Meet Claire Thornber, Founder of Cauda Equina Champions Charity, a former CES patient (2010), and a leading patient advocate for cauda equina syndrome (CES) patients everywhere.
We have been supporting Claire and her charity for a number of years, and wanted to share more of her story as to why she felt the need to begin the Cauda Equina Champions Charity:
Looking back, I realise how invisible Cauda Equina Syndrome (CES) patients once were. CES is a rare but lifechanging spinal emergency needing urgent treatment, yet for years many of us were left in the shadows, incontinent, isolated, and dismissed.
After my emergency surgery in 2010, I knew change was needed. I started a small support group that grew into Cauda Equina Champions Charity in 2020 – the UK’s only dedicated CES charity, now supporting over 6000 members worldwide. From the outset our mission was clear – To raise awareness of CES redflag symptoms, campaign for better pathways of care, and provide peer support.
Among our strongest allies was Mr Munawar Mecci, Consultant in Spinal Cord Injuries at the Golden Jubilee Spinal Injuries Centre. As a trustee, he recorded a presentation for CES Awareness Day in which he shared how he came to understand the neglect faced by CES patients. Years earlier he had learned of the Department of Health’s 2012 recommendation that CES patients be treated in specialist spinal centres. Yet even he had been unaware of it at the time. Reviewing his own records, he found that of dozens of patients operated on, only a few received proper specialist care.
In his talk, Mr Mecci described the people he supported: incontinent, ashamed, withdrawing from society, having lost jobs and relationships. He called them a “lost tribe.”
Those words resonated deeply with me. I recognised myself and others in our community. Inspired, I began collecting patient testimonies – stories of survival, fear, resilience, and rebuilding. This became the 2022 book The Lost Tribe – Stories from Survivors of Cauda Equina Syndrome.
The book gave voice to experiences too often unheard. Some accounts described delayed diagnoses and devastating outcomes; others shared how people adapted and rebuilt. In my own chapter, I described the terrifying night in 2010 when my life changed forever, and the daily pain that followed – “like jumping from a helicopter and landing on a telegraph pole with a pineapple strapped to the top.”
The book’s impact has been powerful. It has educated healthcare professionals, comforted patients who felt alone, and raised vital funds. Over 1000 copies have been sold, with many donated to the NHS for training.
Its success laid the foundation for something bigger, putting information and support directly into patients’ hands. When trustee Firas Sarhan joined our board with expertise in digital apps and education, we surveyed patients to assess the need for an app. The response was clear. Patients wanted it. From this, the CaudaEquina App was created, providing empowering knowledge, guidance, and support at patients’ fingertips.
For me, both the charity and the book embody the same truth. By combining patient voices with clinical expertise, we can change lives. What began with my own story has grown into a movement. The once “lost tribe” is now a community with a voice, driving awareness and change.
If you would like to request a free copy of The Lost Tribe, please email info@championscharity.org.uk
Award-winning CaudaEquina App
We were over the moon when our CaudaEquina App received the Bladder & Bowel UK Product Innovation 2025. Our goal has always been to provide people living with Cauda Equina Syndrome (CES) with the tools, knowledge, and support they need to feel empowered in their health journey. Our recently launched CaudaEquina App is a perfect example of this mission in action, and our latest data shows just how much of an impact it is already having. We have over 1,000 downloads to date and are now available in over 200 languages via the new Translator feature.In the past month alone, we’ve seen:
- A 19.75% increase in downloads, reflecting an increasing need for digital support.
- 348 active users in the last 30 days, up 12.26% from the month before.
- 142 new users joining in the same period, showing consistent fresh interest.
- New translator feature, means vital information is available in over 200 languages
These numbers show people turning to the app for guidance, reassurance, and community.
What Members Find Most Useful
Users are not only downloading the app but actively engaging with its features. The most popular sections highlight what matters most to our community:
- My Diary – over 400 views per month, it’s proving invaluable for people who want to track, record, and reflect on their health journey.
- Managing My CES – one of the top-performing sections, showing the demand for clear, practical advice to support day-to-day life.
- Therapies and Healthcare Training – used regularly, reflecting a strong interest in rehabilitation and clinical knowledge.
- Welcome – consistently popular, demonstrating that new users can quickly find their way and feel supported from the start.
Popular Articles and Features
Alongside tools, the app is also becoming a trusted source of information. The most-read articles and resources this month include:
- Bladder Symptoms…and the Danger of Making Assumptions! by guest writer Myra Robson
- The Psychological Needs of People with CES
- My CES Healthcare Passport
- Translator Feature
- Updated Wellbeing Diary
Over time, enduring favourites such as the PIP Daily Living Evidence Tool, My CES Surgery, and Got to Go Card have remained essential go-to resources.
The CES Healthcare Passport
One of the most innovative and important features of the app is the CES Healthcare Passport. This is a digital electronic form that can be downloaded directly from the app and uploaded to NHS medical records. By doing so, it facilitates better rehabilitation planning and faster referrals to further care.
The passport was created as a direct response to our “Identifying the Gaps” survey, which highlighted how often people with CES felt unseen or unsupported in the healthcare system. By providing a secure, portable document, we are helping patients avoid the exhausting task of repeating their story at every appointment, while ensuring clinicians have the vital information they need at their fingertips. Read more about the survey here.
Beyond the App
While the success of the app is something we’re incredibly proud of, it is only one part of a much wider picture. At CECC we continue to provide a full range of holistic services to support people living with CES, not least funded psychological therapy and access to Residential CES Workshops held across the country.
Together, these form an ecosystem of care, with the app acting as a digital bridge that connects people to trusted resources and to each other. The CaudaEquina App is helping us fulfil our mission by ensuring nobody faces CES alone
Download from the App Store or Google Play – https://www.championscharity.org.uk
