RNIB Group response to the Department of Health consultation on a
new NHS outcomes framework (Liberating the NHS: Transparency
in outcomes – a framework for the NHS)
About us
1.
RNIB Group is an association of RNIB and Action for Blind People.
We are pleased to have the opportunity to respond to this consultation.
2.
RNIB is a membership organisation with over 10,000 members who
are blind, partially sighted or the friends and family of people with sight
loss. 80 per cent of our Trustees and Assembly Members are blind or
partially sighted. We encourage members to be involved in our work and
regularly consult with them on Government policy and their ideas for
change.
3.
As a campaigning organisation of blind and partially sighted people,
we fight for the rights of people with sight loss in each of the UK’s
countries.
4.
During the next four years we want to tackle the isolation of sight
loss by focusing on three clear priorities:
1. Stopping people losing their sight unnecessarily.
2. Supporting blind and partially sighted people to live independent
lives; and
3. Creating a society that is inclusive of blind and partially sighted
people.
5.
Action for Blind People is one of the largest charities in the UK
providing confidential support for blind and partially sighted people in all
aspects of their lives. Action ensures that visually impaired people
receive help with anything from finding a job. Applying for benefits,
housing issues, aids and adaptations, holiday breaks or information on
local services.
General comments
6.
We recognise that the Framework is driven by the aim of reducing
avoidable mortality. There is a case to use available data to commission
outcomes for reducing or mitigating some forms of life-limiting sensory or
physical disability which could have a bearing on the programmes of
other government departments such as Work and Pensions. This will be
taken up in further comments below.
7.
We welcome the continuing move towards the more outcomefocused approach that was part of the World Class Commissioning
agenda and the focus on encouraging integrated care and joint working
between the NHS, public health and social services. We particularly
welcome the development of Quality Standards to drive up the quality of
care spanning the whole patient pathway from diagnosis to transition to
social care where necessary.
8.
However, we are concerned that the expectation on NICE to
produce 150 Quality Standards within five years will result in a mere rewriting of existing NICE guidelines without a proper chance to review
evidence and that in areas where no NICE clinical guidelines exist (much
of eye care except for glaucoma and diabetic retinopathy) Quality
Standards will be developed only towards the end of the five year period
and efforts to improve quality of care in these disease areas will be
undermined. In other disease areas the continued use of vital signs
indicators will help with the transition to the new system. However, this is
not the case for eye health. The lack of vital signs indicators in relation to
eye health and particularly the leading cause of sight loss (age-related
macular degeneration) is a matter of concern and urgent work is
therefore needed to develop Quality Standards on eye disease not
currently covered by NICE guidelines. Ideally, we would like to see
additional disease specific Quality Standards for age-related macular
degeneration and cataracts. In addition, we are calling for a generic
Quality Standard for Ophthalmology services covering primary and
secondary care and the increased use of shared care schemes to
address capacity issues in hospital eye clinics.
9.
Finally, we would urge the Department of Health to clarify the
process for stakeholder input into the topic selection for the development
of Quality Standards. At present, the NHS Quality Board seems to be
working in isolation and stakeholders do not seem to be in a position to
influence priority setting. We understand that work is underway to
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address these issues. We believe strongly that these process issues
should be resolved before further topics are referred to NICE.
10. We further ask more generally for the connection between the
outcomes framework and NICE’s extended remit to be spelt out in more
detail for the benefit of the new NHS commissioning board and the GP
Commissioning Consortia, but also other stakeholders.
Specific consultation questions
1. Do you agree with the key principles which underpin the
development of the NHS Outcomes Framework?
11. We agree with most of the general principles but would question to
what extent international comparability should be a significant driver.
While it is useful to have benchmarks the focus should be on what is
realistic and achievable in the UK, and in particular on addressing the
issue of health inequalities. We agree that the outcomes framework
needs to evolve over time. However, it will be important to manage the
evolution of the system carefully to ensure that existing and new outcome
measures are given sufficient time to be applied and evaluated before
they are replaced by others. Constant change should be avoided to
ensure that trends based on the measures can be analysed or else it will
be impossible to track quality improvements.
12. Also, the framework is too focused on being reactive rather than
being preventative. For the most efficient integrated care approach it is
important to consider preventative action such as early intervention and
prevention of hospitalisation and ensure that the framework compliments
the public health framework.
2. Are there any other principles which should be considered?
13. We welcome the focus on tackling health inequalities and would
like to emphasise that this should not be only in relation to mortality but
also in relation to morbidity. For instance, we are aware of significant
health inequalities in relation to glaucoma (late presentation being linked
to deprivation) and diabetic retinopathy screening (screening take-up
being significantly lower in areas with high minority ethnic populations
than in neighbouring areas with primarily white populations.
14. An important principle that should be mentioned in this context is
the principle of equal access to new treatments, particularly those that
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have been approved by NICE as being cost-effective. Failure to establish
this as a principle will increase the risk of unjustified post-code lottery
prescribing, and by extension people on low income experiencing worse
health outcomes because they cannot afford private treatment.
3. How can we ensure that the NHS Outcomes Framework will
deliver more equitable outcomes and contribute to a reduction in
health inequalities?
15. The proposed framework appears to provide levers to improve the
quality of care that patients receive. However, on its own it may not help
to close the growing gap in health outcomes between different population
groups. Improved care will benefit all users of NHS services, i.e. those
that access the system. They will not benefit those from deprived areas
who present late for treatment or not at all. This is where joint working
between health, public health, social care and other areas is crucial and
joint strategic needs assessments will play an important role in identifying
gaps and directing resources towards bridging them.
16. Ensuring consistency in measurement and clear accountability on
those failing to meet standards will be crucial.
17. Sharing best practice can be a valuable tool in tackling health
inequalities and we would welcome proposals to introduce a formal
process for this.
4. How can we ensure that where outcomes require integrated care
across the NHS, public health and/or social care services, this
happens?
18. The payment mechanisms and incentive schemes that will be
developed by the NHS Commissioning Board should contain incentives
for joint working. Incentives for joint budgeting between health and social
care should be developed because separate budgets are a major barrier
to increased funding for prevention and to a seamless patient journey
between health and social care.
19. In our area of expertise (supporting people with sight-threatening
disease and sight loss) we have robust evidence that patients who
develop a visual impairment often do not receive the level of support that
would allow them to cope with their impairment and continue to live
independentlyi. This is one reason why the costs of informal care for
people with sight loss in the UK amounted to £2 billion in 2008ii.
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20. Yet there is good scope for improved integration. Optometrists
report on sight test numbers to the Business Services Agency under their
NHS contract. Local Authority social service or adult and community
service departments place people on the register for sight or severe sight
impairment on recommendation from a hospital consultant
ophthalmologist. These arrangements provide a basis for improved,
integrated services, in which the GP commissioning role needs to be
clarified.
21. Roles of all stakeholders should be clearly defined with joint
objectives across these remits to encourage effective joint working.
Caregivers play an important role in bridging the gap between health and
social care and should be included in the framework.
5. Do you agree with the five outcome domains that are proposed in
Figure 1 as making up the NHS Outcomes Framework?
22. We agree with the different domains but would like to either extend
the first domain or add an additional domain to cover the prevention of
long-term conditions. With a growing elderly population it is equally
important to prevent premature death, as it is to prevent people from
developing long-term conditions. In some disease areas these two
prevention angles (mortality and morbidity) overlap; for instance in
cancer which is increasingly becoming a long-term condition. However, in
other areas the impact of a long-term condition on a person’s quality of
life will be drastic and while it may not lead to premature death the costs
to the health system and society are often considerable. People in
deprived areas are also much more likely to develop long-term conditions
so this is a key concern when it comes to tackling health inequalities. We
therefore propose an amended domain name: Preventing people from
developing long-term conditions and from dying prematurely.
Alternatively, there could be an additional domain: Preventing people
from developing long-term conditions or preventing people from
developing disabilities. To give a concrete example: someone who
develops glaucoma, is identified early and receives ongoing adequate
treatment is very unlikely to be registered blind or partially sighted since
the treatment usually keeps the condition in check. Equally, people with
wet age-related macular degeneration who present for treatment before
having lost significant sight have an excellent chance of retaining their
sight. This aspect is not entirely covered by the second domain since it is
not about the quality of life of people with long-term conditions; it is about
access to and quality of care to prevent disability.
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6. Do they appropriately cover the range of healthcare outcomes
that the NHS is responsible for delivering to patients?
23. At present PCTs (and therefore the NHS) are involved in
awareness raising activities and case finding, which are crucial to
reducing health inequalities. If this responsibility is being moved to the
Public Health Service then the performance framework for that service
needs to ensure that providers address health inequalities by raising
awareness of diseases and by improving access to primary care1.
Identifying people who do not realise that they have a disease is crucial
to prevent chronic illness and avoidable disability, such as most sight
loss, and premature death.
24. So under the present framework, the principles do not cover the
range of healthcare outcomes that the NHS is responsible for delivering
to patients (including those who don’t know they are patients). Even if the
prevention aspect is covered by the forthcoming plans for the Public
Health Service the Outcomes Framework needs to contain references to
prevention and mechanisms to ensure that the Public Health Service, the
NHS and Social Care are closely interlinked.
25. More globally, the NHS has a key role in the primary and
secondary prevention, treatment and rehabilitation of sight loss working
with other agencies. The framework should capture that responsibility.
7. Does the proposed structure of the NHS Outcomes framework
under each domain seem sensible?
26. Yes, although until it is put into practice it will be difficult to
determine whether it may turn out to be too complex, particularly with
supporting Quality Standards crossing over into different domains.
27. More clarity is required regarding the implementation of Quality
Standards and whether there will be a hierarchy of standards with some
being mandatory and others constituting a menu from which GP
Commissioners can choose in line with their local priorities. This will then
largely determine how Quality Standards will be enforced and whether
they will be given sufficient weight to improve service delivery.
1
For instance, social deprivation is associated with later presentation of
glaucoma (Fraser et al. 2001).
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Domain 1: Preventing people from dying prematurely
1. Is ‘mortality amenable to healthcare’ an appropriate overarching
outcome indicator to use for this domain? Are there any others that
should be considered?
28. If our argument is accepted that the first domain should not focus
entirely on prevention of premature death, then the overarching indicator
should reflect that. An additional indicator could be ‘disability amenable to
healthcare’ to measure whether the NHS is reducing the incidence of
disability in areas where it can make a difference.
29. From our point of view, the aim is to reduce the number of new
entries to the register for sight impairment particularly for diagnoses
mentioned above where onset or further deterioration are preventable.
This headline data is already available. Sight test numbers are also
known and the aim is to increase numbers. We support the collection of
more detailed data under GP consortia contracts with specialist hospital
services or under the NHS Commissioning Board contract for General
Optical Services linking activities with patient outcomes. The key data in
the selected diagnoses is visual acuity (e.g. 6 over 60 indicates severe
sight impairment and links to eligibility for elements of disability living
allowance) and field of vision measured as the number of degrees of
useable sight out of the normal 180 degree arc in each eye). If numbers
deteriorating below a set benchmark could be reduced then that would
represent a positive in terms of reducing ill-health and life-limiting long
term sight loss and disability. This would be informed by the NICE
evidence research.
2. Do you think this is an appropriate way to select improvement
areas in this domain?
30. For mortality this method seems appropriate. Similar estimates of
rates of disability from major diseases could be used to decide on
improvement areas if the overarching outcome indicator was amended to
include preventable disability. (See WHO report on burden of disease,
2004)iii
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3. Does the NHS Outcomes Framework take sufficient account of
avoidable mortality in older people as proposed?
31.
Not our area of expertise.
4. If not, what would be a suitable outcome indicator to address this
issue?
32. Avoidable mortality is not our area of expertise. However, we would
like to highlight that sight loss is a causal factor in avoidable falls, which
account for a significant proportion of emergency hospital admissions
and mortality among older people. We would like to see more recognition
of the fact that sight loss is an independent predictor for falls costing the
health services approximately £25 million in 2008. Addressing sight loss
in older people should therefore be a key factor in any falls prevention
strategy.
5. Are either of these appropriate areas of focus for mortality in
children? Should anything else be considered?
33.
Not our area of expertise.
Domain 2: Enhancing quality of life for people with long-term
conditions
1. Are either of these appropriate overarching outcome indicators
for this domain? Are there any other outcome indicators that should
be considered?
34. Both of these indicators seem appropriate. It would be best not to
have to choose between them since they measure slightly different
aspects of long-term conditions. Someone may feel supported to manage
their condition but that may not translate into a reduced percentage of
people with long-term conditions where day-to-day activity is affected.
35. For instance someone with glaucoma may have presented late with
significant vision field loss. Even if they are supported to manage their
condition and as a result do not experience further deterioration in their
sight, their day-to-day activity will still be affected.
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2. Would indicators such as these be good measures of NHS
progress in this domain? Is it feasible to develop and implement
them? Are there any other indicators that should be considered for
future?
36. It could be beneficial to develop indicators that are based on
standard questionnaire-based tools for measuring quality of life.
However, it is important to recognise that the use of a generic tool such
as the EQ-5D may be problematic since the EQ-5D is not good at
measuring quality of life impact in all disease areas. For instance, it is
well known that it is poor at measuring impact on quality of life in people
with sight loss. For people with sight loss the NEI-VFQ 25 or 36 are more
appropriate. Where improvements are to be measured in specific disease
areas specific indicators should be used.
3. As well as developing Quality Standards for specific long-term
conditions, are there any cross-cutting topics relevant to long-term
conditions that should be considered?
37. We are aware that work is under-way to develop a quality standard
on patient experiences. For long-term conditions a Quality Standard on
patient education may be beneficial since patient education and patient
empowerment are significant elements in efforts to improve adherence to
treatment regimes and by extension to improve treatment outcomes.
Understanding their condition is particularly important for people with
long-term conditions, and it is not enough to provide one-off information.
It is a process that involves many players and generic guidance may be
required to improve this aspect of care.
38. A Quality Standard on patient education would need to cover the
provision of information to people with different disabilities and the new
legal requirements under the Equality Act 2010. This would be of
particular interest to blind and partially sighted people whose information
needs are rarely met by the NHSiv. While there are attempts to
incorporate this aspect in a generic statement that is included in each
Quality Standards, a more detailed Quality Standard focusing on patient
education would help practitioners understand the requirements of good
practice in this area.
39. People with a sensory impairment must receive information in a
format, which they can understand – such as audio, electronic email,
Braille. It should be made available where possible before an
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appointment. Appointment letters etc. should be in the appropriate
format.
Domain 3: Helping people to recover from episodes of illness or
following injury
1. Are these appropriate overarching outcome indicators for this
domain? Are there any other indicators that should be considered?
40. The overarching outcome indicators for this domain seem
appropriate.
2. What overarching outcome indicators could be developed for this
domain in the longer term?
41.
No comments.
3. Is this a suitable approach for selecting some improvement areas
for this domain? Would another method be more appropriate?
42. The approach chosen seems to be suitable. Sight loss is an
independent predictor for falls in older people. We welcome the
identification of falls as an area for improvement. Please also note our
comments on developing NICE work on indicators for preventing sight
loss.
4. What might suitable outcome indicators be in these areas?
43.
No comments.
Domain 4: Ensuring people have a positive experience of care
1. Do you agree with the proposed interim option for an overarching
outcome indicator?
44. The short term option of tracking performance on a predefined
subset of survey questions across available and relevant surveys seems
appropriate although the usefulness of the five themes (access and
waiting; safe, high quality coordinated care; better information, more
choice; building closer relationships; and clean, friendly comfortable
place to be) depends to a large extent on the way these themes are
defined. For instance, does coordinated care refer to coordination
between hospital departments or coordination between the NHS and
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other services (especially social services)? Does better information mean
better quality information or does it also cover access to information
through provision in different formats (Braille, audio, large print, etc)?
What does building better relationships refer to (with all staff, primarily
with nurses, between NHS staff, between different service providers)?
And how is a “clean, comfortable and friendly place to be” defined? Does
this include the requirement for hospitals to have strong colour contrast
and lighting in their buildings to aid people with a sight problem?
2. Do you agree with the proposed long-term approach for the
development of an overarching outcome indicator?
45. We welcome the proposed long-term approach although we would
caution that the proposed questions need to be combined with patient
empowerment and advocacy. Asking a patient whether they received the
care and services they need only makes sense if patients are aware of
what kind of services should be available. Patients may not always be
able to identify a need if their expectations of what could be done are
low. For instance, a patient with sight-threatening eye disease
undergoing treatment may not be aware that he or she may benefit from
rehabilitation measures or from emotional support even though the
treatment is ongoing. They might feel that their needs have been met
because they are unaware of available support or because nobody has
checked them for symptoms of depression.
46. Expert patients, carers, peer support groups and patient advocacy
services can all play a role in tackling this problem.
3. Do you agree with the proposed improvement areas and the
reason for choosing those areas?
47. The proposed improvement areas are appropriate. However, we
would add ‘Care for people with long-term conditions’. People with longterm conditions have particularly frequent contact with health services
and will have very different experiences to people who only access
health services on an ad hoc basis.
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4. Would there be benefit in developing dedicated patient
experience Quality Standards for certain services or client groups?
If yes, which areas should be considered?
48. We would welcome the development of a Quality Standard
covering the experience of patients who are blind or partially sighted.
These patients face a particular challenge in terms of accessing private
medical informationv, eating and drinking when in hospital and navigating
the hospital environment. This Quality Standard could encompass the
experience of patients who develop sight-threatening eye disease and
subsequently lose their sight. However, it is important to recognise that
blind and partially sighted people can obviously develop any number of
diseases that are not linked to their eye sight. A Quality Standard on the
experience of blind and partially sighted patients would highlight the
importance of the NHS catering for this group of patients in all disease
areas.
5. Do you agree with the proposed future approach for this domain?
49. Yes, and the Quality Standard on the experience of blind and
partially sighted patients and those with sight-threatening eye disease
may need to be incorporated into this future approach if there is currently
insufficient evidence to support a Quality Standard.
Domain 5: Treating and caring for people in a safe environment and
protecting them from avoidable harm
1. Do you agree with the proposed overarching outcome indicator?
50. Yes, we welcome the overarching outcome indicator, particularly
since the Government has decided to abolish the National Patient Safety
Agency and it will be essential to devise a system whereby patient safety
continues to be monitored and adverse events are being reported. We
are concerned that the non-mandatory nature of Quality Standards may
lead to a weakening of the commitment to reporting adverse events. It is
therefore essential that the overarching outcome indicator highlight the
importance of patient safety.
51. Particularly in the current economic climate there is a risk that
patient safety is being de-prioritised in favour of cost-cutting measures. It
is essential that this aspect of quality remains a top priority.
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2. Do you agree with the proposed improvement areas and the
reasons for choosing those areas?
52. We agree with the proposed improvement areas but would propose
that patient environment should also include accessibility (including
design that takes account of the needs of blind and partially sighted
patients). Even though accessibility is governed by the Equality Bill
aspirational Quality Standards that emphasise good practice in this area
would be welcome.
3. What action needs to be taken to ensure that no one is
disadvantaged by the proposals, and how do you think they can
promote equality of opportunity and outcomes for all patients and,
where appropriate, NHS staff?
53. The biggest weakness of the new framework is that the
implementation of Quality Standards will not be mandatory unless they
are incorporated in service level agreements. We understand that
decisions about which of the 150 planned Quality Standards are
incorporated into contracts will depend on local needs assessments. 54.
Because of the ability to prioritise in line with local needs it will be
impossible to guarantee equality of opportunity and outcomes for all
patients. This is no different to the current system where local PCTs can
choose from a set of vital signs indicators and World Class
Commissioning outcomes.
55. The current system provides few levers to improve eye health and
the treatment of eye disease due to a lack of related performance targets
even though it is clear that the number of people with sight-threatening
eye disease is increasing significantly due to the ageing of the
population. The new framework presents an opportunity to address the
lack of focus on eye disease and improve outcomes for patients. Quality
Standards on eye disease are one way forward, locating commissioning
of eye health care with the National Commissioning Board rather than
GP Commissioning Consortia, would be another option.
56. In addition, a significant element of improved eye health care and
prevention of sight loss will be access to new treatments; and this
requires a clear indication as to whether the implementation of NICE
technology guidance will continue to be mandatory and will be enforced
across the country even in areas that have decided to focus on other
disease areas.
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4. Is there any way in which the proposed approach to the NHS
Outcomes Framework might impact upon sustainable
development?
57.
No comment.
5. Is the approach to assessing and analysing the likely impacts of
potential outcomes and indicators set out in the Impact Assessment
appropriate?
58. The approach seems appropriate although there is clearly
considerable uncertainty as to the impact of the suggested changes.
Seen in isolation the approach makes sense. The question will be
whether all the elements of the new system (commissioning, regulation,
performance monitoring) will work together to deliver the desired
outcomes. The impact assessment recognises the high level of
uncertainty and whether or not the proposed system will deliver seems
more relevant than whether the approach is appropriate.
6. How can the NHS Outcomes Framework best support the NHS to
deliver best value for money?
59. The entire system is designed to measure outcomes and drive up
quality of care. By doing so it should ensure better use of resources and
improved outcomes. World Class Commissioning had similar aims and
improved performance in some areas where it was implemented by
highly competent commissioners. The challenge will be to ensure that the
new GP Commissioning consortia continue effective commissioning or
improve commissioning where it is currently not delivering.
7. Are there any other issues you feel have been missed on which
you would like to express a view?
60. What the framework does not clarify is whether there will be a
hierarchy of Quality Standards (similar to the vital signs tiers), if not
explicitly, then in practice. In other words, if the NHS Commissioning
Board’s performance is managed against a subset of the 150 Quality
Standards, will there be any system to ensure that all GP Commissioning
Consortia incorporate these into their commissioning contracts? How will
the subset of Quality Standards be chosen? These are key question that
will determine the way Quality Standards will be used. If the majority of
Quality Standards are simply perceived as nice add-ons their impact on
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service improvement is likely to be limited, particularly in a time of
financial constraints.
For any questions please contact:
Barbara McLaughlan, Policy and Campaigns Manager, Eye Health and
Social Care, RNIB (tel: 020 7391 2302, e-mail:
[email protected])
i
Kay, A. (2009): Lost and Found
Access Economics (2009): Future Sight Loss UK (1)
iii
WHO: The global burden of disease: 2004, part 4: Disease incidence,
prevalence and disability. Available at:
www.who.int/healthinfo/global_burden_disease/2004_report_update/en/i
ndex.html
iv
Please see Dr Foster research [Sibley, E. and Banost, A. (2009):
Towards an inclusive health service; a research report into the availability
of health information for blind and partially sighted people] available from:
Hugh Huddy (e-mail: [email protected])
v
Please see endnote 4
ii
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