Cauda Equina Champions Charity has been working alongside People First Keighley and Craven to produce an Easy Read Cauda Equina Syndrome booklet so that people living with learning disabilities can more easily understand what CES is and the signs and symptoms to be aware of.
In January 2023 Professor Mark Britnell, a former Director General in the NHS wrote and article in The Times following about his firsthand experience of CES delays after his sister who lives with learning disabilities attended A and E with red flag symptoms. She was offered very little information or support. This article inspired Claire Thornber, Founder of Cauda Equina Champions Charity to urgently address this when she recognised this as another loophole for CES patients in current healthcare provision that Cauda Equina Champions Charity could address.
Cauda Equina Champions Charity together with People First Keighley and Craven, created a Focus group to work on the charities current patient booklet and develop an Easy Read version that made important red flags accessible to people with learning disabilities so that they can learn about the Red flags of cauda equina syndrome.
“We know a lot of people with Downs syndrome are affected by hypermobility, which puts them at increased risk of a disc herniation in the lower back.
It is important that everyone is aware of the Red flags of cauda equina syndrome, and we were surprised by the lack of information and resources available to the learning disability community. We are heartened that Cauda Equina Champions Charity are leading the way in providing adequate understandable easy read information on this topic. We know that in the Down syndrome community people are disproportionately affected by hypermobility, and this makes the knowledge of the Red flag symptoms all the more important.
We enjoyed working in partnership with Cauda Equina Champions over a series of weekly meetings where our members were able to offer their valuable contributions in making the information as accessible as possible to everyone. Following the Focus groups our members are now passionate CES ambassadors teaching loved ones and their wider community what to look out for.”
Catrina Farnell, People First Keighley and Craven Charity Manager and Cauda Equina Champions Ambassador
“Working with the Focus group of dedicated members of Peoples First was inspiring. We were struck by everyone’s passion and energy in helping us with this important project. We are very grateful to the whole team at People First and are proud to know that our joint work will ensure there is information to support everyone who finds themselves dealing with an evolving cauda equina syndrome in future.”
Claire Thornber Founder Cauda Equina Champions Charity