When I was younger I was told I would live in a care home. Now I am married and live independently. I was also told I would never have a job, but I have proved people wrong.
My name is Scott and through my work with the charity SeeAbility, I help people with learning disabilities to get better access to the eye care they desperately need.
This New Year was a really proud moment for me. I am 36, I have a learning disability, and I was awarded a British Empire Medal in the New Year Honours for my work.
Not many people know that you have a really high risk of sight problems when you have a learning disability. 1 in 10 adults will be blind or partially sighted and 6 in 10 will need glasses. The risk of poor vision increases the more severe your learning disability is.
There are over one million people with learning disabilities in this country. In many cases, the sight problems and suffering experienced are totally avoidable.
My sight isn’t great. I have an eye condition called keratoconus which thankfully was picked up early on and treated. If it hadn’t been treated, I would be a lot less independent now. Access to eye care for people with learning disabilities is a complete lottery and I was one of the lucky ones.
SeeAbility really supported me through my eye care journey. Now I work for this committed charity and I will continue to make sure people with learning disabilities have a voice and can make a difference.
People with more severe learning disabilities than me might not be able to speak and say they have a problem with their eyesight. This can make it more difficult for those who support them, such as carers, parents and teachers, to spot there’s a problem with their vision.
There are people like Sally, who lost her sight in her 30s to glaucoma. She couldn’t tell anyone she was gradually going blind. People thought her rubbing her eyes was all down to hay fever until it was diagnosed too late. How scared must Sally have been? Maureen, Sally’s mum, now campaigns for greater awareness and better eye care services.
Many people with learning disabilities need targeting with better access to longer, adjusted appointments for health checks. In England, the NHS will do this for GP check-ups and dental care, but so far they won’t do it for eye care.
Me and my colleagues at SeeAbility have been banging on the door of NHS England for a number of years. They run the national NHS sight testing system. We’ve been telling them that people with learning disabilities need an eye care service they can access.
We want to see new national programmes of eye care in the community, and sight tests offered in special schools where four in five children with severe learning disabilities attend. We also want learning disabilities to be added to the list of factors that allow people to qualify for free NHS sight tests.
At the moment a small number of local areas fill the gaps in a severely underfunded system. There is no national plan to provide sight tests for people with learning disabilities, despite being a high-risk group of people. Because of this, people with more severe learning disabilities often end up using hospital eye clinics for routine sight tests. Hospitals are often not easy to get to and can involve long waits.
This makes me angry. We shouldn’t be treated as if we are second-class citizens.
Improved community sight tests for people with learning disabilities wouldn’t cost an awful lot of money and it would save money in the long run. Poor vision is leaving so many people more dependent than they need to be.
But rather than fix a broken system, NHS England continue to drag their heels. We hear a lot of promises on how important people with learning disabilities are, that we have rights not to be discriminated against, but it seems we just don’t have an equal right to sight. And that has to change, enough is enough!