Testimonials
I really enjoy meeting and collaborating with likeminded people, many of them are inspirational to me. Some have kindly provided testimonials about my work, for which I am grateful.
“In 2019 I was the BBC’s Legal Correspondent, and I covered a story on Cauda Equina Syndrome (CES) which ran across the BBC News output.”
The pieces drew attention to the little-known spinal injury, the need for intervention and surgery within hours of what can be a seemingly innocuous movement of the spine to avoid serious long-term damage, and the cost to the NHS of failing to pick up the signs of CES in good time.
In researching, setting up filming, locating key participants and understanding the life changing stories and suffering of those with CES, I received invaluable help from Claire Thornber, Founder of The Cauda Equina Syndrome Association CIC. It is not putting it too strongly to say that without Claire’s extraordinary knowledge and support, I simply could not have done the piece.
I remain very grateful to Claire for allowing me to highlight a condition that affects many and to raise awareness of the critical importance of early intervention to avoid extremely serious injury.
Clive Coleman
2019 BBC’s Legal Correspondent“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.”
She is really passionate about her work and it shines through in everything she does.
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.”
She was instrumental in patient recruitment and maintaining patient engagement with the international Delphi process and consensus meeting. She has been working hard for early identification and awareness of CES and to make sure patients who have CES are supported and the condition is highlighted as a priority in healthcare.
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.”
In both roles Claire has treated me with respect, generosity of spirit and candour. She delivers results because she works hard and holds herself to a very high standard. While most people usually focus on their own recovery following CES, Claire got to work to make life better for others.
The results of her vision for a Cauda Equina charity are plain to see. Cauda Equina Champions Charity is thriving due to her dedication and wealth of experience. Her foresight in valuing the voices of others with lived experience has paid off in dividends, with her endeavours reaching international status. I believe this because Claire structured the charity so that the support and information is coming from people who understand what it’s like and not just medical professionals who may know the science but not the reality of life with CES.
As a professional to work with, Claire is a straight shooter. She’s upfront, she’s honest and she operates with a strong sense of justice. Her work with People First KC is yet further evidence of her fight for a more just world. She is a natural talker and I’ve witnessed her talking to top of their field professionals and I’ve also heard her speaking to adults with learning disabilities at People First Keighley and Craven. She treats everyone the same, no matter who they are or where they’re from.
Her candour and sense of humour makes her a great colleague. She isn’t afraid to speak her mind and question the status quo if she feels the need to do so, I have always found it a brave and endearing quality.
In summary, I highly rate Claire Thornber as a professional and as a leader. I have so much gratitude towards her for the mentoring she has kindly given me. Claire is someone who climbs the corporate ladder metaphorically speaking but also supports those lower down on the ladder to keep climbing too and I really admire that. She sees potential where many other people don’t, and she doesn’t wait for opportunities, she creates them. Any professional would be lucky to have her on their team.
Catrina Farnell
Charity Manager at People First Keighley and Craven“Cauda Equina Champions Charity linked up with the University of Oxford in 2020 to provide learning resources and interactive sessions for Year 5 medical students. This is part of the student rotation in Orthopaedics, Rheumatology, Trauma and Emergency Medicine (ORTEM). The medical school promotes Patient and Public Involvement as part of clinical teaching to students.”
“As the Co-director of the ORTEM rotation, I am delighted with the involvement of the Charity. As a theme, Cauda Equina Syndrome has cross over between Emergency Medicine and Orthopaedics. The session pulls knowledge from between these specialties, helping students understand the interplay between different services. The Cauda Equina session is also the only one in the rotation to feature patients telling their own story.
The video presentation recounts the personal stories of 2 patients with cauda equina syndrome in their own words. It goes on to summarize what the condition is and how it is treated. There is also a refresher of the red flags that should alert a doctor to this potential diagnosis, and the time-critical need for early recognition, diagnosis, and treatment to improve outcomes. The video presentation is used as a basis for a subsequent live “Question and Answer” online discussion with one of two patients in the video. The video is also accessible at any time through the University Canvas platform, so students can watch the presentation again prior to sitting their exams.”
Student feedback highlights the importance and need for the Cauda Equina Champions involvement:
“Definitely interactive and it was good to hear that personal experience and be able to get the opinions of someone who had been through the process.”
“The session was really valuable in providing a patient perspective on the hospital experience – having their worries played down by staff, being sent home without a formal diagnosis, and having jargon thrown at them. It also highlighted the symptoms and signs of CES in a very personal way – I don’t think I’ll be forgetting the red flag signs or presenting symptoms after this”
“Very moving stories and a good reminder of the human cost of these issues and how important it is to remain vigilant great session Very helpful session and really glad we were able to hear more about this serious condition. It has definitely changed the way I will approach back pain as a presentation”
“I think that hearing from patients is a really important part of our learning and while we can get this a lot in the clinical environment, not every patient wants to be a spokesperson for a debilitating condition and the hospital isn’t always the right time to have these bigger conversations, especially if they are just receiving the diagnosis then. I found the session helped to contextualise CES and will definitely inform my future practice”