A charity is leading efforts to make Cauda Equina Syndrome (CES) red flags and support options more available and accessible to people with learning disabilities.
While awareness of CES is growing, consequences of not receiving early intervention can be life-changing – but still the warning signs are not widely recognised within society and even within healthcare.
And for people with learning challenges, this risk can be exacerbated, as they may not be able to access, read and understand literature and information in the way that wider society can.
To address this, Cauda Equina Champions Charity has produced a booklet, which is in an easy-read, accessible format and explains symptoms, red flags and where to find support. It is also being translated into a number of non-English languages to expand its reach as far as possible.
Initially available online, the booklet is available to print and healthcare providers and NHS Trusts are being urged to share it with patients who could benefit from accessible information.
Developed alongside People First Keighley and Craven, a charity that supports people with learning disabilities, its creation has been welcomed as a means of helping to widen information about CES – consequences of which can include bowel and bladder dysfunction, extreme pain and numbness, and even paralysis.
Claire Thornber, founder of Cauda Equina Champions Charity, said people with learning difficulties are often a forgotten population in healthcare.
“It’s hard enough to get information and support from the NHS anyway about CES, but for people with learning disabilities, it’s really difficult to access and to fully understand,” says Claire, whose charity delivers a broad range of support, including psychological and psychosexual.
“While they might be fortunate enough to be given some information by healthcare professionals, there is no easy read version of the red flags card – so its impact can be lost.
“What we have created is an easy-read leaflet which can be given to patients, and which can give them and their families the information they need in an accessible way.
“We’d urge healthcare professionals to give this to their patients, and to refer them to us via the website if they need support. People with learning difficulties are a really under-represented population when it comes to giving information in an accessible way.
“This really does need to change and we’re really pleased to be bringing it to the forefront.”
The partnership with People First Keighley and Craven on this project was initiated through the relationship between Cauda Equina Champions Charity and People First manager Catrina Farnell, who is an ambassador for the charity, having gone through her own traumatic experience of CES.
It was also inspired by the story of leading healthcare figure Professor Mark Britnell, whose sister – who has learning disabilities – was left unable to walk properly after CES.
“At People First Keighley and Craven, there are 33 people with learning disabilities who work there, and within their network, there are two people who are living with CES – and that’s a really high proportion of people,” says Claire.
“We realised the need to communicate with these people in ways they could understand and that would be meaningful to them. What we have produced together, as a result of feedback from focus groups, is an easy-read document which is also being translated into other languages.
“The feedback has been great, and we really hope that those who need it will be supported by healthcare professionals and family in accessing it.”
“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,” says Catrina.
“We are heartened that Cauda Equina Champions Charity is leading the way in providing adequate understandable easy read information on this topic.
“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, 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.”
