Eye Health Care for People with Learning Disabilities

A staggering one in three people with a learning disability has a sight problem, yet few get regular effective sight tests, according to SeeAbility, formerly the Royal School for the Blind. There are estimated to be over a million people with a learning disability in England and this group is more likely to have eye problems than the general population. Unidentified sight problems, lead to reduced quality of life, sight loss which could have been prevented and increased dependency. Read on to find out the positive actions that are taking place to change this situation and how you can make a difference.

Lack of access to regular eye care puts people with learning disabilities at risk of unnecessary sight loss. What’s more, this sight loss has consequences. Someone who is losing sight yet unable to communicate what is happening can become confused or angry, causing behavioural problems. Someone who has previously been active and mobile may lose confidence, stop going out or give up on activities that they have enjoyed as their sight diminishes. As a result a person can need increasing care and support.

Shockingly, much sight loss in people with learning disabilities is unnecessary. Some people could have their vision and quality of life improved with a simple pair of spectacles. Reading glasses don’t just help with reading: they can help with any close task such as eating, and almost everyone in their 50s and older will need them. Other people with conditions like cataract could benefit from much clearer vision if they were offered a straightforward operation with excellent success rates. People with learning difficulties and a condition such as glaucoma are at risk of irreversible sight loss without medication: glaucoma is a condition that can be detected at an eye examination but is symptomless for the person until significant irreversible sight loss has occurred.

There are barriers to accessing eye care for people with learning disabilities, but much work is going on to alleviate these problems. Pilots are taking place in different locations to supply optometrists with additional training and useful equipment so that they can offer the most effective eye test for a person with learning disabilities. Work is being done with self-advocacy groups to raise awareness amongst people with learning disabilities of the need for eye care. Leading eye care charity SeeAbility has created a directory of optometrists and the facilities that they offer, available from www.lookupinfo.org, as well as forms to help carers gather information about the person before a sight test and understand the results afterwards. And in Tower Hamlets a pilot has been commissioned for five years to provide enhanced eye examinations for people with learning disabilities. This sort of scheme fits with the Directed Enhanced Service, a national scheme that rewards GPs for offering annual health checks to their patients who have a learning disability and are known to the local Learning Disability Team.

Detecting eye problems at an early stage has enormous benefits for the person, and can make it easier for carers to support them in an effective manner. An eye test can determine whether someone needs spectacles for certain tasks or should be referred on for more specialist care from an ophthalmologist at an eye hospital. Carers can take simple and straightforward actions once they understand how well someone sees. Simply putting something close may help some people see better, or remembering to make things bigger, bolder and brighter can help too. Using colour contrast, such as putting milk in a dark cup or using light crockery on a dark table can make eating easier and allow a person to be more independent. Some people may benefit from being approached on the side with better sight, and will prefer to be seated in a group so that they can see what is going on.

Beyond these day-to-day adaptations and benefits to the person, addressing sight problems has benefits across services. People who are empowered to use their abilities to the full will need less social and medical care over their lifetime. And where enhanced eye services are in operation commissioners report benefits from the increased cooperation between health, social care and learning disability professionals and organisations which enables people with learning disabilities to get the seamless care they need.

If you are interested in finding out more, SeeAbility holds a range of training events. In March the charity is running a conference, Valuing Our Vision, about the eye care and visual impairment needs of people with learning disabilities. The event kicks off with a keynote presentation from Scott Watkin, Co National Director for People with Learning Disabilities and Sue Carmichael, Lead for Health and People with Complex Needs, Department of Health. The day is aimed at anyone working with people with learning disabilities and will allow you to access expertise from low vision experts, optometrists, orthoptists and ophthalmologists. Alongside presentations there are practical workshops to allow you to develop the skills that will help you help the people you work with and meet their eye care needs.

Find out more and book a place on the Valuing Our Vision Conference, Leeds, 24th March 2011

Case study

Lucy, 58, has mild learning difficulties and lives in a supported living home. She was referred to eye 2 eye Community Development Officer Stephen Kill by her care manager. Lucy attends an eye clinic for treatment for glaucoma, has cataracts and is also diabetic. The care manager felt that staff needed to know more about Lucy’s eye conditions, her level of vision and what support she needs every day.

Stephen says, “Like the staff, Lucy knew bits and pieces about her eye conditions, but no-one had a full picture. It is a common situation as people may be accompanied to appointments by different support workers at different times”. Stephen went with Lucy to a hospital eye clinic appointment. At the appointment, the doctor explained about Lucy's eye conditions and Stephen helped Lucy understand. Lucy now says, “I know I have glaucoma and cataracts”. Glaucoma is a generally painless condition where raised pressure in the eye can cause loss of peripheral vision. Stephen explains, “Many people with glaucoma don’t know why they keep on returning to see an eye specialist, and are unsure what their eye drops are for. I help them understand what their condition is and what the treatment does, and this is how I helped Lucy.” Lucy is now clear about using her eye drops, and says, “It is one drop four times a day in both eyes”. This is particularly important as, without the drops, Lucy could lose more sight. Lucy and her supporters now understand that repeat appointments allow the doctor to ensure Lucy’s drops are still controlling her glaucoma and protecting her remaining vision.

Stephen carried out a functional visual assessment to find the practical implications of Lucy’s eye conditions. Because Lucy’s peripheral vision is poor, he advised that she needed more support crossing the road. Staff could encourage her to turn her head to look both ways before crossing. Finally Stephen advised staff about how to give Lucy information and make the most of her vision. In her home you can see attractive large print charts listing which carers are helping her each day, suggesting healthy foods for her to eat and noting family birthdays to remember.