The collaboration between Cauda Equina Champions Charity and People First Keighley & Craven was born from a powerful moment of awareness. Claire Thornber, Founder of Cauda Equina Champions Charity, read a Guardian article by a columnist whose close family member, a person with learning disabilities, had been diagnosed with Cauda Equina Syndrome (CES) but had experienced devastating delays to treatment and a lack of appropriate support in hospital.

Knowing the urgent need for accessible CES information, Claire turned to Champions Charity Ambassador Catrina Farnell, now Manager at People First Keighley & Craven, who had previously led the creation of Easy Read NHS materials. Claire proposed a partnership to create a resource specifically for people with learning disabilities, ensuring they too could understand the red-flag symptoms of CES and seek help immediately.

Drawing from the charity’s CLAUDE infographic, a concise, memorable visual tool for CES awareness, the PFKC team applied their specialist expertise in Easy Read communication. Their commitment was exceptional: working meticulously to produce the clearest, most user-friendly version possible, while staying true to the medical urgency of the message.

Cauda Equina patients often face significant health inequalities when trying to access emergency care, with delays in recognition and treatment leading to life-changing consequences. For people with learning disabilities, these inequalities can be even more pronounced. communication barriers, inaccessible information, and a lack of tailored support can all delay urgent intervention. The Easy Read CES leaflet directly addresses this issue by providing clear, accessible guidance on recognising red-flag symptoms and seeking immediate help. By breaking down complex medical information into a format everyone can understand, it makes emergency intervention and treatment more accessible for this patient group, helping to close a dangerous gap in spinal care.

The resulting Easy Read CES leaflet has been adopted by the Musculoskeletal Association of Chartered Physiotherapists (MACP), featured on their national CES resources page, and shared widely across multiple NHS spinal services and physiotherapy networks. This has given the resource national visibility, enabling healthcare professionals and community groups to get life-saving information into the hands of those who need it most nationwide.

This partnership is a shining example of how lived experience, specialist knowledge, and professional collaboration can transform a moment of insight into a lifesaving, inclusive health resource, one that has the power to reduce delays to treatment, improve outcomes, and promote equity in emergency spinal care.