Eyecare for people with learning disabilities

People with a learning disability are at a high risk of eye problems compared with the rest of the population. This paper covers four areas:

• The prevalence of sight problems among people with learning disabilities and the barriers they face in accessing eye care services
• Information for people with learning disabilities and their carers
• What can NHS England do to improve access to eye care for people with learning disabilities? 
• Work in the other nations

The prevalence of sight problems among people with learning disabilities and the barriers they face in accessing eye care services

Learning disability is defined as a “reduced intellectual ability and difficulty with everyday activities, for example household tasks, socialising or managing money, which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.”¹

Approximately 1.5 million people in the UK have a learning disability², and learning disability is often described in terms of mild, moderate or a severe or profound and multiple learning disability (PMLD). Common conditions include Down’s Syndrome, where all individuals will have some degree of learning disability, and neurological problems at birth, such as cerebral palsy, that may give rise to global developmental delay. Autism spectrum disorder (ASD) is a common neurodevelopmental disorder that can be associated with a learning disability.

The risk of eye conditions is much greater for those with learning disability.  Adults with learning disabilities are 10 times more likely to have a serious sight problem, and this increases to 28 times for children.³

However, many people with learning disabilities experience barriers in accessing eye care services. Reasons for this include:

• Parents or carers thinking the person won’t benefit from a sight test, or won’t be able to have a sight test if they can’t read or have weak verbal skills
• Symptoms of sight problems might not be noticed due to “diagnostic overshadowing” – this is where a problem is wrongly thought to be due to the person’s learning disability, rather than a separate condition
• People with learning disabilities may find an optical practice setting, or any new or unfamiliar place, off-putting and intimidating or may have had negative experiences in the past

Information for people with learning disabilities and their carers

You should have a sight test every two years, or more often if your optometrist says so. 

The charity SeeAbility has some information on their website to help you book a sight test, or to help your carer book a sight test for you, as well as a searchable database of practices. SeeAbility also has a form called ‘telling the optometrist about me’, which you can fill in and give to your optometrist before you have your sight test. You can download the form from SeeAbility’s website.

You can also use the following websites to find an optometrist or opticians practice in your area:

• The NHS Choices website if you are based in England
• The HSCNI website if you are in Northern Ireland
• The NHS inform Scotland website if you are in Scotland
• The Wales Eye Care Services website if you are in Wales

What can NHS England do to improve access to eye care for people with learning disabilities?

We believe the current system does not serve people with learning disabilities well.

SeeAbility has long campaigned for reform of eye care for people with learning disabilities and is calling for several changes to General Ophthalmic Services (GOS), the contract for NHS sight tests.

The changes they are calling for include for all people with a learning disability to be automatically eligible for an NHS-funded sight test, as is the case for other patient groups with a high prevalence of eye conditions. They also want to see appropriate levels of funding for sight tests for people with learning disabilities.

These changes together would enable longer appointments and would allow for appointments to be split over different days. This would also enable familiarisation visits, which, as mentioned above, are crucial for people who may find unfamiliar places intimidating.

This community programme would be supported by a national sight testing programme in special schools, as children with more severe learning disabilities often attend special schools.

SeeAbility currently runs a project to carry out sight tests in special schools, but this is not universal in England and does not have sustainable funding.

SeeAbility currently holds a contract to provide services for 3000 children across 25 schools.

Since its commencement, around 45 amended GOS additional service contracts to provide the service have been issued across England. The service is currently funded by NHS England.

However, NHS England informed providers in August 2022 that ‘the POC (Proof of Concept) will cease on 31 March 2023, as will all existing contracts in place at that date.’

The South West Commissioning Support Unit has been commissioned to carry out an evaluation of the proof of concept (POC) service, which currently provides eye care to children in day and residential special schools in England.

The AOP is researching alternative sources of funding that can be made to NHS England and the Department of Health and Social Care, should the need for alternative funding arise.

The AOP has also written to the review board in order to emphasise the importance of the SSECS.

Work in the other nations

Wales

NHS Wales Eye Health Care Future Approach for Optometry Services builds on the progress made through:

• The Eye Health Care Delivery Plan 2013 to 2020
• The implementation of national Wales Eye Care Services

In April 2018, the Welsh Government agreed funding for the All Wales School Pupil Eye Care Service (SPECS). The aim of the project is to develop all service infrastructure and a delivery model for the provision of sight tests in special schools.

SPECS will be delivered with the contract reform. Full details of the new plan are expected around the middle of 2023. The SPECS pilot has happened, the evaluation completed and the planned legislative change will now need to happen as a sight test is part of the examination. One of the clinical implementation groups will be reviewing the pathway. 

Northern Ireland

Ulster University researchers funded by Action Medical Research have evaluated the implementation of the SeeAbility framework for vision testing children in special education. The study investigated unmet visual need in special schools in Northern Ireland, and benefits of intervention and communication of results with people involved with the child, evaluating teacher and parent experience and behaviours in the classroom.  Findings are that 50% of children had one or more vision problems that had not previously been identified.  Children who were provided with an intervention had improved classroom behaviour and parents and teachers were very positive about the benefit of in-school vision assessment.

Work is ongoing with the Health and Social Care Board and Public Health Agency in Northern Ireland for the roll-out of a vision assessment service in special schools in Northern Ireland, with discussions regarding how this could be funded.

In addition, in some day centres in Northern Ireland, optometrists carry out sight tests for adults with a learning disability.

Scotland

All patients are entitled to an NHS examination in Scotland. Following regulatory changes introduced on 1 October 2018, optical practices can now claim for a supplementary appointment for patients with complex needs. This will help overcome the barriers people with complex needs experience in accessing eye care services, by allowing patients to have longer or extra appointments. An e-learning programme 'Simple steps for better testing of individuals with complex needs' is available from NHS Education for Scotland for people who would like additional training. Some Health Boards also provide a service where an optometrist can visit children in special schools and provide examinations there. Scotland was the first of the UK nations to implement changes to community services at a national level for people with learning disabilities.

References

1. MENCAP What is a learning disability?
2. Office for National Statistics, Learning disability prevalence rates from Public Health England (2016) and population data (2020)
3. Public Health England (2020) Eyecare and people with learning difficulties: making reasonable adjustments
4. The SEE project

Read the rest of the AOP position statements

December 2022