This is a tribute to Sally Rose. Sally sadly passed away in April 2020 during the COVID-19 pandemic. But Sally leaves a legacy of helping people with learning disabilities access eye care, and through her work helped pioneer an early pathway in Barking and Dagenham. Here mum Maureen, and local optometrist Jig Joshi, tell her story and the impact of the project.

Maureen begins:

“Sally had sight problems as a child; she needed glasses for short sight but was reluctant to wear them. There were no other sight problems noted at the time. When Sally was age 26/27 years old, she kept rubbing her eyes, I took her to the doctors and the GP prescribed drops for hay fever. The symptoms did not go away and I took her back to the GP. Sally described an “itch” on her head, which was her way of saying she had a headache, but there was no mention of eye problems at this stage.

The family started to notice problems when Sally said “I can’t see the TV” but as Sally could turn the TV on and off and put discs into the DVD player, we didn’t think it was anything seriously wrong with her eyes.

It was only that Christmas that, when Sally’s brother gave her a sweet, we noticed she missed it. I then became seriously worried something had gone wrong with her vision. We eventually found a domiciliary optometrist who came to our house, and they identified extremely high pressures in her eyes. Hospital visits ensued to diagnose glaucoma, and despite aftercare from treatment, which did bring down her high eye pressures, Sally lost almost all of her vision, only being able to see light and dark.

If I knew then what I know now about the sight problems that are so common in people with learning disabilities, I might have got help for Sally sooner. When your child has severe learning disabilities, you are so busy thinking of everything you need to do, and constant fight to get support, that thinking about eye sight can get overlooked. Even knowing where to go and who will be experienced enough to see your child can be daunting. 

This experience made me so determined, with Sally, to do something about it so there would be greater awareness and better access to regular sight tests. We talked about what had happened at Vision Strategy meetings and with our local day centre, and Barking and Dagenham commissioners agreed to enhance the optometry offer to people with learning disabilities and start our ‘Bridge to Vision’ project."

Optometrist Jig continues:

“Sally & Maureen Rose were vital to the inception of our local service and through this Learning Disabilities Enhanced Optometry Service (Bridge to Vision), we managed to identify adults with vision problems and help them in various different ways to improve, maximise or maintain their eye health and vision. Often it was about making sure people got the specialist eye care they needed from their optometrist and the correct treatment such as glasses, along with support to wear them. It really helped for people to have familiarity and consistency of who they see for their eye care, and to feel comfortable in their surroundings.

From my perspective, having links with the appropriate medical and low vision services when needed has also been very helpful in ensuring appropriate care could be accessed when glasses may not have been the only solution.

Also, having the opportunity to report back to parents or carers on the outcome of the eye examinations would often prove invaluable for those struggling to do their best to ensure the best life possible for the adults in their care. I found this one of the most satisfying aspects of the service.

This project has not only had positive effects on the quality of life, wellbeing and independence of many of the individuals we have seen, but also a positive impact for the people surrounding and supporting them.

For myself and my colleagues, knowing that we can make a significant difference has meant that participating in this type of work has been ever so rewarding. We must learn from Sally’s case, the sooner we can help people with learning disabilities to be seen the better. Also, as things often change with time we need to continue the regular care that could make all the difference.”

Maureen told us:

I am so proud of Sally and the way she adapted to her sight loss and what we achieved with the project. And now she is not with us any more, to know that sharing her story could mean many more of these pathways across the country makes me even prouder. Everyone with a learning disability deserves an equal right to sight.

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To Sally Rose, pictured here (left) with mum Maureen