Eye health and vision problems in people with learning disabilities are often not diagnosed. Katrina Venerus of the Local Optical Committee Support Unit says more specialist services are needed:
For the millions of people in the UK who wear glasses or contact lenses, being able to correct vision problems is something that’s hard to imagine living without. And when something goes wrong with the health of our eyes, we expect to be able to have it addressed quickly and conveniently.
Yet for people with learning disabilities, these everyday treatments – so important for a good quality of life – are often not provided in ways that meet their needs. As a result, many people are living with eye health problems that would be easily treated if appropriate services were available.
This had long-term consequences for Josh, a 21-year-old man living in London, who has profound learning difficulties. Josh uses a wheelchair and was assumed to have curvature of the spine as he always faced downwards with his nose just a couple of inches above his wheelchair’s tray. When an eye test was eventually conducted, it showed that Josh was in fact highly short-sighted: something carers and health professionals had not previously realised. When his glasses were delivered and put on his nose for the first time, Josh lifted his head, looked across the room and grinned. He now sits up straight, interacts with those around him and his communication skills continue to develop.
Josh’s case appears to be worryingly common. Adults with learning disabilities are 10 times more likely to have serious sight problems than other people, yet fewer than one in 25 adults with learning disabilities in England have access to eye health services designed for their needs.
This means, around 980,000 of England’s 1,005,000 learning disabled adults may be missing out on simple and low-cost treatment that could transform their lives. Sight problems are difficult for anyone. But for adults with learning disabilities, loss of vision can be particularly difficult. Many do not know they have a sight problem or, even if they do, are not able to tell other people about it. It does not always occur to their friends, relatives and supporters to wonder whether they have problems with their vision.
A different way of providing eye health services
Around six in 10 people with learning disabilities are short-sighted, long-sighted or astigmatic, and need help to see. Many need specialist support to make sure they can access NHS sight tests and, receive suitable glasses if they have a vision problem.
Diagnosing sight problems in adults with learning disabilities can be more difficult than it is with other patients. Patients often need longer than the allowed standard sight test to become familiar with new surroundings, equipment and people. This is a challenge when most optometrists have busy schedules and little room for flexibility.
To address this problem, some clinical commissioning groups (CCGs) have now introduced a different way of providing eye health services for learning disabled adults. These groups have commissioned services for people with learning disabilities that are designed to build patients' confidence, help them relax and ensure the tests are effective without being stressful.
Appointments are much longer than the standard eye test – up to 45 minutes – giving enough time for practitioners to explain procedures and equipment to both the patient and supporters. Sometimes patients visit the practice in advance to become familiar with the environment, and repeat visits are encouraged if procedures cannot be completed during the appointment. Easy-read materials designed by people with learning disabilities are sometimes provided, which explain how these services work.
The final stage can include a post-test feedback form, designed to make sure important information is passed on to others who need it. Supporters and GPs receive the information and can pass this on to other healthcare professionals providing care to the patient later on.
These services have changed people's lives. Josh was relatively lucky, in that he lived in an area where specialist services were provided. Having access to these meant that his short-sightedness was eventually addressed, transforming his experience of the world.
Yet these tailored services are available in just five places – most of them in London, through CCGs in Barking and Havering; Bexley, Bromley and Greenwich; East London and the City, and Merton, Sutton and Wandsworth; with a new service opening in Durham Dales, Easington and Sedgefield. These inclusive services provide the standards of eye care that most people take for granted. They should be available to everyone who needs them, not just the lucky few who live in the right places.