College of Optometrists

7 June 2012 Return to news listings

Case study: Sally suffered serious sight loss because she couldn’t tell people about her needs

In National Carers Week (18-24 June 2012) leading eye care charity SeeAbility is raising awareness amongst carers of people with learning disabilities of the need to access eye care. People with a learning disability are 10 times more likely to have serious eye problems than the rest of the population and need regular eye tests just like anybody else.

Sally is 32 years old and lives with her dad, her brother and her mum, Maureen, in Barking, London. Sally has a rare genetic condition called 18P-Syndrome which is linked to issues including small ears, small nose bridge, curvature of the spine and epilepsy. People with 18P- syndrome are thought to be more at risk of developing glaucoma. This condition often develops without obvious symptoms: an eye examination is the only way to detect glaucoma early so action can be taken to prevent unnecessary sight loss.

Around five years ago, Sally started rubbing her eyes. Maureen took her to the doctors and the GP prescribed drops for hay fever.  The symptoms did not go away and Sally described an “itch” on her head - her way of saying she had a headache.  Her head became sensitive to touch: Maureen took her back to the GP who suggested Sally had either a thyroid or scalp problem.  There was no mention of any eye problems at this stage.

The one day, Sally’s brother offered Sally a sweet and as she went to take it she missed.  This was when Maureen first thought that there could be a serious problem. Maureen decided to try and test her theory of a potential sight problem.  She spread the sweets called Skittles over a table and asked Sally to pick them up.  Sally swept her hand over the sweets; she found them by touching them, not by seeing them.

Maureen called an optometry company which did home visits, and made an appointment.  The sight test revealed that Sally had extremely high pressures in both eyes and was losing her sight.  The optometrist recommended that Sally be taken to the accident and emergency department immediately. Maureen took Sally to the local A&E: staff found it difficult to examine her and asked her to return the next day to see a consultant ophthalmologist. At this appointment, Sally was diagnosed with glaucoma and was urgently referred to Moorfields Eye Hospital.

At Moorfields different treatment options were considered.  Laser treatment was unsuccessful and Sally was then booked in for an operation to insert a tube to help drain fluid.  Maureen had to sleep in the same room as her daughter for 3 months after the operation to make sure Sally did not rub her eyes, and administered her eye drops. Eye drops were a crucial treatment for Sally’s glaucoma, before and after the operation.  The surgery was successful in managing the glaucoma and bringing down Sally’s dangerously high eye pressures, but sadly, she had already lost almost all her vision. Sally can now only see light and dark.  Maureen says, “We feel guilty about Sally’s eye condition. We wish we’d noticed it earlier.  We wish we had more awareness of sight problems amongst people with learning disabilities”.

Sally’s day centre organised visual awareness training, which Maureen attended.  Maureen tried on some visual impairment simulation glasses including those that simulate glaucoma.  Maureen found it devastating to realise that her daughter’s vision was so poor. Maureen found support herself through finding out about different organisations and from the sensory impairment team, when Sally was registered as severely sight impaired.

Maureen has since attended a local vision strategy group meeting and raised eye care issues for people with learning disabilities, highlighting her daughter’s story.  She continues to campaign for better eye care for people with learning disabilities in the local area. The local authorities have responded by developing an enhanced optometry service for people with learning disabilities living in Barking and Dagenham. Campaigning for better eye care for people with learning disabilities has become Maureen’s passion and she has worked tirelessly to ensure others do not go through the same difficult times as her daughter.

Although Sally has been through a great ordeal, she has now adapted well through having the support of her family, day centre and health professionals.

SeeAbility’s website has an easy read factsheet about glaucoma along with other key eye conditions. The website also has a searchable database of optometrists and the services they provide for people with learning disabilities. Visit www.lookupinfo.org for further information.

Maureen’s top tips for other carers:

•    Get your own eyes tested, and make sure the people you are caring for have regular sight tests
•    Don’t be worried, talk about your concerns with health professionals
•    Talk to the optometrist before an appointment and check the facilities
•    Remember that people with learning disabilities are 10 times more likely to have sight problems

Maureen’s top tips for health professionals:

•    Listen to what carers say
•    Find out information on eye conditions linked with learning disabilities
•    Sally’s sight loss could have been avoided – remember carers might need awareness training on sight problems

Bill Brittain, Group Manager for Intensive Support of the Barking and Dagenham and Chair Vision Strategy Group added
“In December 2009 the Barking and Dagenham Vision Strategy Group hosted an eye health event.  During a debate session Maureen stood up and told a packed room Sally’s story, highlighting the difficulties Sally had encountered in arriving at a diagnosis for her eye condition.

This was powerful, and shocking.  It also made the professionals amongst us “stand up and take notice” and resulted, the following year in the letting of the Learning Disability Enhanced Optometry Contract”. 

So far, Maureen’s contribution had lead to more than 100 local people taking up the service and the identification of people who need glasses and others who have diabetic retinopathy and glaucoma or other eye conditions.