What began as a small Facebook group has now become the UK’s leading voice on Cauda Equina Syndrome.
The Cauda Equina Champions Charity is an active campaigner to achieve greater recognition of the condition, among medical professionals and the public alike, with a lack of knowledge leading to many people being undiagnosed and suffering in silence.
The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis.
Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition.
And to help increase its offering to people living with all aspects of the condition, the charity has launched its virtual Champions Connect service, building on the work it did in supporting people remotely during the COVID-19 pandemic.
The charity continues to grow from its origins as a Facebook group in both profile and presence, now covering the whole UK from its base in the North West and offering support through rehabilitation opportunities and workshops for people living with the condition and its effects.
“Statistics say there are 1,000 cases of Cauda Equina Syndrome a year, but that is from cases in the acute surgery and spinal units, not everyone will go there, and so not every case will be recorded. We estimate there are probably three times as many people who develop it annually,” says Claire Thornber, founder of Cauda Equina Charity Champions.
“But without any public health campaign or public health messages, it’s still little known – and when 80 per cent of cases could have had a better outcome through earlier diagnosis, it shows the work there is to do.
“What struck me when I had Cauda Equina Syndrome, ten years ago, there was more information out there for dogs with it, than for humans. Thankfully things have since improved, but as a charity we still hear the same stories of delays and misdiagnosis again and again. It’s frustrating.
“Cauda Equina is so much more than back pain, and through having the charity and the support there, it will save other people the journey I had ten years ago. Through enabling people to manage their own pain, we’re helping them to better support themselves.”
And in changing the situation for people with the condition, Claire is ensuring the charity works closely with the healthcare profession.
The team – which is planning its first Cauda Equina awareness week from September 27 to October 1, culminating in an event for medical professionals – works with Spinal Units in hospitals across the country and also helps to train student doctors and nurses in identifying Cauda Equina ‘red flags’.
“It’s great that the medical profession has really taken up the gauntlet, particularly in the last two years. There has been a lot of work with pathways, which is really important,” says Claire.
“But even now, members of our group are going to see their consultant about their pain and are having Functional Neurological Disorder written on their file. That’s not good enough.
“It remains the case that GPs don’t pick it up often enough, as well as A&E admissions. It’s great to see the amount of work physios have done in this area and they’re generally good at recognising the red flags.
“We need to break down the perceptions and stigmas that still persist in society around low back pain, doctors and the medical profession included, and that’s where our work will continue to be focused.”
