'I couldn’t feel my body from the waist down': Clitheroe charity 'turns UK purple' for rare spinal condition

A Clitheroe-based charity is today attempting to ‘turn the UK purple’ to raise awareness for a rare spinal condition.

The two-day campaign from Cauda Equina Champions is today finishing on Cauda Equina Awareness Day (October 1), which recognises an injury which affects roughly 1 - 3 in 100,000 people.

Cauda equina syndrome stems from injuries to the cauda equina, a bundle of nerves situated in the lower spine. It can cause lower limb paralysis, as well as the loss of bowel, bladder, and sexual function if not treated quickly enough.

It’s been 13 years since Claire Thornber founded the Cauda Equina Champions charity, after she herself was diagnosed in 2010.

She first realised something was seriously wrong when she turned over in bed, and felt a sharp pain as she herniated her disc.

Despite her GP recognising her symptoms as cauda equina syndrome, she said it still took far too long for her to be taken seriously

“I had to advocate for my own rehabilitation, really,” she told the Lancashire Evening Post.

“I think the doctors decided I couldn’t possibly have it. My problem was that I was still able to walk; a lot of people collapse with cauda equina syndrome through the pain, but I was still ambulatory.

“There was a big argument with my GP and an orthopaedic over the phone about whether I could have cauda equina or not, because I had essentially walked into the urgent care centre.”

After several delays in treatment, Claire was taken to surgical decompression to remove the herniated disc, which must be done within 24 hours.

“They try to get you into surgery before you lose all feeling below the vertebral level of your spine where your injury is,” Claire said.

“But before my operation, when I was seen in the morning, I couldn’t feel my body from the waist down. I was completely paralysed.

“It was the weirdest feeling in the world, it comes from your feet and creeps up your body, and everything goes cold - then it’s gone.”

Claire said she was “lucky” that despite her paralysis, her surgery was successful enough to allow her to walk after five days in hospital.

However, she was left doubly incontinent, with constant nerve pain, sexual dysfunction, and “the feeling of a giant telegraph pole rammed up [her] backside”.

Despite leaving hospital confronted with a new set of issues, Claire said she had been taken aback by how little support there was for people with cauda equina syndrome - or even awareness of the condition at all.

During her recovery, she started a Facebook group to build a community of others like her, which has now grown into a charity supporting over 6,500 members across 20 countries.

“Even now, you still hear people being dismissed by professionals, and they go to A&E and get set home, and then end up with a permanent disability because nobody listened,” Claire said.

“People leave hospital, and they’re not even told they’ve got cauda equina syndrome in some cases.

“The group started on Facebook back in 2011, then we went as a non-profit in 2013, and became a charity in 2020, so it’s grown massively over the years.

“We want to raise awareness, and educate doctors and patients so anybody with lower back pain knows the red flags of cauda equina.”

Cauda Equina Champions offers support to those diagnosed with cauda equina syndrome through a helpline service and support groups.

It also offers legal advice for patients, as cauda equina syndrome remains one of the most expensive types of NHS negligence cases for spinal issues.

They have also started working with a new NHS pathway group for patients with the condition - though not all trusts have signed up to it just yet.

“There’s an organisation that we work with in the NHS called GIRFT - the Get It Right First Time pathway,” Claire said.

“They’ve done amazing work to put a pathway in place, but trusts haven’t got the resources [to sign up].

“We want to access services for rehab, but they don’t exist in the NHS for cauda equina syndrome patients, so you can’t get help afterwards with all the issues you’ve got.

“In an ideal world, I would want a proper rehabilitation pathway, and for everybody to get the opportunity to be offered that. And in an ideal world, we would all know what cauda equina syndrome is in the first place.”

As part of their campaign work, Cauda Equina Champions this year started the ‘Light Up Purple’ scheme to bring more awareness to the condition.

More than 60 venues across the country have joined the campaign, reaching millions of people nationwide.

“Purple is the awareness colour for neuropathy, chronic pain, and disability, so it fits with that,” Claire said.

“It’s a way to teach everybody with lower back pain and sciatica about cauda equina syndrome, and to reach all of our members across the country who think they’re the only person with the condition.

“We’re hoping it’s going to get bigger every year, and build on our progress, really.”