“In a gentle way, you can shake the world" – Mahatma Gandhi
In September 2010, I underwent emergency surgery for Cauda Equina Syndrome, where delays and misdiagnosis resulted in life-changing injuries, an experience that has shaped my work ever since.
It has taken me many years to come to terms with my new reality. Adapting to a changed body, overcoming denial of my physical limitations, and navigating the darker moments of uncertainty about what my future might hold.
In many ways, I consider myself fortunate. Others live with even greater challenges, and I was able to secure financial compensation for the delays in my treatment, which has helped safeguard my future.
But in truth, I would give all of that back in a heartbeat in exchange for my health.
Every cloud has a silver lining, and mine has been the opportunity to channel my energy into improving outcomes for people affected by Cauda Equina Syndrome.
Through personal experience, I became acutely aware of the lack of support for people affected by Cauda Equina Syndrome. I made a commitment to drive change by working to ensure that delays and misdiagnosis become things of the past.
What began as a small support group grew into the Cauda Equina Champions Charity, a national organisation I founded and remain incredibly proud of. The charity has been at the forefront of CES in the UK, raising awareness, challenging systems, working alongside the NHS, and delivering vital support services to those affected.
Over the years, I have spoken with thousands of people living with CES who, like me, have searched for information, answers and acceptance. Those conversations have shaped my understanding and continue to inform my work.
It has been a long and often frustrating journey, but there are signs of progress. Awareness is growing, clinical pathways are beginning to improve, and back pain is being taken more seriously. There is still much more to be done and that is what drives me.
This is not just part of my work, it is what I do day in, day out. It has given me a unique insight into CES – the system challenges, the personal impact, and the lived experiences, all of which I am committed to sharing, to improve outcomes for others.
“I have worked with Claire for a number of years now on films for Cauda Equina Champions Charity. Claire is so lovely to work with, has great communication and amazing ideas.”
Sophie Heppell
Co-Founder and Creative Director at North Film Studios“Claire was a patient research partner for developing a core outcome set for Cauda Equina Syndrome. This was an international research effort to identify the most important outcomes for patients and healthcare professionals in future research studies led by Dr Srikandarajah at The Walton Centre in Liverpool, UK.”
Nisaharan Srikandarajah FRCS(SN) PhD
Clinical Spine Fellow, Toronto Western Hospital“Claire Thornber is a strong, intelligent woman who sees solutions where others see problems. I have been her colleague in two capacities; the first as her employee and secondly as her partner in a co-production project between two charities.”