Cauda Equina Champions Charity was officially given charity status on January 10th, 2020.
Today’s charity has evolved from The Cauda Equina Syndrome Association, a non-profit founded by Claire Thornber in 2013. CESA had grown from humble beginnings of an online support group Claire set up after her traumatic experience of delayed diagnosis and access to treatment.
Following her own complete cauda equina syndrome injury, Claire struggled to access the services and support she needed for her rehabilitation.
She was discharged from the hospital in retention of urine without catheters, as well as struggling with mobility issues and pain. Seven days later, she suffered a pelvic prolapse. After a phone call to the hospital asking for help, she was left a gift bag of catheters to collect and was then left to fend for herself.
Determined to take control of her own rehabilitation, Claire fought for the follow up appointments and services she needed from the NHS.
After joining a Facebook group, it became apparent she was not alone. There were many people experiencing the same. Lives were being changed forever and nobody had any advice or seemed to care.
Claire set up a dedicated Facebook support group to share all the information she had learnt and the valuable experiences of other members. Steven Smith – Charity Treasurer, was a founding member and still volunteers his time today to help others with the condition.
From a small group of 60 people, it has now developed to a membership of over 4,000 people across the world. Members support each other, at whichever stage of their CES journey they may be.
Some of Claire’s early work to raise awareness of CES was to create Cauda Equina Syndrome Awareness cards. Working with her Facebook group they collectively detailed the nuances of the onset of the Red Flags of CES. Many members remarked that with the benefit of hindsight, had they been asked about the Red flags in a straightforward and direct way, they would have been able to volunteer important information about their impending CES that may have lead to an earlier diagnosis. There was also a lot of conversation about how to express these symptoms to healthcare professionals and what the groups lived experience had been. There was a common experience among the group, that many of the healthcare professionals they met had never heard of CES.
Claire published her first CES Awareness cards in early 2013 with her first corporate sponsorship secured from SCA Hygiene – manufacturers of Tena.
The cards were available for patients to take into GP’s surgeries, share with medical staff to spread awareness and to help patients express their concerns to doctors if they believed they had cauda equina syndrome.
In 2013 the Cauda Equina Syndrome Association was legally formed and with grant funding and help from JMW Solicitors. CESA now had funds to develop their website, helping them to reach out to more patients.
In November 2013 CESA held their first face to face support group meeting in Chester. It was attended by many CES patients, who for the first time had the opportunity to connect with others who understood exactly what they were going through. Many friendships were formed which remain to this day.
CESA worked hard to raise the profile of cauda equina syndrome in the news and in the NHS. In August 2019 Claire approached Clive Coleman from BBC News to see if he would cover the story of delays in diagnosis in cauda equina syndrome. Clive agreed that it was an important story to tell and the story went out across national BBC news channels. For the first time, the truth about delays and misdiagnosis was in the public domain. Subsequently, the Health and Safety Investigation branch expanded its investigation into cauda equina syndrome following this report and made several recommendations, not least that a new national CES pathway be set up.
Reference: Summary report HSIB Report into Timely detection and treatment of cauda equina syndrome ref 3.1.2 August 2021
As CESA grew in membership and its work, the need for a dedicated patient led charity for cauda equina syndrome patients grew ever stronger and Cauda Equina Champions Charity was born.
The Cauda Equina Syndrome Association now exists as the trading arm of the charity.
Cauda Equina Champions Charity now works alongside medical professionals to help improve pathways, raises awareness, delivers training, and bespoke services to patients enabling them to adjust to life after cauda equina syndrome.
On March 1st 2023 the Best MSK Collaborative published the new national CES pathway. Champions Charity were involved with the working group and contributed to the development the pathway.
“We support the new national CES pathway and hope that our collective experiences as patients with cauda equina syndrome, who have suffered delays and misdiagnosis in accessing scanning and treatment will become something of the past. Much investment is needed, in staff and resources, in training and MRI scanning access but we believe this standardised pathway will improve outcomes for cauda equina patients of the future. We are very proud to have played a small part in this and stand proudly representing the voices of CES patients everywhere.” – Claire Thornber, Charity Founder
Link to pathway Pathway Version 5.0.drawio (8) (gettingitrightfirsttime.co.uk)
Cauda Equina Champions Charity is proud to be a patient led charity, the staff and volunteers have all been touched by cauda equina syndrome and work hard to change outcomes for the future.
Although it has been a long road to get to where we are today, it is just the beginning of our story ……