event, such as a stroke, that leads to an irredeemable
dependency that justifies NHS funded long-term care.
— An individual may have Alzheimer’s disease that does not meet eligibility criteria but requires
continuous care for personal safety and well being. As this latter individual’s disease progresses
and their condition gradually deteriorates they will cross the eligibility threshold unseen.
4.2 Reassessment at prescribed intervals must form part of a policy of assessment. CCC calls for
assessment to be repeated in a structured manner to ensure that eligible people are able to receive services
according to their changing needs.
4.3 The prevailing dependency of people in Care Homes in England would strongly support the notion
that many people have been, and continue to be, excluded from this health service provision. CCC asks that
the Committee consider this in the context of the NSF for older people as well as the basic promise of the
NHS. As a further example, one of CCC’s members reports their anecdotal experience from a Care Home
of 28 beds. On reviewing the service users, the proprietor encouraged three residents/former residents and
their families to apply for retrospective review of their funding decisions (or lack of initial assessment). The
review related only to residents at the home at 2 April 2001. Of the three:
— One (deceased) has had a favourable decision made in her favour with repayment to family to
follow.
— One relative has not disclosed whether they will take up the suggestion that their father could be
eligible—he was not keen to seek redress, largely because his father had died and he expressed the
view that the “NHS is in enough trouble at present and could not aVord it!”
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— Another (mother still living) has had a decision turned down locally, the matter remains
unresolved.
5. What Further Developments are Required to Support the Implementation of a National
Framework
5.1 CCC encourages the Committee to support a statutory requirement for a standard assessment
measurement.
5.2 CCC observes that assessment and commissioning of the health service component of care is vested
in PCTs but that the regulation of care provision is the responsibility of the Commission for Social Care
Inspection (CSCI) and that, to date, the Healthcare Commission has not been active in scrutinising
assessment practices. This anomaly should be seen in the context of the burden of cases referred to the
Health Service Ombudsman. CCC recommends that consideration be given to the proposal that eligibility
practices and consequences are monitored, and required to be monitored, in a structured manner by one or
other of the regulators or through a joint venture.
5.3 The development of a national approach will require a programme of training and support for staV
carrying out the assessments to ensure competency and public confidence.
February 2005
APPENDIX 21
Memorandum by The Law Society (CC 35)
The Law Society is the professional body for solicitors in England and Wales. The Society regulates and
represents the solicitors’ profession, and has a public interest role in working for reform of the law.
We welcome the announcement of the inquiry into the long standing problems in relation to NHS funded
continuing care and the opportunity for submitting this paper to the Select Committee.
Summary
The Law Society is concerned that the recent announcement by Stephen Ladyman that a National
Framework (“the Framework”) is to be developed, fails to address the fundamental problems in the NHS
continuing care system.
Specifically the Framework will not address the core problems in relation to NHS continuing care if its
content is incorrect and not inline with the Coughlan judgment. Also, if the Registered Nurse Care
Contribution (RNCC) assessment tool is retained, the Framework will do nothing to correct the perception
that only people whose needs exceed the high band are eligible for NHS health care.
According to the Coughlan judgment, the boundary between health and social care is not one of policy,
but of law. Legally, there has been no material change in the scope of the NHS continuing health care
responsibilities since inception and no amendment to the primary statutory obligation (albeit that the duty
is now to be found in the consolidated 1977 NHS Act). However over the past decades, changes in the
provision of long term chronic health care services following the development of community care has created
confusion in relation to funding responsibilities and blurred the practical boundary between health and
social care.
The Law Society is concerned that health care has been redefined as social care without any primary
legislation or debate, with the eVect being that the state may seek payment for chronic and long term
health services.
We also believe that successive Governments have actively contributed to this confusion by issuing
incorrect circular guidance and failing to ensure that Health Authorities’ eligibility criteria and assessment
methods comply with the judgment of the Court of Appeal in the Coughlan case. This has resulted in many
vulnerable people and their families being forced to pay for health care which should be the responsibility
of the NHS and free at the point of delivery.
The judgment in Coughlan clearly establishes that where a person’s primary need is for health care, and
that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the
package. Contrary to Government guidance, social services authorities may only purchase nursing care in
strictly limited situations, in accordance with the judgment. Whilst much of the debate has concentrated on
nursing home placements, it must be recognised that eligibility for NHS funded care is not relevant to the
location in which that care is provided. Those people cared for in their own homes whose primary need is
for health care may also be eligible for NHS funded care.
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The Law Society further believes that the creation and development of the RNCC tool has proved to be
the most significant reason why health bodies have failed to properly appreciate their full NHS continuing
care responsibilities. It has replaced consideration of whether a person’s primary need is for health care with
an assumption that the only nursing for which a person cannot be forced to pay is registered nursing. We
believe that this has distorted the true legal responsibilities of the NHS as set out by the Court of Appeal
and led to widespread inequalities and injustice.
The Law Society believes that the eligibility criteria currently being operated are incompatible with the
Coughlan judgment. We are concerned that the criteria would result in people being eligible for NHS funded
care only if they fall within the “palliative care” category and are aware of cases where people are being
forced to pay for services which are clearly health services, such as kidney dialysis, artificial feeding, catheter
care, wound care and bladder washouts. This is based on the mistaken belief that chronic health care for
patients in a stable condition is no longer the responsibility of the NHS.
The Law Society believes that a national framework will only be of assistance if the following conditions
are met:
— The RNCC system is abolished.
— The Framework is one set of national eligibility criterion with a standard assessment method to
be applied by all Strategic Health Authorities, PCTs and NHS Trusts in conjunction with local
authority social services departments so that individuals whose primary need is a health need will
receive fully funded care no matter where or in what setting they live.
— The Framework should not make any distinction between general or specialist nursing care, as
both are nursing care arising from healthcare as opposed to social care needs.
— The Framework should clearly state that funding decisions should not place undue reliance upon
the predictability of a condition but should be based on whether the primary need of the patient
is healthcare, as well as the “ancillary/incidental” test set out in Coughlan.
— The Framework must properly address the health needs of people with mental health conditions.
— The Government should take proactive steps to ensure compliance.
Background History
Until the programme of closure of long stay hospital wards and the development of care in the
community, the division between health and social care responsibilities was relatively clear. Patients in a
long stay hospital ward were the funding responsibility of the NHS. Primary care services in the community,
such as nursing care, were not chargeable as they too were the responsibility of the NHS. Services provided
by social services were means tested.
The advent of community care in the 1970–90s crucially changed the location of the care provision for
the chronically ill. NHS facilities were removed for patients with continuing care needs, so that increasingly
the chronically ill were cared in non hospital settings.8
The implementation of the NHS and Community Care Act 1990 (NHSCCA) in April 1993 gave local
authority social services departments the responsibility for being the “gatekeepers” of access to services
(including nursing home care). Access to a residential care home or a nursing home in the community was
via an assessment of need under s.47 NHSCCA, where the lead assessing body was the local authority.
This led to a widely held misconception that as social services departments had become responsible for
assessing need and arranging placements in nursing homes, the funding responsibilities for nursing home
placements had correspondingly moved from the NHS to local authorities. This was, and remains, incorrect
and is a major barrier to a proper understanding of the respective funding responsibilities of the NHS and
local authority social services departments by practitioners in health and social care.
The Leeds Complaint
The first major challenge to this originated as a Health Service Commissioner’s complaint concerning a
patient who had been discharged from a neuro-surgical ward and whose wife had been forced to pay for his
continuing care in a private nursing home.9 The Health Service Commissioner considered that even though
the patient’s “condition had reached the stage where active treatment was no longer required . . . he was still
in need of substantial nursing care, which could not be provided at home and which would continue to be
needed for the rest of his life” and concluded that the exclusion by the health authority of responsibility in
such cases was maladministration.10
8
9
10
Harding, Meredith and Wistow “note that between 1983 and 1993 there was a 30% (17,000) reduction in the number of long
term geriatric and psychogeriatric NHS beds and the House of Commons Health Committee (2002) noted that between 1988
and 2001 there had been a loss of 50,600 such beds”.
Health Service Commissioner Second Report for Session 1993–94; Case No E62/93–94 (HMSO).
Sir William Reid (the then Commissioner) asserted “this patient was a highly dependent patient in hospital . . . and yet, when
he no longer needed care in an acute ward but manifestly still needed what the National Health Service is there to provide,
[the NHS bodies] regarded themselves as having no scope for continuing to discharge their responsibilities to him”.
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The Commissioner also took the exceptional step of having the report separately published11 and in
response, the government undertook to issue guidance, indicating:
If in the light of the guidance, some health authorities are found to have reduced their capacity to secure
continuing care too far—as clearly happened in the case dealt with by the Health Service Commissioner—
then they will have to take action to close the gap.12
The 1995 guidance—NHS Responsibilities for Meeting NHS Continuing Care Needs
In 1994 the Department of Health consulted on the proposed guidance but this draft was the subject of
intense criticism.13 The final 1995 guidance14 attempted to distinguish between “general” and “specialist”
nursing and health care, a distinction which is of crucial importance in understanding the way in which it
has been interpreted.
However, the 2002–03 Health Service Commissioner’s Report revealed15 that the 1995 guidance was
misapplied by many health authorities. The Report also indicates that the Department of Health took little
positive action to require health authorities to redraft their continuing care eligibility criteria.16
The Coughlan Judgment
The Coughlan17 case concerned a woman who had been left severely disabled following a road traYc
accident several years previously. She required general nursing care and was living in a purpose built long
stay hospital (in an individual flat). The dispute when the Health Authority decided to close the hospital,
stating that as a result of a “change in the law” arising from the 1995 guidance the NHS was no longer
responsible for chronic nursing care and was only responsible for specialist or acute healthcare for people
with unpredictable needs.
The Court of Appeal judgment confirmed that:
(a) Where a person’s primary need was for health care (in a nursing home setting, which was the
context in that case) the NHS was responsible for the full cost of the placement.
(b) The distinction between “specialist” and “general” nursing or health care in the 1995 guidance was
“elusive” and “idiosyncratic”. However, as mere guidance could not alter the statutory
responsibilities of the NHS there was no need to quash the guidance as being unlawful, although
it was “unhelpful”.
(c) It had been incorrect to define a person’s eligibility for NHS funded care on the basis of the
discipline of the nurse undertaking the task or the experience of the health care worker. The real
issue was the condition of the person concerned.
(d) The starting point is the NHS Act 1977 and only if the NHS is not responsible (ie the person’s
need is not primarily for health care), may consideration be given to whether social services may
be responsible for purchasing any nursing services under the National Assistance Act 1948.
(e) Social services could only purchase nursing care in very limited circumstances (and pass the cost
to the service user) for patients whose health care needs are:
(i)
merely incidental or ancillary to the provision of the accommodation which a local authority
is under a duty to provide to the category of persons to whom section 21 refers; and
(ii) of a nature which it can be expected that an authority whose primary responsibility is to
provide social services can be expected to provide, then they can be provided under section 21.
(f) Whether nursing was “merely incidental or ancillary” to the provision of the accommodation was
a question of level and type of nursing care required—the “quality and quantity” test.
(g) The Court considered that Ms Coughlan’s condition and that of the other two long stay residents
fell wholly within the responsibility of the NHS (ie that despite the chronic and stable nature of
their condition, social services were not permitted in law to purchase their care.)
11
12
13
14
15
16
17
Normally only an abbreviated selection of his reports is published twice yearly.
Virginia Bottomley, Secretary of State for Health, 4.11.94.
See for instance L. Clements (1994) “Shifting sands: the draft NHS continuing care guidance” in Community Care Journal
29.9.94 p 24–25.
LAC (95)5/HSG (95)8 “NHS Responsibilities for Meeting Continuing Health Care Needs”.
Second Report for Session 2002–03 NHS funding for long term care; Stationery OYce. HC 399.
(as she observes at para 21) “My enquiries so far have revealed one letter (in case E.814/00–01) sent out from a regional oYce
of the Department of Health to health authorities following the 1999 guidance, which could justifiably have been read as a
mandate to do the bare minimum”.
R v North and East Devon Health Authority ex p Coughlan [2000] 2 WLR 622: [2000] 3 All ER 850.
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The 1999 Guidance
Following the Coughlan judgment, the Department of Health issued follow up guidance in HSC 1999/180;
LAC (1999)30. This guidance stated that it was “interim guidance” and asked health and local authorities to
“satisfy themselves that their continuing” care policies were in line with the judgment.
It also gave a clear indication that further guidance would be issued “later this year” (at para 2) and many
health authorities postponed any significant review of their plans until the promised guidance had been
published. In the meantime, patients with similar and greater needs than Ms Coughlan continued to be
charged for their health care services.18
The Response to the Royal Commission on Long Term Care
The Government’s response to the 1999 Royal Commission report on long term care19 was long awaited
but did not accord with the judgment of the Court of Appeal. Instead of the anticipated reversal of the
previous position which had led to the Coughlan case and the development of standard national eligibility
criteria to ensure equality of access to health services, the Government accepted the minority view of the
Commission, which recommended that only certain nursing care should be funded by the National Health
Service and that “general” nursing and personal care would be chargeable.
S49 Health and Social Care Act 2001, the 2001 Guidance and “Free Nursing Care For All”
In July 2000, the Government produced its new National Health Service Plan and confirmed that “nursing
care in nursing homes will be fully funded by the NHS”. Work started on the new Health and Social Care Bill
to enable pooling of budgets, partnership working and changes to funding for nursing care in nursing homes.
S49 Health and Social Care Act 2001 defines the nursing care which cannot be purchased by local
authority social services departments.20 The eVect of s49 was to prohibit the purchase of high level
“registered nursing care” by social services authorities but it went no further. The Law Society believes that
the implementation of s49 together with the introduction of the Registered Nursing Care Contribution
(RNCC) assessment tool regarding “free nursing care” are not compatible with the Coughlan judgment.
On 1 October 2001 the Government announced “Free Nursing Care for All” stating:
“From today people currently living in nursing homes and paying for their own registered nursing
care will received free NHS funded nursing care . . . The nursing care provided will be divided into
three bands—£35, £70 and £110 per week. Based on current information it is anticipated that only
10% of people will fall into the £35 band and the remainder will be divided equally between the
two higher bands. If following the assessment people have needs above the highest band, they will
receive the care they need.”21
As noted above, the Government felt unable to accept the full recommendations of the 1999 Royal
Commission on long term care report and opted instead to fund only the registered nursing care costs of
residents in nursing homes.22 In England, Primary Care Trusts were charged with responsibility for deciding
the extent of this obligation, and the Department of Health issued guidance23 to explain how this should be
achieved. The guidance set out three bands of nursing care, while in contrast the Welsh Assembly opted for a
much simpler approach stating that that every resident would receive the same contribution from the health
authority, originally £100 per week.
The guidance set out the Registered Nursing Care Contribution (RNCC) assessment tool and three bands
for free nursing care24 (high, medium and low). The Law Society is concerned that the creation of the RNCC
and the eligibility criteria were not subject to Parliamentary scrutiny.
18
19
20
21
22
23
24
A report by the Royal College of Nursing in 1999 (“Rationing by Stealth”) asserted that the continuing care policies of over
90% of health authorities were as deficient as those of the health authority in the Coughlan case.
With respect to old age: The Royal Commission on Long-Term Care Cm 4192, London: The Stationery OYce.
S49 “Exclusion of nursing care from community care services” sets out the following:
(1) Nothing in the enactments relating to the provision of community care services shall authorise or require a local authority,
in or in connection with the provision of any services, to—
(a) provide for any person, or
(b) arrange for any person to be provided with, nursing care by a registered nurse.
(2) In this section “nursing care by a registered nurse” means any services provided by a registered nurse and involving—
(a) the provision of care, or
(b) the planning, supervision or delegation of the provision of care,
other than any services which, having regard to their nature and the circumstances in which they are provided, do not need
to be provided by a registered nurse.
DoH Press release reference 2001/0455.
Announced in The NHS Plan at paragraph 15.181 (Department of Health, July 2000.) and enacted as s49 Health and Social
Care Act, 2001.
HSC 2001/17: LAC (2001)26.
These are detailed in “NHS Funded Nursing Care Practice Guide & Workbook” Department of Health, August 2001 see
www.doh.gov.uk/jointunit/freenursingcare.
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We believe that the high level of support (ie the “high” band) has been set well above the level defined by
the Court of Appeal and this has caused considerable confusion amongst health authorities and trusts. Para
3.8 of the guidance describes the “high band” as follows:
3.8 People with high needs for registered nursing care will have complex needs that require
frequent mechanical, technical and/or therapeutic interventions. They will need frequent
intervention and re-assessment by a registered nurse throughout a 24 hour period, and their
physical/mental health state will be unstable and/or unpredictable.
We are concerned that this “high band” only triggers a PCT contribution liability of £110 per week (when
introduced). This will have a knock on eVect for people who are placed in either the medium or low bands
who despite having relatively high level health needs will not be provided with suYcient contributions to
fund their health care.
It should be noted that neither the patient who was the subject of the Leeds NHS Ombudsman complaint
nor Ms Coughlan meet these criteria. Indeed the Nurses Work Book which nurses use in determining the
band a person should be placed, gives an example of a person who should be entitled to the high band, which
bears great similarity to the condition of a nursing home resident considered in the Health Service
Commissioner’s report of February 2003 who, as a result of several strokes, had no speech or
comprehension; was unable to swallow and required feeding by PEG tube.25 The authority had rejected her
claim for continuing care funding and the Ombudsman found.
“It is clear from the information I have seen about Mrs N’s condition that she was extremely
dependent and required a high level of physical care: like Miss Coughlan, she was almost
completely immobile; and she was doubly incontinent. I have seen no evidence that she had
breathing diYculties as Miss Coughlan had; but she required PEG feeding, which Miss Coughlan
did not. She was unable to communicate verbally. I cannot see that any authority could reasonably
conclude that her need for nursing care was merely incidental or ancillary to the provision of
accommodation or of a nature one could expect Social Services to provide (paragraph 15). It seems
clear to me that she, like Miss Coughlan, needed services of a wholly diVerent kind. If the Health
Authority had had a reasonable policy, and applied it appropriately, they would have provided
NHS care for Mrs N. They failed to provide a service which it was their function to provide. I
uphold the complaint.”
The Law Society believes that patients in the high band of registered nursing care cannot lawfully have
their care purchased by the local authority. The primary need of such patients is for health care, and
according to the Coughlan judgment, the NHS is legally responsible for funding such a care package.
In addition, it is likely that most (if not all) patients assessed as falling within the “medium band” will also
be entitled to continuing care. Para 3.9 describes the medium band in the following terms:
3.9 People whose needs for registered nursing care are judged to be in the medium banding may
have multiple care needs. They will require the intervention of a registered nurse on at least a daily
basis, and may need access to a nurse at any time. However, their condition (including physical,
behavioural and psychosocial needs) is stable and predictable, and likely to remain so if treatment
and care regimes continue.
It is again of some concern that both Ms Coughlan and the patient who was the subject of the Leeds NHS
Ombudsman complaint would have diYculty qualifying for this band.
The Law Society was disappointed that the 2001 continuing care guidance was issued without proper
consultation in line with Cabinet OYce guidelines. We also disagree with its conclusion that the Coughlan
judgment merely confirmed the status quo and that little action was required following the judgment. The
guidance has been roundly criticised by the Health Service Commissioner, who argued (at Para 38) that its
defects have caused “injustice and hardship” to those (almost certainly numbering several thousand) who
have been compelled to pay for nursing care; nursing care that should have been provided free by the NHS.
We also believe that the creation and development of the RNCC tool has proved to be the most significant
reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities.
It has replaced consideration of whether a person’s primary need is for health care with an assumption that
the only nursing for which a person cannot be forced to pay is registered nursing. The Law Society believes
that this misrepresents the legal responsibilities of the NHS as provided by the Court of Appeal.
25
Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust Case No E.420/00–01.
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The Health Service Commissioner
In February 2003, the Health Service Commissioner published a Special Report “NHS Funding for the
Long Term Care of Elderly and Disabled People—HC399” as a result of serious concerns that Strategic
Health Authorities were continuing to devise and apply eligibility criteria which were too restrictive.
Importantly, the Report recommended that the Department of Health should take concerted action to
minimise variations in eligibility criteria and produce national guidance:
“The Department of Health should review the national guidance on eligibility for continuing NHS
health care, making it much clearer in new guidance the situations when the NHS must provide
funding and those where it is left to the discretion of NHS bodies locally. This guidance may need
to include detailed definitions of terms used and case examples of patterns of need likely to mean
NHS funding should be provided.”
The Ombudsman’s recommendation states that the Department should
“support and monitor the performance of authorities and primary care trusts in this work . . .
(including) . . . assessing whether, from 1996 to date, criteria being used were in line with the law
and guidance. Where they were not, the Department . . . need to co-ordinate eVort to remedy any
financial injustice to patients aVected.”
Further the Ombudsman recommended that the Department “be more proactive in checking that criteria
used in the future follow the guidance.”
Following publication of this Report, the Department of Health asked Strategic Health Authorities
(SHAs) to identify those people who may have been wrongly denied funding and to conduct reassessments,
which were to have been completed by the end of December 2003. Most complaints received by the
Commissioner were referred back to the SHAs for reassessment according to this process.
According to the Commissioner’s annual report for 2003–04, the volume of applications for reassessment
was far greater than anticipated and the Department of Health extended the deadline for dealing with them
to March 2004. However, by that time only 57% of the retrospective reviews had been undertaken (6,713
out of 11,724), which the Commissioner described as “disappointing” given the large numbers of people
aVected. The Commissioner also criticised the lack of support given by the Department of Health to SHAs
and Primary Care Trusts (PCTs) in undertaking the reviews. The Department estimated that £180 million
would be the cost of recompense to 31 March 2004 and the Health Minister Stephen Ladyman confirmed
in the House of Commons that 770 cases had resulted in compensation being payable.26
On 27 February 2004, the Continuing Care (National Health Service Responsibilities) Directions 2004
came into force, applying to all SHAs and PCTs in England. They include a definition of continuing care as:
“care provided over an extended period of time to a person aged 18 or over to meet physical or
mental health needs which have arisen as a result of disability, illness or accident”
The Directions provide that by 30 April 2004 each SHA must have developed a single set of eligibility
criteria to be applied by all PCTs within the area. Before establishing or revising the criteria the SHA must
take such steps as are reasonable to obtain the agreement of the PCTs and all local authorities in the
relevant area.
These Directions, along with the Delayed Discharge Directions, place a qualified obligation on the PCT
to undertake an assessment of the person’s eligibility for NHS funded continuing care “where it appears
there may be a need for such services” prior to the issue of an assessment notice regarding delayed discharge.
Further publicity was generated by the Ombudsman’s report into the Pointon27 case, which concerned the
refusal of a PCT to provide continuing care funding in a patient’s own home as opposed to a nursing home
or hospital. This case involved a man with Alzheimer’s Disease who required continuing care and considered
the application of the criteria by way of an assessment tool which focused on physical care rather than the
person’s psychological condition. A recommendation was made that
“SHAs should review their eligibility criteria to ensure that the criteria for funding at home, and
the recognition of patients’ psychological as well as physical needs, are clearly defined.”
The Law Society is concerned by the diVerent approach to NHS funded continuing care regarding mental,
as opposed to physical health care, and that little action appears to have been taken to implement the
recommendation made in Pointon. We believe that people suVering from mental distress, particularly with
dementia which may be controlled within a nursing home environment or in their own home, are
discriminated against as far as eligibility for continuing care is concerned. It is more diYcult for such persons
to establish that their primary need is for health, as opposed to social care, than residents whose treatments
involve physical health care interventions.
26
27
22 June 2004.
Case No E.22/02–03 Complaint against: the former Cambidgeshire Health Authority and South Cambridgeshire PCT.
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The most recent report of the Health Service Commissioner28 was published shortly after the
announcement from Stephen Ladyman in December 2004 and again describes a continuing picture of chaos,
complex procedures, delays, and injustice among those seeking to establish their eligibility for continuing
care.
The Announcement of the National Framework for NHS Funded Continuing Care
The Law Society is concerned that the recent announcement by Stephen Ladyman in December 2004 that
a national framework is to be developed, does not address the fundamental issues.
The fundamental problem is that the Government has not implemented the judgment in the Coughlan
case. We are particularly concerned that the conditions described in the RNCC bands bear no resemblance
to the thresholds for entitlement to NHS funded continuing care as laid down by the Court of Appeal.
Unless the legal position is properly understood and consistently applied, the problems will continue and
any framework which is based on anything less than the Coughlan judgment, will create further inequality.
The Law Society believes that if the RNCC system of “free nursing care” is retained, a national framework
will do nothing to correct the perception created by the RNCC system that only those people whose needs
exceed the high band are eligible for NHS fully funded care. We believe that people in the high and medium
band are legally eligible for NHS funded continuing care. It must be remembered that admissions to nursing
homes are governed by strict criteria applied by local authority social services departments following an
assessment of need. Only those patients who cannot be cared for elsewhere are admitted to nursing homes
(unless the social services department is not involved, which is unusual).
The establishment of a framework will not resolve the issue of inconsistencies between SHAs while
diVerent eligibility criteria for diVerent SHA areas are permitted. The NHS is a national service and
therefore a person with a particular condition should be able to approach any SHA in the country and have
the same right to health services. Allowing diVerent areas to develop their own criteria leads to inequality
on a postcode basis and allowing diVerent PCTs and NHS Trusts to develop their own “assessment tools”
will continue the diVerential treatment of people in diVerent areas of the country.
February 2005
APPENDIX 22
Memorandum by Ms Marion Shoard (CC 36)
This evidence is submitted by Marion Shoard. I have experience of the Continuing Care system through
my mother, who lived in a Continuing Care establishment in east Kent for four-and-three-quarters years
until her death in January 2005. My knowledge of the Continuing Care system also arises from the research
I carried out for my 640-page book published in 2004 A Survival Guide to Later Life (Constable and
Robinson).
I welcome the statement by the Minister announcing that a national framework setting out criteria for
assessing eligibility for Continuing Care will be drawn up. I am particularly concerned about the eligibility
criteria as far as people with dementia are concerned, and firmly believe that they should be consistent across
England but also reflect the prime purpose of Continuing Care provision—to support people with very great
heath care needs.
Eligibility Criteria
In 2004 my mother’s health trust, Canterbury and Coastal Primary Care Trust, announced that it was
going to reassess her for her Continuing Care. I assumed that the criteria that it would use would reflect the
Department of Health’s guidance on the purpose of Continuing Care, in other words, Annex C of circular
HSC 2001/015: LAC (2001) 17, Continuing Care: NHS and Local Councils’ Responsibilities, which sets out
the “key issues to consider when establishing continuing NHS health care eligibility criteria”. However, I
found that the PCT and its overseeing Strategic Health Authority had developed sets of Continuing Care
criteria which diVer markedly from the purpose of Continuing Care as set out in HSC 2001/015: LAC (2001)
17, Annex C.
Apart from people who are in the final stages of a terminal illness or likely to die in the near future, Annex
C says that Continuing Care should be provided because “The nature or complexity or intensity or
unpredictability of the individual’s health care needs (and any combination of these needs) requires regular
supervision by a member of the NHS multidisciplinary team, such as the consultant, palliative care, therapy
or other NHS member of the team”. However, both my late mother’s Strategic Health Authority (Kent and
Medway) and her primary care trust (Canterbury and Coastal) put a great deal of emphasis on those whose
symptoms happen to involve disruptive, aggressive or non-compliant behaviour. Thus in its “Mental Health
28
“NHS Funding for Long Term Care: Follow Up Report” HC144—16 December 2004.
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Criteria”, the Kent and Medway Strategic Health Authority states that a person must meet at least one
criterion in each of three categories, A, B and C. Three of the five criteria in A relate to disruptive, aggressive
or non-compliant behaviour, as do two of the three under B and two of the four in C. For example, category
B says that the person must either pose “A serious risk to themselves or others, or serious self-neglect, as a
consequence of severe and enduring mental illness or personality disorder”, or exhibit “challenging
behaviour, defined as behaviour of such intensity, frequency or duration that the physical safety of the
person is likely to be placed in jeopardy, or behaviour which is likely to seriously limit or deny access to and
use of ordinary facilities”, or to have “serious physical frailty”.
Yet patients who lash out, or are disruptive, unpleasant, aggressive or utter profanities will not necessarily
be those with the greatest health care needs. They may well be those whom health and social services
authorities find most diYcult to place in private care homes, but that is a very diVerent matter from the
objectives for Continuing Care as set out in Annex C of circular HSC 2001/015: LAC (2001) 17.
This emphasis on people who are diYcult to handle rather than simply seriously ill is carried through in
the eligibility framework drawn up by the Canterbury and Coastal Primary Care Trust. In a diagram headed
“Areas of Need/Degree of Severity/Intensity/Stability”, the oYcials assessing people for eligibility for
Continuing Care are invited to tick a box in one of a number of categories. Several of these categories are
restricted to aggressive, disruptive, unpleasant or challenging behaviour—“challenging behaviour/activity”
and “evidenced aggression” and “risk to self or others”—so that those who do not exhibit such symptoms
would score nil in these areas. But the emphasis on disruptive people also bears fruit in the sub-divisions
within several of the other categories. Thus in the category “personal care”, the spectrum of choices oVered,
in five divisions, does not span the intensity or extent of a person’s personal care needs arising from illness
or disability: rather it spans the extent to which the patient when receiving help, whether it is a little or a
great deal, is resistant or compliant. The same obtains for another category, “feeding”: what is measured is
not the degree of assistance needed but whether the patient accepts help or objects to receiving help. My
mother was not at all disruptive, aggressive or non-compliant, but had massive health care needs arising
from Alzheimer’s disease. Had she lived, she may well have lost her bed in favour of a person who was less
poorly but disruptive.
Had my mother managed to hang on to her bed, she would have faced another hurdle which also finds
no place in HSC 2001/015: LAC (2001) 17—reassessment every three months.
Three-monthly reassessment may perhaps be appropriate for patients who are recovering from some
physical illness or trauma. Dementia does not fall into this category. A person with dementia is assessed as
needing Continuing Care on account of the nature, complexity, intensity or unpredictability of their mental
health needs is likely to be very poorly indeed. They are not going to recover. The diVerences in suVering
from dementia arise from diVerences between patients, not substantial changes over time in the impact of
the condition on the individual. My own mother, for example, was in a state of more or less continuous
anxiety and distress for six years; I did not witness any diminution in her health care needs at all. But the
Continuing Care facility where she lived for the last four-and-three-quarters years of her life became her
“home”: even if she could not name the institution or the people who looked after her, in some sense she
became familiar with that physical space and the particular human voices, routines of care and method of
caring she experienced there. Had her Continuing Care been withdrawn after reassessment, she would have
lost her “home”. Or, perhaps she might have been granted Continuing Care for three months, then been
refused it and moved out of her facility, then at some later stage moved back in again. It is hard to think of
any state of aVairs more likely to increase the suVering of the people involved and of their families than the
uncertainty aVorded by three-monthly reassessments. It is widely accepted that moving any person with
dementia often makes their condition worse. There is also substantial research evidence to show that
relocating any institutionalized elderly people to a new residence can have a dramatic eVect on their mental
health and life expectancy. The policy thus seems to me cruel in the extreme but also unrealistic because it
is bound to become swamped in lengthy and expensive appeals. I do not disagree that people receiving
Continuing Care should undergo reassessment, but the period between reassessments needs to be carefully
thought out in relation to the type of patient involved.
I urge the committee to recommend that the government’s new national framework on Continuing Care
should make it absolutely clear that the purposes of Continuing Care are those set out in circular HSC 2001/
015: LAC (2001) 17. I do not believe that Kent and Medway is an isolated case. Thus the eligibility criteria
of Bedfordshire and Hertfordshire Strategic Health Authority, for example, include provision for threemonthly reassessments and devote one of their three categories of candidates for Continuing Care to people
exhibiting “Highly Challenging Behaviour”.
I also urge the committee to consider aspects of Continuing Care other than eligibility in putting forward
their recommendations to government. These are as follows:
Choice
I believe that if a person is granted Continuing Care and that care is to be received in an institution—a
Continuing Care facility run by a health trust or a care home with which the trust has a contract—then the
person to receive care, or their representative if they lack mental capacity, should be consulted about where
the person is to be placed. When my mother was first awarded Continuing Care in 2000, I was simply
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informed of the name and address of the facility where that care would be delivered: I was not given any
information about the range of possible venues, still less any choice over which of these would be my mother’s
future home. This denial of choice flies in the face of the government’s current focus on the provision of choice
in health care. I cannot see why a person granted Continuing Care cannot be oVered choice of location in
the same way that, if a person is to go into a care home and social services is to pay the fees because the
person’s own financial resources fall below the £20,000 threshold, then it must allow the person involved a
choice of home, as set out in the Direction of Choice circular (Department of Health (1992), The National
Assistance Act (Choice of Accommodation) Directions, Local Authority Circular (2) 27).
This denial of choice in the location where Continuing Care will be taken also reflects a failure to
acknowledge that the places where people receive Continuing Care become their homes. Many elderly
people receiving Continuing Care have dementia and, if such people receive suYcient food and liquid and
an equable temperature, they can live for many years, as did many of the residents of my mother’s
Continuing Care facility. However, NHS Continuing Care units (unless they fall within a nursing care home)
are treated as “health” rather than “social” care and as a result often lack the attention paid in good care
homes to the provision of activities such as gardening, crafts, dance, games and short outings which can
make the lives of residents more interesting and rewarding: in their absence, every day is an almost exact
replica of the day before. Attention to such matters would also make Continuing Care establishments more
interesting and attractive for visitors. Encouraging visiting by family and friends is particularly important
in the field of dementia. People with dementia benefit greatly from one-to-one reassurance. Even in
Continuing Care establishments, staV are unlikely to have suYcient time to engage in this contact for as long
as is desirable; relatives and friends may have much more time at their disposal. Furthermore, they can
provide a vital link with the past for a person with dementia and in this way help to reduce or at least mitigate
the disorientation caused by progressive loss of memory, language and cognitive powers.
NHS Continuing Care units have been told in a letter from the Department of Health that they should
take note of the national minimum standards for care homes and themselves review their services to ensure
that they meet them. In a letter concerning the Care Standards Act 2000: National Minimum Standards—
Care Homes for Older People, CI (2001) 4, March 2001, the Chief Inspector, Social Services Inspectorate of
the Department of Health stated: “Local authorities and independent providers of care homes and any NHS
trusts which provide residential care homes should take note of these standards and review their services so
that they are prepared to meet these standards when they are implemented”.
The committee may care to consider whether this instruction should be included in new national guidance
on Continuing Care, whether it forms part of a new national framework or comes in some other form. They
may care to bear in mind that NHS Continuing Care units do not receive inspections or even visits from the
Commission for Social Care and Inspection in the way that care homes do. Such visits to Continuing Care
facilities as may be made by the Commission for Health Improvement as part of its rolling programme of
inspecting health trusts involve a diVerent approach from the inspection of care homes. CHI oYcials are
unlikely to pay much attention to the extent to which such facilities provide acceptable “home”
environments, unlike the announced and unannounced CSCI inspections of care homes in which inspectors
examine not only the physical care of residents, but also their emotional care and whether they are given the
opportunity to lead interesting lives. Furthermore, the CSCI can require instant change if it is concerned
about what it discovers. The CHI has no similar powers of enforcement.
Some people receive Continuing Care in their own or a relative’s home. They are also denied choice in a
diVerent area. While people receiving community care services through social services have the option of
managing their services themselves under the Direct Payments System, (and indeed social services
departments are now legally required to oVer the Direct Payments option), people receiving Continuing
Care at home are told by health authorities that it is not possible to receive that care through Direct
Payments. The Direct Payments system allows the user choice over who provides a service, the nature of
that service and how and when it is provided; I believe that people with Continuing Care (or their
representatives if they lack mental capacity) should have this choice just like those whose needs are less
intense.
This state of aVairs has significant repercussions. People who receive Continuing Care at home often have
a fitter person, such as a partner, living with them who acts as their de facto carer as they are on hand for
24 hours a day, including the many, often extended periods, such as night-time, when care workers and
district nurses are absent. Yet in one case I know well this de facto carer is not classed as a “carer” as he
would be if the cared-for person (his wife) received community care services administered by social services.
As a result, he is not entitled to carers’ financial benefits like Carer’s Allowance and the Carer Premium. De
facto carers like this elderly man may well not receive a carer’s assessment as they would were community
care services involved. Finally, and perhaps most importantly, the pretence that visiting care workers and
nurses can provide all the care that is needed to deliver Continuing Care at home means that these de facto
carers are likely to receive little, if any, training. They deserve proper training, both in the care of the caredfor person and in the steps they can take to ensure that caring does not jeopardise their own health. A
fortnight’s training would seem to me to be a minimum.
February 2005
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APPENDIX 23
Memorandum by the Royal College of Physicians (CC 37)
The Royal College of Physicians is grateful for the opportunity to submit evidence for the above Inquiry.
On this occasion we do not wish to submit any evidence of our own. However, we have seen the evidence
submitted to the Committee by the British Geriatrics Society and are writing to endorse their comments,
particularly their recommendations.
February 2005
APPENDIX 24
Memorandum by the Commission for Social Care Inspection (CSCI) (CC 38)
1. The Commission for Social Care Inspection (CSCI)
1.1 The Commission for Social Care Inspection [CSCI] was set up in April 2004. Its main purpose is to
provide a clear, independent assessment of the state of social care services in England. CSCI brings together
into one body the social care components of the work of the National Care Standards Commission, the
Social Services Inspectorate [SSI] and the SSI/Audit Commission Joint Review Team. As such, CSCI
combines inspection, review, performance and regulatory functions across the range of social care services
in the public and independent sectors.
1.2 CSCI exists both to promote improvement in the quality of social care and to ensure public money
is being well spent. It works alongside councils and service providers, supporting and informing eVorts to
deliver better outcomes for people who need and rely on services to enhance their lives. CSCI aims to
acknowledge good practice but will also use its intervention powers where it finds unacceptable standards.
2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on
9 December 2004
2.1 The Commission for Social Care Inspection (CSCI) believes that a national eligibility framework for
the receipt of continuing care consistently applied, is essential.
2.2 However, having a national framework is not, in itself, a guarantee that people will experience greater
consistency in the way their individual circumstances are dealt with.
2.3 A national framework may not result in criteria being consistently applied, since health and social
care systems need to take account of local circumstances. We aware thst in some palces even where councils
and their NHS partners have entered into a formal partnership agreement under S.31 Health Act 1999, they
are sometimes unable to resolve funding disputes.
2.4 Evidence collected by the Social Services Inspectorate (SSI) whose functions CSCI inherited in 2004
indicates that, despite the 1999 Coughlan judgment, there is need for better understanding of the
arrangements for continuing care between health and social services.
2.5 The lack of a co-ordinated approach impacts adversely on outcomes for service users, especially in
regards for people leaving hospital with significant health problems.
2.6 In CSCI’s “Leaving Hospital—the price of delays” report over a third of the case sample could not
recall the details of any information given to them while in hospital. These diYculties are compounded for
patients developing dementia or who have particular language and cultural needs.
3. How the Changes will Build on the Work Already Undertaken by Strategic Health
Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies
3.1 As an NHS area of activity, CSCI does not have a specific remit to assess performance in relation to
continuing care. However, information about how disputes over eligibility criteria and provision of
inappropriate services aVect people who use services can be brought to our attention through our service
inspection and performance assessment functions and through special studies. We also monitor
development of local health and social care partnership arrangements.
3.2 The duty of partnership between CSCI and the Healthcare Commission set out in the Health and
Social Care (Community Health and Standards) Act 2003 gives us the opportunity to assess the impact on
individuals who move through social care and health systems. It will enable us to get a better overall picture,
therefore, of how far local partnerships are appropriately taking account of local needs to promote the well
being of local people.
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3.3 We expect that, by looking across systems rather than focusing just on organisational performance,
our joint inspection activity with the Healthcare Commission and Audit Commission on Older People’s
services will ensure issues in relation to continuing care will be able to be identified more easily.
3.4 CSCI also regulates some NHS continuing care services—eg care homes with nursing and domiciliary
care services and so is uniquely placed to pick up information about how this is working.
4. What Further Developments are Required to Support the Implementation of a National
Framework
4.1 CSCI believes that drawing upon people’s experience is key to understanding how well complex
systems are working to address their needs. This is particularly important for people who use both health
and social care services as they are often in circumstances which makes it diYcult to ensure their interests
are represented. People with social care needs may experience multiple forms of disadvantage and face
barriers to inclusion—including access to health and social care services. To promote good health and well
being for people who use social care, therefore, requires a broad perspective to understand their experience
in the context of the whole system.
4.2 There are a number of challenges and dilemmas to be faced to ensure that the perspective of people
using health and social care services is adequately represented in assessments and that information about
these are fully accessible to the wider public.
4.3 Concerns about continuing care are not solely in relation to application of eligibility criteria. In our
Leaving Hospital study issues emerged about quality and consistency of assessment—particularly multidisciplinary assessment—appropriateness of provision and supply to meet changing needs. For example, in
one of the sites, 15% (3/10) of the people in our case sample were discharged from hospital into continuing
care. All three were from black and minority ethnic groups; one was assessed as requiring EMI care. It is
important that social care and health systems plan appropriately and commission services to meet changing
demographic needs.
4.4 In some councils around a third of people requiring social services support on discharge are making
life changing decisions from their hospital bed about where they were going to live in future.
4.5 It is important to note that continuing care in not just about institutional care and that a range of
services like domiciliary care services should be available to these people. Care and support needs to be
holistic and in line with users’ preferences.
“I remember being told they had done all they could for me and it was best for me to go in a nursing home.
They said it was for me to decide but with the drugs I was on I was in no fit state to do so.”
— A patient discharged to a nursing home, who, prior to hospital admission, lived in sheltered
accommodation.
“They tried to talk me into a home but I was having none of it.”
— The view of one older person.
4.6 It is also important that the health needs of the 30% of people who are self-funders are met and that
if these needs change people are not shunted between health and social care services.
4.7 Attention needs to encompass carers and supporters who themselves may present challenges to
services eg carers who have a learning disability.
4.8 Pressures to free up acute beds should not, in turn, pressurise older people into making long-term
decisions about where they live. People are at their most vulnerable in hospital, information to guide
decision making is not easily absorbed, and the potential for improvement can change markedly. Mentally
confused people and people with complex needs were found to be most at risk.
4.9 Evidence from CSCI’s Leaving Hospital report into delayed discharges indicates that joint working
between health and social care can be achieved and that the divisiveness that some feared does not seem to
have materialised. Managers across successful services talked in terms of “our problem” as opposed to “your
problem”.
February 2005
ISBN 0-215-02460-5
9 780215 024602
Printed in the United Kingdom by The Stationery OYce Limited
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