In the last blog of this series, two parents who have campaigned improved eye care for people with learning disabilities, Baroness Sheila Hollins and Alyson Farrell, speak out on the need to keep eye care in special schools, and share how they are bringing attention to the issue of improving eye care for all people with learning disabilities in parliament. 

Baroness Hollins says:

“My son Nigel has a visual impairment, and a learning disability and autism. Together with SeeAbility we created a visual, word-free resource through the charity I founded - Books Beyond Words. We created a story called Looking After My Eyes and I am pleased to say it has helped Nigel and so many other people prepare for a visit to the opticians.

"But I also recognise there is system change needed and for years I have supported the work of SeeAbility in parliament calling for the targeted improvements of eye care for all people with learning disabilities. 

"It is one area of primary care ripe for reform as so many people with learning disability will have a serious sight problem but not get the eye care they need. They could even end up avoidably blind by never having had a sight test. It is totally within the control of NHS England to do something about this as it oversees the sight testing system. 

"I welcomed the creation of the NHS Special Schools Eye Care Service  because it is a model of service that is evidence based, has been tried and tested and has widespread support from parents, schools and eye care professionals. This is tens of pounds of investment per child, for long term benefits.

"At one point there was a national policy to establish this Service, so I’m dismayed that now children and families face uncertainty over its future. There are so many scandals that emerge time and again in healthcare for people with learning disabilities – this cannot be another. It’s something myself and fellow parliamentarians will be seeking urgent answers on.” 

Alyson continues:

“My daughter Ellie’s story is similar to many children with high support needs. The list of specialists she sees is a long one. Hospital eye clinics were on that list, but the visits caused her huge anxiety. 

"So when SeeAbility first came to her school with their project many years ago now, I was absolutely delighted that her eye tests could take place in school. I just knew as a parent I didn’t have to worry any more. It’s so important that Ellie’s vision is looked after and she has the glasses she needs, she relies so much on her vision for communication and uses eye gaze technology. 

"I have been an ambassador and spokesperson for this model of care to be in all special schools for years now. I was overjoyed that NHS England committed to do this and we all celebrated together at Ellie’s school on World Sight Day back in 2019. It makes me so happy there are now thousands of children benefitting from the same type of care Ellie has.

"But now it looks like the future is uncertain. Ellie has now moved school and so I enquired about the NHS Service and was told that it wasn’t yet available in her new school – and in fact the expected rollout has stopped for an evaluation. She has been referred back into the hospital system.

"I don’t want this photo you see of Ellie having her sight test at school to be one for the history books. 

"I’m back to campaigning and I have set up a petition not just to ensure there is a special schools eye care service nationally, but also improved eye care for all people with learning disabilities. 

"We all know the NHS is in financial difficulty but its clearly a win-win when so many children like Ellie would otherwise be in the more expensive hospital system. But fundamentally it is about a basic human right to equitable eye care that was promised to our children. And that is worth fighting for.”

Please sign Alyson’s petition.

Find out more on how to order a copy of Books Beyond Words ‘Looking After My Eyes’.