January 2011
RNIB Group response to the Department of Health consultation
Liberating the NHS: Greater Choice and Control
About us
RNIB Group is an association of RNIB and Action for Blind People. We
are pleased to have the opportunity to respond to this consultation.
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.
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.
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.
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 in a
range of areas including, but not limited to; finding employment, applying
for benefits, housing issues, aids and adaptations, holiday breaks and
information on local services.
General comments
1.
As organisations that are involved in the prevention of blindness
and represent the interests of blind and partially sighted people RNIB and
Action for Blind People are keenly interested in the way health services
for people with eye disease and those with sight loss will be delivered in
the future.
Eye health promotion, the provision of treatment for sight-threatening eye
diseases and the support of people who have lost their sight currently
have low priority in the NHS and social services despite the growing
number of people facing both due to the ageing of the population.1
2. In the UK, there are currently almost 2 million people living with sight
loss. With our aging population, by 2050, this number is predicted to rise
to almost four million.
Over 50% of sight loss can be avoided. Sight loss is also expensive. In
2008, an estimated £22 billion was associated with it – in treatmentrelated costs, indirect costs such as informal care and ‘quality of life’
costs such as financial hardship and depression.
Please find below our responses to those questions in the consultation
document where we feel we have specific expertise.
Section 1: Greater choice and control
Q1. How should people have greater choice and control over their
care? How can we make this as personalised as possible?
Q12. What else needs to happen so that personalised care planning
can best help people living with long term conditions have more
choice and control over their healthcare?
RNIB supports the greater choice and control agenda; it is vital that blind
and partially sighted people, those at risk of sight loss and people who
care for those with visual impairment are supported to make choices
which have a positive impact on their diagnosis, subsequent disease
management and all aspects of their day-to-day living. It is however
1
Access Economics (2009): Future Sight Loss UK (1): the economic
impact of blindness and partial sight in the UK population. Available at:
www.rnib.org.uk
2
acknowledged that local health and social care services are currently
failing to deliver support to people losing their sight.
Research by RNIB has shown that 70 per cent of blind and partially
sighted people said they wanted someone to talk to about their fears and
concerns after being told they were losing their sight. Only 19 per cent
were offered this opportunity in the eye clinic2 and worryingly nearly a
quarter (23 per cent) of blind and partially sighted people leave the eye
clinic not knowing, or unsure of, the name of the eye condition that
caused them to lose their sight.3
Sight loss is associated with higher than normal risk of depression4 and
one of the key things a number of people who have lost their sight
express is dissatisfaction with how ophthalmologists or other staff
communicated the news that nothing more could be done to help them.5
Additionally, RNIB has found that some areas have seen surprising falls
in the numbers of new people registering with their councils as blind or
partially sighted, causing concern that some eye hospitals are failing to
refer people to social care services.6
This is supported by the fact that the percentage of people reporting that
they received a visit from social services within six weeks of their
appointment at the eye hospital ranged from 88 per cent for the best local
authority to 14 per cent for the worst.7 The same report found that in the
2
McBride, S (2001), Patients talking 2: The eye clinic journey
experienced by blind and partially sighted adults: a quantitative study,
London, RNIB
3
Douglas, G., S. Pavey and C. Corcoran (2008) (a), Access to
information, services and support for people with visual impairment,
Visual Impairment Centre for Teaching and Research (VICTAR),
University of Birmingham
4
Evans, J.R., A.E. Fletcher and R.P Wormald (2007), Depression and
anxiety in visually impaired older people, Ophthalmology, Volume 114,
Issue 2, International Centre for Eye Health, London, pp. 283-288.
5
Douglas, G., C. Corcoran and S. Pavey (2006), Opinions and
circumstances of visually impaired people in Great Britain: report based
on over 1000 interviews, Visual Impairment Centre for Teaching and
Research (VICTAR), University of Birmingham.
6
RNIB, Lost and Found (2010) pp15
7
Douglas, G., S. Pavey and C. Corcoran (2008) (a), Access to
information, services and support for people with visual impairment,
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year after registration, less than a quarter (23 per cent) of people who
lost their sight reported that they were offered mobility training to help
them get around independently.
Given the difficulties we know blind and partially sighted people are
facing in accessing health and social care services that meet their needs
it is concerning that the Initial Equality Impact Assessment document
accompanying this consultation states that; ‘it is expected that choice of
treatment and provider will become the reality for people in the vast
majority of NHS-funded services by no later than 2013/14. In return, we
will expect them to take responsibility for the choices they make.’
Given current issues with service provision this statement asserts that
not only will blind and partially sighted people be expected to choose
between services which do not meet their needs, they will also have to
live with the consequences of those unsatisfactory choices. As the 2010
RNIB report ‘Lost and Found’ makes clear, poor quality or non-existent
personal support at the eye clinic should not be viewed as the fault of
individual professionals.
Local health services are failing to ensure that support is provided to
people at the time of sight loss. Patients need time and emotional
support to absorb difficult news and opportunities to discuss their
concerns to enable them to make the best choices for their specific
needs going forward. Only a small minority of eye clinics have support
workers, who help people to adjust to losing their sight and refer them to
vital services.8
The issue for blind and partially sighted people is not simply the
difference in service between discreet providers, but rather systemic
problems which exist across the entire health and social care system.
These difficulties, particularly in relation to how disabled people are
supported to access health care services is illustrated by the case study
found on page 10 of the Greater Choice and Control consultation
document.
The patient, Jason, who is deaf, decides on the recommendation of a
friend who is also hearing impaired to wait longer to see a clinician for an
undiagnosed condition because the team his friend has recommended to
Visual Impairment Centre for Teaching and Research (VICTAR),
University of Birmingham
8
RNIB Lost and Found (2010) pp11
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him ‘are very experienced at treating deaf people’ and will understand
‘his particular needs’. This case study is problematic as it presupposes
that people with disabilities will be happy to accept a choice which
supports their ‘particular needs’ even if this choice results in a longer wait
for diagnosis or treatment of conditions that may be immediately
unrelated to the disability itself. Even taking into account the fact that in
the case study the choice to wait longer is made by one specific
individual patient, it is still concerning that he is ghettoised into visiting
the only willing provider, which going by the limited testimony of one
other person, will be able to meet his ‘particular needs’, whatever these
have been defined as.
Although ‘soft information’ and recommendations undeniably play a
significant role in the choices both patients and their General
Practitioners (GPs) make in terms of service provider, the real issue at
stake is that like providers should be equitable in their provision of
services, so that all like services are able to equally support the needs of
disabled people. This must be achieved so that real choice and control is
facilitated for all those needing to access NHS services regardless of
personal requirements.
The assertion on page 4 of the consultation document that ‘choice
encourages healthcare providers to tailor their services to what people
want and improve their quality and efficiency’ is also problematic for
smaller groups of people with similar disabilities, such as blind and
partially sighted people, as it assumes that there is always a critical mass
of the same type of patient with the same ‘particular needs’ all influencing
the same services in the same way.
In summary then, to guarantee that blind and partially sighted people
have greater choice and control over their care, and ensure that the way
in which care is planned is as personalised as possible to the needs of
blind and partially sighted people RNIB recommends the following;
 The improvement of patient support in hospital eye clinics including
opening up access to information, advice and emotional support at
the time of diagnosis for people losing their sight.
 That local health and social care services work together to
commission and deliver services in the eye clinic which support
those losing their sight, and that these services be commissioned
equitably in local areas.
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 Local health and social care services be modernised so that local
low vision services are extended and work in concord with eye
clinics. This will ensure that people who lose their sight are
supported to maximise the use of any remaining vision and are
quickly referred from the eye clinic to a suitable local rehabilitation
service.
 Local social services must ensure that those who lose their sight
receive care and support services which enable their full inclusion,
including accessing and managing personal budgets.
 That Government ensures the Equality Act Public Sector Duty
places robust statutory requirements on local authorities and
healthcare providers to ensure that barriers to equal assess to
services for blind and partially sighted people are identified and
addressed, and that additionally all service providers take steps to
promote positive attitudes towards blind and partially sighted
people.
Q7. When people are referred for healthcare, there are numbers of
stages where they might be offered a choice of where they want to
go to have their diagnostic tests, measures and samples taken. At
the following stages, and providing it is clinically appropriate,
should people be given a choice about where to go to have their
tests or their measures and samples taken:
- At their initial appointment - for example, with a GP, dentist,
optometrist or practice nurse?
- Following an outpatient appointment with a hospital
consultant?
- Whilst in hospital receiving treatment?
- After being discharged from hospital but whilst still under the
care of a hospital consultant?
In reference to choice and cost effectiveness we would like to address
the ‘after being discharged from hospital but whilst still under the care of
a hospital consultant’ aspect of this question in relation to stable
glaucoma patients. At present these patients can be discharged into the
community to be managed by a specialist optometrist. If however the
patient’s condition destabilises they are then referred back under the
care of their named consultant for further assessment and management
and it would need to be clarified how choice could be applied in this
instance.
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For stable patients it is not cost-effective for them to remain under care of
a consultant when it is not clinically necessary for them to do so.
Additionally to support patient choice it would need to be clarified how
patients could be provided with a choice of named specialist optometrists
to provide this community-based management to them.
Q10. What information and/or support would help you to make your
choice in this situation and are there any barriers or obstacles that
would need to be overcome to make this happen?
Q11. Is there anything that might discourage you from changing
your healthcare provider or named consultant-led team - for
example, if you had to repeat tests, wait longer or travel further?
We welcome that the Initial Equality Impact Assessment accompanying
this consultation recognises that disabled people experience difficulties
when accessing health services and that choice offered must be
sensitive to any additional needs disabled people may have. It is
particularly welcome that the Initial Equality Impact Assessment
recognises the challenges in relation to accessible information for blind
and partially sighted people.
Addressing these challenges will be vital to ensuring blind and partially
sighted people can make informed decisions about their healthcare. We
have outlined our concerns regarding access to information in further
detail in the RNIB response to the Department of Health consultation ‘An
Information Revolution’.
In relation to blind and visually impaired people accessing choice and
control we predict the loss of the Disability Living Allowance (DLA)
mobility component for people living in local authority funded residential
places (including residential schools for the disabled and individuals of
working age living in residential accommodation) will have a massive
impact on people’s abilities to access treatments and services in the
locations they wish to. The DLA mobility component is a vital facilitator of
independent travel for disabled people living in residential care allowing
people to access their choice of healthcare provider in the manner which
best suits their needs and requirements.
The loss of this benefit for disabled people living in residential care
means that potentially they will be excluded from accessing the wide
range of willing providers proposed by this consultation, effectively
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deleting their rights to choice and person-centred care. This is supported
by the King’s Fund9 who found that those without access to transport
could be disadvantaged in areas where a trust is failing to maintain
quality standards and large numbers of people exercise choice to be
seen or treated elsewhere.
Section 2: Shared healthcare decisions
Q21. How can we support the changing relationship between
healthcare professionals and patients, service users, their families
and carers?
Q22. What needs to be done to ensure that shared decision making
becomes the norm? What should we do first?
Q24. What sort of advice and information would help healthcare
professionals to make sure that everyone can make choices about
their healthcare?
Research by RNIB has found that most GPs feel that they do not know
enough about the needs of people with visual impairment. Among GPs,
there is a large gap between knowledge and experience around treating
eye conditions. On the whole GPs are well informed about different eye
diseases and conditions; however some GP’s struggled to recognise
symptoms of common conditions such as cataract, diabetic retinopathy,
glaucoma or the most common cause of blindness, age-related macular
degeneration. 10
King’s Fund 2010; Patient Choice; how patients choose and how
providers respond.
10
Attitudes to eye health research briefing; RNIB commissioned Dr
Foster, the leading health information agency, to measure current
opinions and knowledge among GPs and optometrists around issues
relating to eye health and the prevention of sight loss. An online survey of
101 GPs and 101 high street optometrists – drawn from nationally
representative panels – was conducted in March 2010, the first in a
series of tracker surveys. The sample was evenly split by gender and
represented the full range of strategic health authorities across the UK.
Each questionnaire took approximately five minutes to complete and
included one open-ended question.
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GPs themselves report that they need better information and education
to help them understand the demographic dimensions of certain eye
conditions. For example people from black and minority ethnic
communities are at greater risk of developing some of the leading causes
of sight loss. Despite this, RNIB research has found only two in five GPs
say that they are aware that certain eye conditions are more prevalent in
some minority ethnic groups.
Lack of information and awareness among GPs regarding eye disease
and the needs to those with visual impairment also has worrying
implications for GP commissioning of related services. This lack of
awareness could potentially lead services which diagnose, treat and
manage eye disease and sight loss being neglected at local level,
diminishing the numbers of ‘willing providers’ and removing real choice
and control for people who require these services.
As an RNIB beneficiary commented when asked about the benefits of
GP consortia making decisions about service provision based on costeffectiveness in a recent survey we carried out;
‘GP’s have too much to do dealing with acute services like
cardiac and cancer cases. They will not want to know about
low vision services’.
Q29. What help should be available to make sure that everyone is
able to have a say in their healthcare?
Q30. Who would you like to go to for help with understanding
information and making decisions and choices about your
healthcare, or that of someone you support?
Q33. What information and support do voluntary sector and patientled support groups need so that they can continue to help people to
make choices about their healthcare?
Q34. How can people be encouraged to be more involved in
decisions about their healthcare?
The 2010 Equality Act clearly outlines that 'reasonable adjustments' must
be made to ensure patients or customers do not experience any barriers
to accessing information or services. King’s Fund research on patient
choice also found that people who use services more, correspondingly
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value choice more, when compared to those who have less contact with
NHS and social care services.
Choice of services and service provider is therefore especially important
for blind and partially sighted people, particularly for those who are newly
diagnosed, those losing their sight and those who have additional health
needs. Currently there are concerns that local health services are failing
to deliver support to people losing their sight.
The current lack of opportunity to discuss diagnosis, the lack of formal
counselling at time of sight loss and the lack of information on diagnosis
and testing to assess risks of sight loss in co-morbidities (for example
dementia, diabetes, stroke, heart disease) all raise very real concerns
that local health services are failing blind and partially sighted people,
those losing their sight and those at greatest risk of sight loss. People
who have been given a diagnosis of sight loss need to be provided with
information by eye clinics to understand the benefits of registration as
blind or visually impaired, supported by local authorities to use individual
and personal budgets and signposted by local authorities to relevant
local organisations that can provide rehabilitation and low vision services
in a timely manner.
There are also concerns regarding current provision of domiciliary eye
care, available to anyone who cannot attend a high street practice
without assistance due to a physical or a mental disability. A significant
proportion of those with mental and physical disabilities are older people
who as a group have a higher predisposition to eye disease and related
difficulties such as increased risk of falls.
In the UK in 2006, approximately 1.4 million people were confined to their
own homes (including sheltered housing or extra care units) or residential
care, unable to leave home unaccompanied. However in the year to 31
March 2006 only 349,172 domiciliary NHS sight tests were carried out in
Great Britain. There are currently an estimated 2 million people living with
sight loss in the UK (including 1.7 million over the age of 65), and this
number is set to double over the next 25 year resulting in an increase in
demand for domiciliary eye care services.
Given the increasing demand for these services and the current deficit in
provision it would be beneficial to extend domiciliary eye care to all those
living in residential care. Currently people living in residential care are not
able to access domiciliary eye care if they are defined as mobile and are
felt able to independently access a high street optometrist. However, in
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reality very few of these individuals ever visit external optometrists and
as a result many live with undetected eye disease and unaddressed low
vision.
With the proposed loss of the mobility component of DLA for those living
in residential care, people in this situation will be less able to exercise
choice about healthcare providers, such as optometrists, as they may no
longer be able to afford to travel to attend appointments. It is therefore
vital that the range of services available is extended to ensure choice and
control for people residing in these settings.
Voluntary sector and patient-led support groups need to be supported
and valued for their knowledge and expertise by GP consortia, local
authorities and health and social care providers. They also need to be
consulted and included in dialogue about service development so that
they can reliably support people to understand choices which affect them
and make real choices about their health and social care.
Voluntary organisations can provide information, services and training to
health and social care professionals which has been developed with the
needs and requirements of the groups they represent in mind. As
independent voices voluntary sector and patient-led organisations have
long been best placed to represent and communicate the needs of
patients and their carers to commissioners and service providers. If the
an outcomes and control orientated health and social care sector is to
offer real choice for blind and partially sighted people this must be driven
by collaborative working with representative organisations such as RNIB
at both national and local levels.
Section 4: Safe and sustainable choices
Q45. How can we make sure that any limits on choice are fair, and
do not have an unequal effect on some groups or communities?
Q46. What do you consider to be the main challenges to ensuring
that people receive joined-up services whatever choices they make,
and how should we tackle these challenges?
In response to the NHS white paper Equity and Excellence: Liberating
the NHS RNIB surveyed 135 blind and partially sighted individuals who
raised concerns regarding the impact of these new proposals on them.
One respondent commented:
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‘When a surgeon says to a blind person ‘I can do no more’
everyone seems to think that it’s the end of the road. It is not,
it is when the rehab process begins (if it has not already
begun) and it is then when the job of maintaining
independence starts and if only the local authority sensory
workers worked more closely with NHS teams, then a huge
improvement could be made in service provision’.
The importance of joined-up health and social care services for blind and
partially sighted people cannot be underestimated. Choice is irrelevant if
services are unable to work effectively together to provide a smooth
transition between NHS and social care provision.
All commissioners and providers must play a role to ensure that this is
able to happen including encouraging the service providers to work
towards exceeding the minimum registration requirements set by the
Care Quality Commission. Providers should be encouraged to use
National Institute for Health and Clinical Excellence (NICE) guidelines
and the new NICE quality standards to ensure that services are run along
best practice lines and are of a consistent standard across the sector.
Choice and control over NHS care and services is vitally important to
blind and partially sighted people. However, increasing the number of
options and opening up services in other areas must be couched within a
widespread overhaul of existing services for blind and partially sighted
people and the timely and appropriate commissioning of new services in
areas where these are lacking. This must be achieved to ensure that
people experiencing sight loss are able exercise true choice and control
at their time of greatest need.
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