Cumbria Vision Strategy 2015 2019 - Cumbria County Council - Serving the people of Cumbria
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Cumbria County Council
Cumbria Vision Strategy
2015 – 2019
Serving the people of Cumbria cumbria.gov.uk
Cumbria Societies for the
Blind
Page 1 of 36Contributors
The Strategy has been developed by a cross sector planning group, whose
members include patients and service users, clinicians, professionals, senior
managers and advisory agencies representing the Local Authority, Health and
the Voluntary Sector.
The main contributors are as follows:
Bridging the Gap, Caritas Care;
Children and Families Services, Cumbria County Council – SEND
Team;
Cumbria Clinical Commissioning Group [CCG];
Cumbria Societies for the Blind (Barrow and Districts Society for the
Blind, Carlisle Society for the Blind, Eden Sight Support, Sight Advice
South Lakes, West Cumbria Society for the Blind);
DeafVision;
GP – GP Eye Clinics in North Cumbria;
Health Care and Community Services, Cumbria County Council – Adult
Social Care (Commissioners and ROVI’s) and Public Health;
Healthwatch – representative is also a patient / Service User;
Local Eye Health Network [LEHN], North West.
Page 2 of 36Contents
Executive Summary 4
1. Introduction 6
2. Patients, Service Users and Carers 8
3. Introducing the Vision Pathway 10
4. Services on the Visual Impairment Pathway 12
5. Costs, Trends and Prevalence of Visual Impairment 20
6. Main Diagnoses of Visual Impairment 22
7. Socio-Economic Factors 24
8. Life and Lifestyle Factors 25
9. Other Conditions Linked to Visual Impairment 29
10. Health, Wellbeing and Visual Impairment 32
11. Wider Avenues of Support 33
12. Service Development Priorities 34
13. Conclusion 35
Page 3 of 36Executive Summary
Cumbria’s Vision Strategy sets out the current landscape for eye health and
visual impairment support provision in the County, identifies gaps in service
delivery, and sets out recommendations for current and future service
provision.
The strategy brings together professionals across hospitals, health agencies,
the Council, voluntary sector, patients and service users to evidence current
and future service requirements, resulting in a cross sector delivery plan that
supports the implementation of Outcomes Frameworks for the NHS, Public
Health and Adult Social Care.
The main challenges facing Cumbria in its provision of eye health and visual
impairment support services are:
The population of visually impaired people in Cumbria is expected to
increase from 9,116 in 2011 to 11,122 by 2020 and 14,498 by 2030.1
Spending on ‘Problems of Vision’ in Cumbria by the NHS was around £22.3
million in 2010/112: ways need to be found to provide health care for
higher numbers without major real terms increases in funding.
50% of visual impairment, and expenditure, is avoidable through adopting a
preventative approach.3 Greater awareness of eye health, improved sight
loss pathways, more timely detection of eye disease and changes to
individuals’ lifestyles are some of the factors which can reduce this.
Reducing unnecessary sight loss can potentially lead to cost savings within
local areas as well as helping to maintain good health, wellbeing and
independence for individuals through the modification of lifestyle and increased
awareness of visual impairment.
While there is some great work happening to support those with a visual
impairment in Cumbria there are also some critical gaps. The most critical
main gaps in the provision of vision services are:
Health and Wellbeing: Embed the Vision Strategy into the Health and
Wellbeing framework, and achieve a user led partnership approach to the
planning, delivery and evaluation of eye health and sight loss support
services;
Prevention: Take action against the most common causes of preventable
sight loss, such as diabetes. Raise awareness of eye health and
1
POPPI data quoted in Cumbria JSNA 2012
2 NHS DH Programme budgeting tool 2010/11
3
Tate, R., Smeeth, L., Evans, J., Fletcher, A., (2005) The prevalence of visual impairment in
the UK; A review of the literature.
www.rnib.org.uk
Page 4 of 36preventable sight loss amongst the public and professionals. Maximise the
uptake of eye examinations and eye health screening programmes;
Joined up data: Ensure that comprehensive cross sector data on sight
loss and local demographics is collected and shared to inform resource
allocation across Public Health, NHS, Optometry, Social Care and
Voluntary organisations. The Eye Health Needs Assessment will make a
major contribution here;
Joined up services: Ensure that effective and efficient service provision is
available, resulting in a clear pathway for people experiencing sight loss
from diagnosis through to independent living. This will include optometrists,
GPs, ophthalmologists, Eye Clinic Liaison Officer [ECLOs], Rehabilitation
Officers for the Visually Impaired [ROVIs] and social care teams, and local
sight loss organisations/blind societies;
Social inclusion and independence: Ensure that people with sight loss
have good access to key local services - information, transport, leisure,
employment, education and welfare rights to obtain and maintain
independence and not experience social exclusion, inequality or isolation;
Children’s services: Develop and embed into the main vision strategy
considerations for children and young people, including evidence of current
and future need, sight loss pathway, arrangements for transition to adult
services and a delivery plan to address gaps and need.
The main priorities identified in Cumbria to address these key areas are:
Increasing public awareness of eye health and preventable sight loss;
Promoting the inclusion of sight loss awareness in local training, and
networking opportunities for NHS and social care professionals, and Third
Sector;
Providing information for Carers about the value of eye-tests;
Developing Eye Care Liaison Officer (ECLO) services across Cumbria;
Establishing a seamless sight loss pathway for health and social care for
children and adults;
Developing and expanding community based eye health services;
Promoting fully accessible leisure and education services for people with
sight loss;
Promoting the increase of employment and training opportunities for people
with sight loss;
Promoting fully accessible transport for people with sight loss;
Working with housing management and adaptation services to provide a
timely and effective response to the needs of people with sight loss
including forward planning when undertaking major refurbishments;
Developing and expanding services for people having a dual sensory loss.
A delivery plan sets out how these priorities are to be achieved with
timescales.
Page 5 of 361. Introduction
The Cumbria Vision Strategy implements the UK Vision Strategy4; the UK
Vision Strategy’s three strategy outcomes are:
Everyone in the UK looks after their eyes and their sight;
Everyone with an eye condition receives timely treatment and, if permanent
sight loss occurs, early and appropriate services and support are available
and accessible to all;
A society in which people with sight loss can fully participate.
Visual impairment impacts our community on many different levels. On a
personal level, it can be a deeply traumatic life event. On an economic level, it
is estimated that in 2008 visual impairment cost the UK £22 billion. Yet, the
number of visually impaired people living in the UK is set to double from 2 to 4
million by 2050. Therefore, the issues that surround the support and
prevention of visual impairment need to be urgently tackled.
“I could not believe it. It was like somebody had ripped the rug
from underneath my feet. I was in no man’s land.” 5
The development of a visual impairment can be an upsetting and disrupting
experience. It can lead to the loss/disruption of the individuals educational and
employment status and /or opportunities, hobbies and leisure activities maybe
reduced or become inaccessible, routines may need to be adapted, and
everyday tasks become harder to achieve without outside help.
Depression, reduction of self-esteem, low levels of confidence and ever
changing roles within their environments are also a common consequence due
to the onset of a significant visual impairment.
However, these consequences can be eased with the right kind of habilitation,
rehabilitation, and enabling support. The right support at time can be crucial in
helping individuals regain independence and to re-engage in a social and
economic context. In essence, with the right support at the right time the costs
associated with visual impairment can be eased on a personal, social and
economic level.
The Cumbria Vision Strategy aims to provide a single portal for the planning,
commissioning, delivery and evaluation of services for eye health and visual
impairment support in the county. It also aims to ensure that Cumbria is able
to implement national outcomes linked to eye health and visual impairment set
out in the Government’s Outcomes Frameworks for the NHS, Public Health
and Adult Social Care. References to the relevant outcomes are made
throughout the document. The Strategy needs to ensure that services are
4 http://www.vision2020uk.org.uk
5 Blind female aged 30, ‘Executive Report for the Thomas Pocklington Trust: Emotional Support to
People with Sight Loss’, 30th June 2010, p322.
Page 6 of 36developed and delivered that are appropriate for all citizens of Cumbria
irrespective of ethnicity, religion / belief, gender, disability, sexuality or age.
The Strategy sets the stage for the development of seamless, cost effective
and joined up prevention initiatives and service provision in Cumbria that puts
patients and service users at the heart of their delivery. A delivery plan will
ensure that the recommendations are owned and implemented across all key
sectors.
It is a high level document which provides the framework for a number of other
pieces of work being undertaken in the County:
The North Cumbria and South Cumbria Low Vision Groups, convened
by local blind societies, have enabled service users, social care
professionals, clinicians and voluntary sector staff to meet, identify
gaps in provision, formulate proposals for change and minimise barriers
to joint working;
The North East and Cumbria Local Eye Health network (LEHN)6 has
cross sector Task and Finish groups working in Cumbria currently
reviewing Low Vision Services, Children’s Vision Screening and
Community Service provision. The aim of these groups is to produce
equitable service provision meeting national standards and also
streamline pathways and improve efficiency and access for patients;
Cumbria County Council’s Health and Care Services Directorate are to
carry out an Eye Health Needs Assessment working with the LEHN and
stakeholders;
Engagement with key stakeholders including the Cumbria CCG in
taking the findings forward should influence and shape eye health
commissioning in the future.
The Strategy has been developed by a cross sector planning group, whose
members include patients and service users, clinicians, professionals, senior
managers and advisory agencies representing the Local Authority, Health and
the Voluntary Sector. The strategy will be revised as local policy, strategy,
priorities or service considerations in the County change.
6
The North East and Cumbria Local Eye Health Network is a clinician led network. It sits within
the Area Team which is part of NHS England but works across the commissioning process to
provide impartial clinical advice and guidance in all areas of Eye Health Commissioning.
Page 7 of 362. Patients, Service Users and Carers
2.1 Patients and Service Users - In 2012 a national consultation of
thousands of service users across the UK was undertaken as part of an
initiative called ‘Seeing it My Way7. The consultation identified 10 key
expectations of patients and service users with visual impairment:
1. That I have someone to talk to;
2. That I understand my eye condition and the registration process;
3. That I can access information;
4. That I have help to move around the house and to travel outside;
5. That I can look after myself, my health, my home and my family;
6. That I can make the best use of the sight I have;
7. That I am able to communicate and to develop skills for reading and
writing;
8. That I have equal access to education and lifelong learning;
9. That I can work and volunteer;
10. That I can access and receive support when I need it.
Service users involved in forums run by local blind societies in Cumbria
contributed to this exercise.
2.2 Carers – Cumbria has over 50,000 carers, with over 10,000 providing
50 hours or more of caring each week.8
There are two NHS outcome indicators relating to Carers. The NHS outcome
indicators include Enhancing the quality of life for carers (health related – 2.4),
and Improving the experience of care for people at the end of their lives (4.6),
which will be further developed based on a survey of bereaved carers.
The Adult Social Care Outcomes Framework refers to the ‘overall satisfaction
of carers with social services’, ‘carers feel that they are respected and equal
partners throughout the care process’ (3B) and ‘carers can balance their
caring role and maintain their desired quality of life’ (1D).
2.3 The Care Act 2014 – The Government have published the Care
Act and regulations, which came into force in April 2015. The Care Act is very
important as it will replace all existing legislation concerned with care.
The Act will impact and affect many blind and partially sighted people who
access a range of services, including rehabilitation services which provide
training and support for people to live independently. The Act also covers care
and support which provides adults with additional support when needed such
as help with cleaning and maintaining the home, and it lays out the duties and
powers the local authority has to meet a carer’s need for support.
The Care Act makes it clear that local authorities must maintain registers for
blind and partially sighted people and the guidance sets out how this process
7 http://www.actionforblindpeople.org.uk/get-involved/campaigns/seeing-it-my-way/
8
Cumbria Carers’ Strategy 2009 – 2012 pg 16
Page 8 of 36should be carried out. Upon receipt of the CVI, the local authority should make
contact with the person issued with the CVI within two weeks (regardless of
whether the person has decided to register or not) to arrange their inclusion on
the local authority’s register (with the person’s informed consent). Where there
appears to be a need for care and support, local authorities must arrange an
assessment of the person’s needs in a timely manner.
Support for people who are deafblind is further defined with the need to
provide specialist assessments brought into the regulations rather than simply
part of guidance, and clarity is provided about the level of qualifications
needed by those carrying out the specialist assessments.
Page 9 of 363. Introducing the Vision Pathway
The steps below illustrate the ideal path that a service user should experience
during the initial stages of prevention, diagnosis, treatment and rehabilitation. It
is hoped that this will highlight how service gaps can interrupt, prolong, or even
impede early diagnosis, treatment or progress towards an active, independent,
and fulfilling life. In an ideal pathway a patient will leave and re-enter the vision
pathway at any stage and may repeat stages of the process as appropriate.
3.1 Vision Strategy Sight loss pathway stages
Stage 1: Promoting Eye Health
Initiatives to promote Local support for Activities to increase
healthy lifestyles and to national campaigns knowledge and
reduce the incidence of raising awareness of awareness of local
known causes of poor eye health and lifestyle service provision and
eye health e.g. related vision referral mechanisms
smoking, excessive impairment. across service
alcohol consumption, providers and
obesity, diabetes. professionals
Stage 2: Spotting the Problem
Individual, family Optometrist notes GP suspects loss of
member, carer or abnormality during vision (if sudden, needs
professional refers regular eye test. referral within one
patient to Optometrist, week)
GP or Hospital
Stage 3: Diagnosis
Optometrist refers GP refers to GP, Optometrist,
direct to Ophthalmologist Ophthalmologist refers
Ophthalmologist using (Optometrist refers to or patient self refers to
fast track system where GP) (within x weeks). a community low vision
wet-AMD is suspected Eye condition is clinic, who assesses
diagnosed patient
Stage 4: Treatment
Ophthalmologist treats patient (within Community Low Vision Clinic
x weeks) who advises whether sight provides support with visual aids and
is recoverable, will further deteriorate adaptations
or is untreatable. Patient advised
whether eligible for Certificate of
Visual Impairment (CVI)
Stage 5: Introduction to Support
Patient is referred to Patient receives Individual is signposted
and meets with Eye information on to Rehabilitation Officer
Clinic Liaison Officer emotional and for the Visually
(ECLO) or equivalent psychological support Impaired (ROVI) and
(within 2 weeks) options available voluntary sector
Page 10 of 36organisations options
for information and
support
Stage 6a: Emotional and Practical Support
ECLO/equivalent Individual is Individual begins Local Authority
advises and registered as emotional and contacts to begin
supports the blind or partially practical support social care
patient, their sighted if options via assessment
carer or parents agreeable formal or
to access (within 2 weeks) informal
benefits and counselling, and
support (within 2 support from
weeks) Voluntary Sector
organisations
Stage 6b: Emotional and Practical Support, Assessment and
Habilitation (Children)
ECLO/equivalent Local Authority Childrens Health and local
advises and Services specialist visual authority (LA) work
supports the impairment team co-ordinates closely together to
parents or carers registration, orientation and ensure that
to access mobility training and family physiotherapy,
benefits and support. Blind Children UK occupational therapy,
support (within 2 and specialist teacher for the health visitor services
weeks) visually impaired involved as appropriate are
from earliest stage. provided seamlessly
with the services
provided by the LA
Stage 7: Assessment and Rehabilitation
Specialist assessment Individual begins Day-to-day community
of individual by social rehabilitation with LA social care begins and
care to address the visual impairment carers begin receiving
specific needs (within x rehabilitation team respite care (within x
weeks) (within x weeks) weeks)
Stage 8: The Road to Independence
Individual’s Individual is Individual Individual is
health and social advised of the accesses supported to
care needs are level of care to Voluntary Sector undertake
reassessed at be provided by support, independence
regular intervals the visual activities, activities
and programme impairment team events, training (accessing
of care/rehab is and any and other transport,
adjusted purchase of services leisure,
accordingly services (within education,
x weeks) employment
Stage 9: Independence
Individual is able to live an active, independent, and fulfilling life.
Page 11 of 364. Services on the Visual Impairment
Pathway
This section has been organised to follow the ideal path that a person might
experience in relation to prevention, or on identifying eye health problems or
visual impairment that might follow.
4.1 Stage 1 – Promoting eye-health
Initiatives which promote healthy lifestyles, including increasing physical
activity, reducing alcohol consumption and stopping smoking have the
potential to improve eye health and to reduce the incidence of preventable
visual impairment associated with conditions such as obesity, hypertension,
diabetes, stroke, and some forms of cancer.
Initiatives which raise awareness of eye health amongst the general population
may increase uptake of eye examinations and screening programmes. Audit of
screening programmes may identify priority groups for targeted information.
Raising awareness of eye health, the causes of vision impairment and services
available on the eye health and sight loss pathway with health and social care
practitioners, particularly those working with high risk groups, may improve
early identification, diagnosis and treatment.
It is important that practitioners and professionals across the eye health and
sight loss support pathway are aware of services that may complement or
overlap their own service provision, which will improve the seamlessness of
services (which also has the potential to reduce costs).
4.2 Stage 2 - Spotting the Problem
The agencies described below are crucial in Cumbria’s eye-care system; it is
through visits to a local high street optometrist, or to the GP, that early signs of
eye-sight deterioration will be picked up. This means that these agencies tend
to be the first point of contact that individuals losing their sight will have with
eye-care professionals.
Local Optometrists - Optometrists play a vital role in the maintenance of
eye-health, whether they are based on the high street or in local hospitals.
Therefore, it is important that members of the community are able to access
local optometrists.
Research by RNIB has shown a tendency for people to visit their local high
street optometrist only when they sense a problem with their sight. This
lessens the ability of local optometrists to act as an early warning system for
potential eye-disease, by finding and noting abnormalities before they become
a problem. This is important in conditions such as glaucoma where the
deterioration is not reversible but can be halted by the right treatment at the
Page 12 of 36right time.9 It is also suggested that both ease of transport to a high street
optometrist and their optometrist’s perceived independence from the need to
sell spectacles both influenced the likelihood of individuals attending eye tests.
10
With numerous competing companies, and patients not limited to a specific
locality to access an eye-test, service provision is somewhat fragmented.
Therefore, it is not possible to provide statistics for the number of people who
had an eye-test within the last year.
Eye tests for users with specific needs – whilst some optometrists are known
to provide excellent services to people with dementia and to people with
learning disabilities, no review of service provision County wide has been
made.
Local GP Services - It is also possible that problems with a patient’s
eyesight might be picked up by their GP. However, the most common role for
the GP is to refer patients to the local hospital or GP with special interest
(GPwSI) for further testing and diagnosis. Hospital referrals can often be a
slow and frustrating experience for patients concerned about deterioration of
their vision. In North Cumbria, community eye clinics dealing with routine and
emergency eye problems are provided by GPwSI's with the aim of improving
local access to high quality eye care in a more timely fashion.
The NHS outcome framework has a specific outcome to improve access to GP
services (4.4i).
Other Health Related Services – It would also to be useful to look at
whether other services – such as pharmacists – may have a bigger role to play
in spotting problems and referring to the correct route locally for getting the
speediest diagnosis and treatment.
4.3 Stages 3-4 – Diagnosis and Treatment
The NHS framework identifies several outcomes that relate to the diagnosis
and treatment of long term conditions. These include ensuring that people feel
supported to manage their condition (2.1), improving people’s experience of
outpatient care (4.1) and improving people’s experience of accident and
emergency services (4.3).
The Adult Social Care Outcome Framework relating to diagnosis and
treatment states that ‘earlier diagnosis, intervention and re-enablement mean
that people and their carers are less dependent on intensive services’ (2A).
Services available in Cumbria include the following:
9 The barriers and enablers that affect access to primary and secondary eyecare services across
England, Wales, Scotland and Northern Ireland: A Report to RNIB by Shared Intelligence, Carol Hayden,
RNIB Community Engagement Projects, January, 2012.
10 The barriers and enablers that affect access to primary and secondary eyecare services across
England, Wales, Scotland and Northern Ireland: A Report to RNIB by Shared Intelligence, Carol Hayden,
RNIB Community Engagement Projects, January, 2012.
Page 13 of 36Community Low Vision Service – Cumbria has a community low vision
service that picks up on individuals who have a visual impairment that does not
require or is not viable for hospital treatment, and those who have completed a
course of treatment by an Ophthalmologist but do not need further hospital
treatment. Low vision services are an important method of early detection of
new eye conditions, in discharged patients and the early onset of eye
conditions in patients who have not yet been referred to an Ophthalmologist.
Low Vision clinics are run all around the County for people who have seen an
optician within the last 6 months, wear any spectacles prescribed, but still
struggle to read or see the television. People are assessed at the clinics for
magnifying aids and provided with what they need (subject to budget
constraints) on loan. Advice and support on remaining independent is given.
The clinics are run by a team that includes a clinician, a ROVI from the County
Council and a representative of the local sight loss organisation.
Orthoptists - Orthoptists specialise in defects in binocular vision and eye
movement abnormalities. Although orthoptists work with patients of all ages,
because their profession tends to specialise in areas such as lazy eye or
squints, many have a specific role of preventative screening and treatment of
children, in addition to the work they undertake in hospitals and local
communities.
GP with Special Interest - These are community based eye clinics run by
GP's who have obtained a specialist qualification in ophthalmology. Currently,
clinics are based in Carlisle, Penrith, Wigton and Workington. They provide
general routine and urgent ophthalmology outpatient services for adults eg
acute red eye, glaucoma, diabetic monitoring in patients not suitable for the
screening service and accept GP and optometrist referrals. Eyelid surgery is
also undertaken in community operating facilities. All referrals are triaged
leading to about 90% of referrals being managed solely in the community
setting. There are good working relations with the local Hospital Eye Service
and if a Consultant opinion or treatment is required, the patient is referred on
to the appropriate service. Community GPwSI services offer approximately
5000 outpatient appointments per annum and there are plans to improve
access by establishing clinics in Keswick and Cockermouth as well as
expanding the services currently provided e.g. laser capsulotomy and wet
AMD management.
Ophthalmology Provision – The hospital trusts with specialist
Ophthalmology departments serving Cumbria are the University Hospitals of
Morecambe Bay NHS Foundation Trust and the North Cumbria NHS Hospitals
Trust. Clinics are held in Carlisle Infirmary, West Cumberland Hospital,
Furness General Hospital and Westmorland General Hospital.
As part of the Better Care Together initiative in the south of the County, an
Ophthalmology Pathway Redesign Group has been convened, looking at the
business case for a service redesign which would move more activity away
from secondary care into the community through greater use of optometrists.
Page 14 of 36In Cumbria’s hospitals, there are facilities to treat the common eye diseases –
Glaucoma, Cataracts, Age-related Macular Degeneration – but complications
or less common diseases will entail travel to specialist facilities.
There is a specialist facility at the Manchester Royal Eye Hospital to which
patients from South Cumbria are referred and at the Royal Victoria Infirmary,
Newcastle (Newcastle Eye Centre) to which those in the North of Cumbria are
referred. Patients may also be referred further afield to other specialist facilities
such as Moorfields Eye Hospital in London.
Travel even to the Cumbria hospitals can be difficult for people in this largely
rural county. Travelling to Manchester or Newcastle can add costs that people
excluded from financial help find difficult to meet. It is accepted that not all
specialist services can be provided locally, but the issue of travel and costs
needs to be looked at again.
4.4 Stages 5-6 – Emotional and Practical Support
Eye Clinic Liaison Officer (ECLO) - The role of an ECLO is to provide
practical support for newly diagnosed patients. For instance, an ECLO should
be able to signpost social services and local voluntary organisations that can
provide additional support or information on benefit entitlement and other
forms of support.
ECLOs can also provide initial emotional support for patients coming to terms
with their diagnosis, which has been identified as a service not always offered
by time-pressed Ophthalmologists. Ideally, an ECLO will remain with a patient
throughout their journey towards re-establishing independence life.11 Research
by City London University suggests that a majority of professionals (90% of
clinical staff and 63% rehabilitation officers) believe that ECLO’s significantly
improve patient experience. ECLOs may also be known by other job titles, but
will be providing similar role in support and signposting of the newly diagnosed
and those undergoing treatment for eye conditions.
There is a project taking place in Westmorland General Hospital, providing an
ECLO service 2 days a week for a year and a volunteer ECLO project taking
place in Furness General Hospital providing a service 5 days a week. The rest
of Cumbria does not currently have an ECLO or equivalent providing support
to those who have newly diagnosed eye condition or visual impairment. The
role is key to ensuring that early registration takes place, that the newly
11 http://www.rnib.org.uk/aboutus/research/reports/2011/eclo_role_report.doc Cost implications for the ECLO role -
The average price of the ECLO training course is £760.00 based on information collected from the ECLO survey. The
average annual cost of employing an ECLO is £38,170 pro rata. This includes salary costs, employer national
insurance and superannuation contributions, overheads such as telephone, heating and stationary, capital overheads
such as building and fittings costs and one time training and set up costs. The cost of an ECLO per patient per contact
is £17.95 assuming an average of 9 patients are seen per day, in a 42 week year. The costs involved are likely to rise
every year in line with inflation and this must also be borne in mind. Costs are also likely to be 15%-20% higher in
London.
Page 15 of 36diagnosed are provided with and signposted to early support and that there are
accurate figures to inform the Public Health outcome indicator.
Ensuring Early CVI Registration – it is important that all those who are
eligible to be CVI registered are identified at the earliest opportunity. The role
of the ECLO is one key aspect that enables this to happen. However,
Optometrists, Ophthalmologists, Local Authority and the Voluntary sector need
to work together more closely to share information and statistics, and develop
cross sector working practices that will ensure the early identification of all
those who are eligible for registration, even if they are not currently at any
stages of the vision pathway.
Psychological, Emotional and Practical Support – the ECLO or
local sight loss organisation is able to signpost to or provide initial support at
the time of diagnosis or need. In addition to this support, other emotional and
psychological support includes:
Cumbria’s Improving Access to Psychological Therapies (IAPT) service
is delivered by Cumbria Partnership NHS Foundation Trust and is
known as First Step. It is not known how much use is made of this
service by people with visual impairments and it may be that there is the
potential for greater use of this service;
Mind provide counselling services in the County, but again, it is not
known how much this service is used by people with visual impairments
and it may be that there is potential for greater use of this service.
4.5 Stage 7 – Assessment, Habilitation and
Rehabilitation
There are several outcome measures within the Adult Social Care Outcome
Framework that relate to the assessment and rehabilitation stages of the
pathway. These include:
Everyone has the opportunity to have the best health and wellbeing
throughout their life, and can access support and information to help them
manage their care needs (2A) – this indicator also refers to the earlier
diagnosis indicator at stage 5 in the pathway;
People know what choices are available to them locally, what they are
entitled to and who to contact when they need help (3C);
People, including those involved in making decisions on social care,
respect the dignity of the individual and ensure support is sensitive to the
circumstances of each individual (3D);
The proportion of people who feel safe (from harm, injury, abuse and able
to manage risk (4A);
The proportion of people who use services who say those services have
made them feel safe and secure (4B).
ROVI service – The Rehabilitation Officers for the Visually Impaired
(ROVIs) are based in Cumbria County Council Adult Social Care teams that
cover the 6 Adult Social Care Districts in Cumbria. There is one full time
equivalent ROVI covering two Districts. They work with people over the age of
18 who are visually impaired and people who have dual sensory loss. They are
also involved in the transition process for young people moving from Children’s
Page 16 of 36through to Adult services and contribute to the Education and Health Care
Plan for individuals who have a Statement of Special Educational Needs and
are eligible for further education up to the age of 25. The main tasks and
responsibilities of the ROVIs are to assess needs and support with gaining or
re-gaining independent living skills, and mobility and orientation.
Referrals to the ROVIs can be self referral, referral by agencies such as the
local sight loss organisation, or from the hospital/GP. ROVIs are employed by
Cumbria County Council. They support the low vision service and work with
people accessing services through that route. The ASC Locality Teams
automatically contact anyone being registered as sight impaired or severely
sight impaired to offer assistance.
Children’s Sensory Loss and Habilitation Services – Services
available to children include specialist teachers for the visually impaired from
Cumbria County Council Children’s Services, who will make contact with
parents from the time when sight loss is diagnosed ( this may be from birth).
The specialist teachers will assess for and supply any low vision aids required.
Health and the local authority work closely together to ensure that
physiotherapy, occupational therapy, health visitor services as appropriate are
provided seamlessly with the services provided by the local authority.
Habilitation services are currently provided through a contract with Blind
Children UK.
Transition arrangements from Children’s services to Adult services are not
always seamless and this is an area that requires review.
Adult Social Care Reablement Service – Cumbria County Council
provides a reablement service which may be a useful service for some people
with sight loss to access if appropriate. The service is free for up to 6 weeks or
less for those who would be able to benefit from reablement and regain their
optimum independence through care and support using an enabling approach.
Reablement does not provide specialist rehabilitation as does the ROVI
service.
Third Sector Organisations – There are five local sight loss
organisations in Cumbria – Barrow and Districts Society for the Blind, Carlisle
Society for the Blind, Eden Sight Support, Sight Advice South Lakes and West
Cumbria Society for the Blind. Between them, they cover the whole of the
County and they form a consortium – Cumbria Societies for the Blind. They
provide a range of practical support, including resource centres where people
can find a wide range of aids and equipment, support groups, home visiting,
befriending, social events and activities. Some run courses for those newly
diagnosed with sight loss, and help with computers and technology: all run
specialist dual sensory loss support groups.
Membership of these organisations allows people with visual impairments to
express their views and influence service delivery.
Page 17 of 364.6 Stage 8 - Independence and Accessibility
Key services in Cumbria are less accessible than other areas of England.
There is a significant level of variation between districts with poor accessibility
to key services in Eden and South Lakeland and good accessibility in Barrow.
In particular, the proportion of residents in Cumbria able to access key
services within a “reasonable time” is lowest for hospitals.12
Transport - Cumbria has a Transport Strategy with an Equality of
Opportunity statement which includes spending money on tactile surfaces,
Rural Wheels, Urban Wheels, and on making timetables available in large
print.13 There remain concerns by people with visual impairments about the
growing use of “shared space” in town centres where pedestrians and cars mix
and it will be important that Equality Impact Assessments are carried out in a
timely and thorough manner to make sure changes are properly thought
through.
Specific considerations about modes of transport for people with visual
impairment include:
Buses – bus companies need to provide their staff with visual impairment
awareness training. There need to be talking buses throughout the County to
ensure that people with visual impairments can confidently use this form of
transport.
Rural Wheels and Urban Wheels – both these forms of transport are
very useful to people with visual impairments, enabling them to make journeys
independently at reasonable cost. However the number of journeys permitted
each week is limited.
Taxis and Mini Cabs – these are widely relied on by people with visual
impairments and many (but not all) drivers are very helpful in escorting people
from their door to the taxi and on to the entrance of their destination. But this is
an expensive form of transport for the lengthy journeys that people have to
make in this largely rural county.
Trains - Platform staff have undertaken training to support people with a
visual impairment and can provide support with travel and escort whilst in the
train station for people with a disability when this is requested. This works very
well and needs to be better known about. However, many stops in the County
are unmanned - without platform staff train travel is less accessible than it
could be.
Leisure and Shopping - Local sight loss organisations provide social
activities and events for people with visual impairments across the County.
In addition there are leisure centres run by local Councils which aim to be
accessible. There are a number of theatres in the County: Theatre by the Lake
12
Cumbria Intelligence Observatory Briefing – Accessibility Statistics Cumbria and Districts
2011 pg 1
13
Moving Cumbria Forward – Cumbria Transport Plan Strategy 2011 – 2026 pg 26
Page 18 of 36in Keswick provides audio transcribed performances and touch tours, and this
is a practice which other theatres could follow.
Action for Blind People runs a hotel in Windermere which is a facility that
people from Cumbria as well as outside the area find useful.
Employment - Evidence shows that 66% of people with a visual impairment
of working age are not in employment, and that Government schemes fail to
place blind and partially sighted people in work and that training and
employment opportunities for those furthest from the labour market are
dwindling.14
Job Centre Plus is one of the main sources of employment in the County.
They provide support into work, access to benefits and provide specialist
support for those who are disabled.
Action for Blind People is an organisation that provides telephone support to
people with a visual impairment with job retention, self employment, work
experience opportunities and provides careers guidance across the UK. They
also provide advice on support for travelling to work and support available in
the workplace.
Children’s Education – Cumbria Children’s Services has a SEND
(Special Education Needs and Disabilities) Teaching Support team, which
includes specialist teachers for the visually impaired. The policy of the local
authority is to have children with a visual impairment taught in mainstream
schools.
Further Education – Cumbria has colleges in all the major urban centres.
Higher Education – Higher education in Cumbria is offered by the
University of Cumbria.
Adult Education/Lifelong Learning – There are a number of centres
which offer a diverse range of vocational and practical courses for adult
learners in Cumbria.
Welfare Rights - Understanding the entitlement to welfare rights and
benefits and access to benefit entitlement is an important way of ensuring
independence for people with a visual impairment.
Accessibility - A recurring theme that runs through the all stages of the
pathway is the need to ensure that information is produced in an accessible
format and imparted to patients and service users in a timely and accessible
way. Examples of this include when accessing the GP, receiving information
about appointments, understanding eye conditions, accessing benefits/seeking
advice, dealing with household bills, etc. Therefore, work needs to be
undertaken to ensure that statutory, voluntary and commercial organisations in
Cumbria are providing both accessible information and accessible services.
14
http://www.rnib.org.uk
Page 19 of 365. Costs, Trends, and Prevalence of Visual
Impairment
There are 3,100 people registered with a visual impairment in Cumbria; 1,400
are registered as Severely Sight Impaired (blind) and 1,700 as Sight Impaired
(partially sighted).15
However, for a number of reasons, not every person with a visual impairment
affecting their day-to-day life is registered as sight impaired or severely sight
impaired. There are a number of different ways of calculating the real number.
The Cumbria JSNA 2012-15 shows numbers in 2011 with moderate or severe
visual impairment as 9,116 projected to increase to 14,498 by 2030 (source
POPPI)16.
Clearly, a more comprehensive registration process would help service
providers plan their services more effectively, it would also help empower
people living with a visual impairment to push for better low vision services by
illustrating their widespread need in Cumbria.
In 2010/11 £22.3 million was planned to be spent by Cumbria Primary Health
Care Trust on ‘problems of vision’.17
NB: this refers to the cost of low vision services such as hospital admission for
cataract surgery or glaucoma treatment. This does not include the associated
costs to the NHS for accidents that arise from visual impairment, eg increase
in falls by the elderly.
There are 499,800 people living in Cumbria, 21.7% are aged 19 and under,
50.3% are aged 20 - 59, 18.7% are aged 60 - 74, 6.9% are aged 75 – 84 and
2.7% are 85 +. The ratio of men to women in the county is 49.2% male and
50.8% female, and 3.5% are from black or ethnic minority backgrounds. 18
5.1 Future trends in visual impairment and predicted
costs
Figure 1 - Predictions of the number of people who will be living in the
County broken down by eye-condition type.19
15 NHS Information Centre CVI registration figures March 2011 (the figures are compiled triennially)
16
POPPI data quoted in Cumbria JSNA 2012
17 NHS DH Programme budgeting tool 2010/11
18 ONS Statistics 2011 Census
19
The National Eye Health Epidemiological Model (which gives figures for 2001 and allows
projections based on population/demographic changes). Please note that the projections are
based on available ONS predictions of population, which includes a gender breakdown but
does not include a breakdown of ethnicity: the Model includes a greater weighting to some
ethnic groups: these figures may therefore be an underestimate.
Page 20 of 36Condition Prevalence Predicted Predicted
in 2001 Prevalence Prevalence
in 2012 in 2020
Age Related Macular 4,486 5,388 6,486
Degeneration (AMD)
Cataracts 4,815 5,869 7,200
Glaucoma 4,762 5,650 6,555
Age Related Macular Degeneration (AMD): the figures shown do not
include all those with AMD – they exclude those with early stage dry AMD
whose vision will not be seriously impaired. Around two thirds of those shown
here will have wet AMD (a condition that is usually treatable if diagnosed at an
early stage) and around one third will have advanced dry AMD (which isn’t
treatable but will require low vision services).
Cataracts: the figure shown is the lowest estimate in the model – we are
only interested in the number experiencing vision problems that will need
treating, not all of those who have cataract as this is a natural ageing process
of the eye and may never need an operation.
Glaucoma: the figure shown is the mean estimate of those with glaucoma –
it does not include those with ocular hypertension (OHT). But although OHT is
technically not sight threatening, it does have a service burden ie 6-12 monthly
monitoring with or without drops so there are implications for the NHS – if we
include those with OHT, the figure is slightly more than double those shown.
Diabetic maculopathy and diabetic retinopathy: The Cumbria
JSNA shows the number of diabetics in the County to be approximately
12,920. Around 7%20 of diabetics have diabetic macular oedema and may be
eligible for treatment with antivegF injections. This gives us a figure of 904 in
Cumbria.
Estimates suggest that 80% of people living with diabetes for longer than 10
years will develop some degree of diabetic retinopathy.
The NHS Atlas of Variation of Healthcare shows a rate for diabetic retinopathy
of 5.4 CVI registrations per 100,000 populations in Cumbria which is high.
It is estimated that the 9,116 people currently living in Cumbria with a visual
impairment will have increased by 22% by the year 2020. This would be an
extra 2006 people living in the community with visual impairment that impinges
on their day-to-day life.
The reasons for this increase will be discussed in detail below but the main
reasons for this increase are; an ageing population and certain lifestyle factors
that place people at increased risk of visual impairment.
20
British Journal of Ophthalmology 96 (3) pg 345 - 349
Page 21 of 366. Main Diagnoses of Visual Impairment
6.1 Age Related Macular Degeneration – this is the most
common form of sight loss in the UK and mainly affects people aged 50 and
over. Estimates suggest that there are roughly 5,388 people in Cumbria living
with Age Related Macular Degeneration.
6.2 Glaucoma - this is caused by optic nerve damage, although early
diagnosis and regular treatment can halt its progression. Estimates suggest
that there are roughly 5,650 people in Cumbria living with Glaucoma.
6.3 Cataracts – are also common in older people, but can be treated
through surgery. Estimates suggest that there are roughly 5,650 people in
Cumbria living with Cataracts.
6.4 Diabetic Retinopathy – is a complication of diabetes, and is also
the leading cause of blindness in people under the age of 65. Estimates
suggest that there are roughly 12,92021 people in Cumbria who suffer from
diabetes and 80% of people living with diabetes for longer than 10 years will
develop some degree of diabetic retinopathy.
6.5 Accidents - changes in vision can also result from optic nerve
damage caused by brain injuries. The most common cause of brain injuries is
a blow to the head during car and motorcycle accidents. Research from the US
has also suggested that visual impairment tends to be higher amongst
veterans given the higher likelihood of bodily injury, this phenomenon has
become known as ‘blast trauma’.22
6.6 Cancer - there are several cancers that can cause problems with
vision. The most direct cause is eye-cancer, which can necessitate the
removal of one or both eyes. Regular eye check-ups can help spot the
problem early and prevent the need for major surgery. Nasal and sinus
cancers may also cause problems with vision, as can cancer of the
nasopharynx (the tube that connects the nose to the back of the mouth) and
brain tumours.23
6.7 Neurological Conditions - there are also several neurological
conditions that are closely associated with visual impairment, the most
common of which is Multiple Sclerosis (M.S.). This is a condition where the
immune system attacks the brain, spine and optic nerves. One of the first
symptoms of M.S. can be the loss or blurring of vision, therefore it is important
that eye-health professionals are able to recognise symptoms and refer
patients as necessary.
21
Cumbria Joint Strategic Needs Assessment 2012 pg 57
22 http://www.aao.org
23 For more information on sight loss and cancer consult: http://www.cancerresearchuk.org/home/
Page 22 of 366.8 Strokes – are similarly a risk factor in the development of visual
impairment. Around 60% of stroke survivors have some form of visual
impairment, such as loss of visual field, blurred vision, double vision and
‘tunnel’ vision.24
The Cumbria Stroke Partnership estimates that around 600 people a year
survive a stroke in Cumbria25 so this gives us a figure of around 360 each year
developing vision problems.
24 For more information see http://www.rnib.org.uk.
25
www.cumbria.gov.uk/adultsocialcare/partnerships/stroke
Page 23 of 367. Socio-Economic Factors
7.1 Deprivation - Cumbria is a county with pockets of deprivation and
affluence . It is ranked 85th out of 149 counties for levels of deprivation in
England. Overall, around 16% of the population live in areas which are
amongst the most deprived in the country, yet problems are often masked by
statistical averages. Areas of significant deprivation include Barrow in Furness,
Carlisle, Cleator Moor, Distington, Frizington, Maryport, Whitehaven and
Workington. 26
Research has shown that three out of four people with visual impairment live
in, or on the margins of, poverty. 27 This means that those living with a visual
impairment are also more likely to be the some of the most economically
vulnerable in the county. Those with a low life expectancy are also more likely
to develop a visual impairment later on in life, due to poorer health indicators
throughout their lives.
7.2 Ethnicity – can also be attributed to an individual developing a visual
impairment.
Glaucoma - is more common in people of African, African-Caribbean, South-
East Asian, or Chinese origins.
Cataracts – are more common in people of Asian origin.
Diabetic Retinopathy – is more common in people of African, African-
Caribbean, or Asian origins.
However, research by Sight Loss UK has suggested that information
campaigns targeting black and ethnic minority populations can be highly cost
effective in prevention campaigns.28
It should be noted that Cumbria has a low proportion of residents from black
and minority ethnic (BME) groups at 4.9% compared to 17.2% nationally. The
district spread of BME population ranges from 3.7% of the population in
Barrow to 6.3% of the population in South Lakeland. 29
26
Cumbria JSNA 2012
27 Unseen: neglect, isolation and household poverty amongst older people with sight loss, RNIB, March,
2004,
28 Darwin Minassian and Angela Reidy Future, Sight Loss UK 2: An epidemiological and economic model
for sight loss in the decade 2010-2020, Epivision and RNIB, 2009.
29
Cumbria JSNA 2012
Page 24 of 368. Life and Lifestyle Factors
Lifestyle factors have a significant bearing on the prevalence of visual
impairment in a local area. The main factors are listed below with an indication
of how we might expect their relevant importance to increase (or decrease) in
the next few years.
8.1 Ageing – on a positive note, improved public health, nutrition, and
lifestyle means people in the UK are living longer. This is no exception in
Cumbria, where the number of people aged 60 + has increased by 23,700 over
the past 10 years. 30
Unfortunately, 80% of those who are blind or partially sighted are aged 60+. As
a consequence, the number of people who suffer from visual impairment is
likely to increase from 9,116 in 2011 to 14,498 in 203031. Ageing increases the
likelihood of Macular Degeneration, Cataracts, and Glaucoma.
This will represent a significant challenge for providers of low vision services in
the immediate future. An increase in older people in the community will not
only increase the number of people seeking help from services but also alter
the needs of those seeking help. Rehabilitation for visual impairment in older
people may well need to be carried out in with reference to other age related
health problems, such as poor mobility or dementia.
There is a specific Public Health outcome indicator for preventable sight loss
(4.12). However, there are additional Public Health, NHS and Adult Social
Care indicators that can be addressed as part of this strategy.
The Public Health outcome indicators for age relevant to vision include 1.19
(people’s perception of community safety), 2.24 (falls and fall injuries in the
over 65’s), health-related quality of life for older people (4.13), and hip
fractures for over 65’s (4.14).
The Adult Social Care indicators for ageing include the proportion of older
people (65+) who are at home 91 days after discharge from hospital into re-
enablement/rehabilitation services (2B).
8.2 Smoking - the link between smoking and macular degeneration is
well documented. Not only are smokers 50% more likely to develop macular
degeneration, but they are also likely to develop it at an earlier age. On the
other hand, the cessation of smoking (for a period of 20 years) has also been
shown to reverse the damage caused by smoking.32 Cumbria’s smoking
30
ONS data mid 2001 – mid 2011 quoted by Cumbria Observatory
31
POPPI data quoted in Cumbria JSNA 2012
32 ‘Further Observation on the Association Between Smoking and the Long-term Incidence and
Progression of Age-related Macular Degeneration: The Beaver Dam Eye Study’, Ronald Klein, Michael
D. Knudtson, Karen J. Cruickshanks, Barbara E. K. Klein, Archive of Ophthalmology. 2008, vol. 126, no.
1, pp.115-121.
Page 25 of 36prevalence rates stands at 21.5%, compared to a national prevalence rate of
21.2%.33
The Public Health Outcomes Framework indicators for smoking include
smoking prevalence of under 15 year olds (2.9) and smoking prevalence of
adults over 18 years old (2.14). There is also a specific indicator for smoking
status at the time of child delivery (2.3).
It is noted that there is no outcome framework indicator for smoking between
the ages of 15-18.
8.3 Obesity - has been shown to be a risk factor for all four major eye-
diseases, Macular Degeneration, Glaucoma, Diabetic Retinopathy and
Cataracts.34
Given recent trends in obesity, this is a particular point of concern. In Cumbria
obesity has increased rapidly over the last 15 years and shows no sign of
stopping. In 2008, 23.2% of adults were obese and applying the Foresight
forecasts to the forecasts of the Cumbrian population we can expect a further
26% increase in numbers between 2015 and 2025.35 This indicates that
obesity related eye problems will increasingly become a major eye-health
issue.
Indicators relating to obesity in the Public Health outcome framework include
excess weight in 4-5 year olds and 10-11 year olds (2.6), diet (2.11), excess
weight in adults (2.12), and the proportion of physically active and inactive
adults (2.13). There is also an outcome for the utilisation of green space for
exercise/health reasons (1.16).
8.4 Alcohol - there is clear association between excessive consumption
of alcohol over a sustained period of time and the development of all four main
eye-diseases, although the reason for this is not currently clear. In addition,
alcohol consumption by women during pregnancy has also been linked to
ocular abnormalities in children..36 Accidents resulting in visual impairment are
often linked to intoxication.
Recent research on alcohol use amongst older people also suggests that
alcohol use amongst older people tends to be higher despite a lower tolerance
to its effects. Many health conditions and hospital admissions are also related
to alcohol use, which may in turn reflect social isolation, bereavement and loss
of status in older age.37
33 Cumbria JSNA 2012
34 ‘Obesity and Eye Disease’, Cheung and Wong, Survey of Ophthalmology, vol.52, issue. 2, pp. 180-
195.
35
Living Well in Cumbria pgs 60 and 62 – supporting paper for Cumbria JSNA
36 ‘Alcohol and Eye-Disease: A Review of Epidemiologic Studies’, Hiratsuka and Li, Journal of Studies on
Alcohol and Drugs, 2001, May, Vol.62, issue 3.
37 http://www.ias.org.uk
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