Champions Charity is the leading patient-led organisation in the UK dedicated to supporting people affected by Cauda Equina Syndrome (CES). By combining lived experience with professional collaboration, the charity works to improve awareness, education, and support for people living with the long-term physical and psychological consequences of CES.
Through its growing international community, specialist support services, and innovative patient-led initiatives, Champions Charity is helping to shape better understanding and care for people affected by this life-changing condition.
Founded in January 2020, the Cauda Equina Champions Charity was established to address the lack of dedicated support and awareness for people living with Cauda Equina Syndrome. Today the charity supports a growing global community of over 9,000 members across more than 20 countries, providing information, guidance, and connection for individuals navigating the complex challenges of life after CES. Through its work, Champions Charity seeks to ensure that people affected by CES receive the recognition, understanding, and support they deserve
Impact in Numbers
· 9,000+ community members worldwide
· Members across 20+ countries
· 1,000+ enquiries supported each year
· 197 specialist therapy sessions delivered in 2025
· 54 individuals supported through the therapy service
· 1,500+ downloads of the CES App
· 8,000–10,500 monthly app interactions
· 160 people supported through CES community workshops
Psychological Therapy and Specialist Support
Living with Cauda Equina Syndrome can have a profound psychological impact. Many people experience sudden disability, chronic pain, loss of independence, and significant changes to their daily lives.
Champions Charity provides a specialist psychological therapy service designed specifically for people affected by CES including psychosexual therapy.
During 2025, the charity delivered 197 therapy sessions, supporting 54 clients through tailored psychological support.
Demand for these services continues to grow, and the charity is expanding its team of therapists and counsellors to ensure more people living with CES can access specialist support.
Improving Healthcare Through Education
Improving understanding of Cauda Equina Syndrome within healthcare is a key priority for Champions Charity.
To mark CES Awareness Day 2025, the charity delivered the first taster session of its CPD-accredited training programme at the Royal College of Nursing in London.
The training programme, “The Psychological Impact of Cauda Equina Syndrome,” written by Dr Samar Saleh, supports healthcare professionals in understanding the complex emotional and psychological challenges experienced by people living with CES.
From 2026 onwards, this online CPD-certified training will be delivered nationally and offered free of charge to healthcare professionals, helping to improve awareness, clinical understanding, and patient care.
The CES Healthcare Passport
Champions Charity has developed the CES Healthcare Passport, a practical tool designed to help people living with Cauda Equina Syndrome communicate their needs clearly with healthcare professionals.
The passport enables individuals to record important information about their condition, including:
· bladder and bowel management
· mobility and accessibility needs
· pain and medication
· key clinical considerations
By helping patients explain their condition quickly and clearly, the CES Healthcare Passport supports safer care and better communication between patients and healthcare teams, particularly in emergency or unfamiliar clinical settings.
Patient-Led Innovation
A core principle of Champions Charity is that people with lived experience of Cauda Equina Syndrome should shape the services designed to support them.
Through consultation with its community, the charity continues to develop practical tools, digital resources, and support initiatives that reflect the real needs and challenges faced by people living with CES.
The Cauda Equina App
In 2025, Champions Charity launched the Cauda Equina App, a digital platform designed to provide accessible information and support for people living with the condition.
The app was developed following a survey of over 300 members of the Champions Charity community, ensuring that the resource was shaped directly by the needs and experiences of people living with CES.
The app provides reliable information, practical guidance, and support resources to help individuals better understand and manage life after diagnosis.
Since its launch the app has achieved:
· 1,500+ downloads
· 8,000–10,500 monthly interactions
This innovation was recognised nationally when the app received the Bladder & Bowel UK Product Innovation Award.
Awareness and Professional Engagement
Raising awareness of Cauda Equina Syndrome remains central to the charity’s work.
In 2025 Champions Charity:
· Collaborated with World Spine Day to mark the first International CES Awareness Day on 16 October
· Delivered four CES community workshops in Glasgow, Birmingham, Bristol and Leeds, supporting 160 people affected by CES
· Presented the CES App research poster at the ISCOS international conference in Sweden
· Attended the Guttmann Conference in Middlesbrough
· Attended the MASCIP Conference, engaging with spinal cord injury professionals and rehabilitation specialists
These activities strengthen collaboration with healthcare professionals while raising awareness of CES across both the medical community and the wider public.
Recognition and Awards
The work of Champions Charity has received national recognition through several awards, including:
NR Times Charity of the Year Bladder & Bowel UK Product Innovation Award
These awards reflect the growing recognition of the charity’s work and the importance of improving support and awareness for people affected by Cauda Equina Syndrome.
Looking Ahead
Champions Charity remains committed to expanding its work and improving support for people living with Cauda Equina Syndrome.
Future priorities include:
· Expanding specialist psychological therapy services
· Delivering free CPD training for healthcare professionals
· Growing the international CES support community
· Developing innovative digital tools and resources
· Continuing to raise national and international awareness of Cauda Equina Syndrome
Champions Charity is more than a support organisation. It is part of a growing movement working to ensure that people affected by Cauda Equina Syndrome are seen, understood, and supported throughout their lives.