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
