“In a gentle way, you can shake the world.”
Mahatma Gandhi
In September 2010 I had emergency surgery for cauda equina syndrome and through delays and misdiagnosis was left with life changing injuries.
It has taken me many years to come to terms with my new self, battling with my new body, overcoming denial of my physical limitations and dealing with the dark days of wondering what, if anything my future would hold. In many ways I count myself lucky, there are others who deal with issues greater than mine everyday and I was fortunate enough to secure financial compensation for delays in my treatment and safeguard my future.
In a heartbeat, I would give all the money back in exchange for good health.
Every cloud has a silver lining they say, and my silver lining has been the opportunity to focus my energy on changing outcomes for CES patients everywhere.
From personal experience, I had become acutely aware of the lack of support for CES patients like me. I have dedicated my life to bringing about change, to ensure delays and misdiagnosis of cauda equina syndrome become things of the past.
I set up a support group, which eventually became Cauda Equina Champions Charity in the UK, of which I am extremely proud. Our charity has been at the forefront of cauda equina syndrome in the UK and internationally. Raising awareness, challenging and confronting the NHS, and delivering much needed support services to people affected by the condition has become my life.
It has been a long, frustrating journey but finally I can see a glimmer of light on the horizon. Medical professionals are taking back pain more seriously, pathways are finally being put in place and awareness of CES is growing. There is still a long way to go and things are far from ideal, but this is what I do, day in day out, week after week, year after year. As such, this gives me a unique insight into CES, the impact and issues, the personal stories and problems surrounding it, that I want to share with the world.
“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.”