Breaking down the barriers to effective Cauda Equina care: Our partnership with Cauda Equina Champions

Claire Thornber is the incredibly inspiring founder of Cauda Equina Champions, a charity that supports and brings together those struggling with a diagnosis of Cauda Equina Syndrome (CES).  

As a proud partner of Cauda Equina Champions, Fletchers Solicitors were honoured to join Claire on at her most recent CES workshop in Leeds this month, where Michael Gray, a Partner and Spinal Injury Unit Lead at Fletchers, and Carol Bennett, Welfare Benefits Advisor, delivered informative talks to help empower those living with CES. 

Commenting on the day of the workshop, Michael said: “The impact of Cauda Equina Syndrome might not always be visible to the onlooker.  It is a poorly understood and underappreciated condition, which is why Fletchers are pleased to support education and knowledge sharing initiatives wherever those opportunities arise. Bringing people together to talk about the condition, their lived experience and the difficulties that they face day-to-day, helps to break down barriers, give confidence and to educate those who attend.”  

What is Cauda Equina Syndrome?  

Cauda Equina Syndrome is a rare and severe spinal cord condition, in which the nerves in the lower back become severely compressed. Symptoms can include; severe sciatica, sexual dysfunction, issues with incontinence, and weakness or numbness in the legs and groin.  It requires emergency hospital admission, and may in many cases require emergency lumbar decompression surgery. The longer the condition goes untreated, the greater the chance that it can lead to permanent paralysis and incontinence issues. 

For many that receive treatment for Cauda Equina Syndrome, the road to recovery is extremely difficult. Physical ability following surgery can vary from person to person, but for the majority, they are left struggling to fulfil many day-to-day activities due to severe neuropathic pain and discomfort. Understandably, coming to terms with the new life that people are then forced to adapt to, can have a profound impact on their mental health – and it is not unusual for those affected to struggle with depression and feelings of isolation.  

Leveraging lived experience to affect change 

Since her own lifechanging diagnosis with CES in 2010, Claire has utilised her lived experience to drive incredible change. She has helped to build life-saving peer support networks for others suffering with the condition, and has influenced national clinical pathways to get CES firmly on the agenda.  

As well as this, Claire has also worked hard to develop an innovative mobile app, that’s not just an educational tool, but a wellbeing and lifestyle hub for patients that can support their road to recovery. 

Workshops that work 

For the past ten years, the Cauda Equina Champions Charity has hosted impactful and informative workshops that bring people with CES together, and empowers them with knowledge, advice and a new-found community with whom they can share their experiences and learn that they are not alone.  

Speaking of the workshops, Claire says: “At the core of what we do, is the patient. Everything revolves around our community and these events. Yes, they’re educational, but first and foremost it’s about meeting people, building relationships and tackling the isolation that so many people with cauda equina experience.”  

Lee’s story  

In attendance at the Cauda Equina event was new charity-supporter, Lee from Yorkshire.  Lee has been a lorry driver for many years and had previously suffered the odd ache and pain in his back, but never anything serious.  But Lee explains that he woke one morning with extreme back pain:  

“It felt like something had snapped in my back. I couldn’t get down the stairs. I tried to persevere and get myself out to work but it was too painful.”  

Lee managed to get a same day appointment at his GP surgery, but was seen by a locum doctor that he had never seen before. Lee explains: “I told them I could hardly walk and that I felt as though I’d fallen in nettles. They told me I had bad sciatica and advised me to go home and rest, take ibuprofen and try going for some walks.”  

A few days later, still in immense pain and now struggling with severe constipation too, Lee decided to go to A&E.  Whilst he waited to be seen, Lee was in too much pain to sit down, so spent several hours stood up. After consultations with two separate doctors, Lee was once again sent home – both doctors reaffirming that it was just bad sciatica, and he needed to keep taking ibuprofen.  

More days passed and Lee was still off work, exhausted from being in so much pain. The anti-inflammatory medication was not working, and Lee couldn’t sleep due to the ‘buzzing’, sensation in his legs. Getting increasingly worried, he decided to take action, ringing NHS 111 for some advice at 4am. The advisor subsequently told Lee to go back to A&E.  

This time, Lee was finally taken more seriously, and was sent in for an MRI scan, which quickly led on to him needing to have emergency spinal surgery. “The doctor told me I had something called Cauda Equina Syndrome, I’d never heard of it before.”  

Following his surgery, life changed a lot for Lee. “Nobody really told me what to expect afterwards. I couldn’t exercise anymore. I used to be really into the gym – I’d even fitted a brand-new gym at home, and I just couldn’t use it. I was told I couldn’t lift weights anymore. But I find myself struggling to do even basic things like the gardening these days, and it’s frustrating.” 

To his credit, despite the challenges, Lee still works as a lorry driver, working a four-day-off and four-day-on shift pattern, but he tends to spend his days feeling tired and worn out by his pain. “Everything feels like more of an effort. When I’m walking, it feels like I’m always walking uphill.” 

Lee found out about the Cauda Equina Champion workshops through Fletchers Solicitors, and it’s helped him to feel less alone with his struggles.   

“In the six years I have been recovering from Cauda Equina, I have never spoken to anyone else with it.  It’s so rare and unheard of that it’s hard to meet others going through it.  These events are fantastic – just talking to other people that are also going through this, is brilliant.  I felt like I was alone but now I’m part of a whole community. It makes the burden feel lighter.” 

Fletchers Solicitors are proud to support Cauda Equina Champions  

During the workshop that Lee and many other CES patients attended, Carol Bennett, Welfare Benefits Advisor at Medical Law Services, gave the attendees some practical advice on the benefits system. The purpose of Carol’s talk, was to outline how a person suffering with Cauda Equina Syndrome, might successfully apply for benefits to support their wellbeing.  

Carol explains: “Aside from the legal process that Fletchers are such a leading light in, we have support services who can advise clients on what they can expect by way of therapies, review reports and choosing suitable equipment etc. We also have a benefits team internally, who can help with the completion of application forms, and also review someone’s income to make sure they are getting all the support they are eligible for.” 

In addition, Michael Gray, Partner and leader of the Spinal Cord Injury Unit at Fletchers Solicitors, gave attendees an informative talk on how to identify if they were treated negligently during their diagnosis and treatment for CES, and dispensed some helpful information about the investigation process. 

Michael explains: “I hear so many stories about medical professionals failing to appreciate the importance of what should be well recognised “red flag symptoms” of CES, missing vital opportunities to intervene in the progression of this condition. CES is a time-sensitive condition and sometimes there might only be one opportunity to intervene. Missing that chance and dismissing those symptoms as “sciatica” only causes more stress for the patient, leaves them feeling unheard and enduring extreme pain. I hope that by raising awareness of CES, medical professionals are more likely to think about the condition, investigate and diagnose it at an earlier stage. It is my hope that future cases of CES related medical negligence can be avoided by increasing everybody’s awareness.  But for those that believe they have experienced medical negligence during their CES diagnosis, Fletchers Solicitors can help.” 

How can we help?  

Fletchers Solicitors is a specialist personal injury and clinical negligence law firm with a dedicated Spinal Injury Unit. Our lawyers have dedicated their professional careers to supporting those with spinal cord injuries.   

We offer first class legal advice, to help our clients to get the answers that they want and deserve, to understand more about whether the care that was provided was to the standard required, and whether they have come to avoidable harm.  

In addition, Fletchers can provide access to benefits advice, case management and offer signposting to various charities and organisations who can support our clients to live their best life after injury.   

Fletchers Foundation  

Sometimes, there is no claim for clinical negligence, or a person doesn’t want to make a claim for clinical negligence. Fletchers can still support those individuals by referring them on to the Fletchers Foundation – a charity that will consider applications for financial grants, that often help to make meaningful and impactful changes to day-to-day quality of life. 

Find out more about how we can help with making a Cauda Equina claim here