About us
By patients. For patients. Standing with you.
Cauda Equina Support & Advocacy UK was founded by patients, for patients — born from lived experience, and a determination that nobody should have to navigate this condition alone.
Our story
Our charity was created from lived experience, a deep understanding of the challenges faced by people affected by Cauda Equina Syndrome (CES), and a determination to ensure that nobody has to navigate this life-changing condition alone.
For many people, a CES diagnosis is overwhelming. The physical, emotional, and practical impacts touch every part of life — from mobility and independence to employment, relationships, mental wellbeing, and financial security. Yet patients repeatedly tell us they feel isolated, unheard, and unsure where to turn.
We knew that had to change.
Why we were founded
Cauda Equina Support & Advocacy UK was established to provide the support, understanding, information and advocacy that so many people need following a diagnosis of CES.
We recognised a significant gap in support for individuals and families affected by the condition. While medical treatment is vital, recovery and adaptation extend far beyond surgery and hospital appointments.
Our charity exists to ensure people living with CES have access to peer support, reliable information, practical guidance, emotional support, and a community that truly understands.
Our charity journey
The journey began with a simple belief: no one should face Cauda Equina Syndrome alone.
From a small peer-support initiative, we’ve grown into a patient-led charity dedicated to supporting, educating, advocating and empowering people affected by CES.
Today, we support people through our online communities, awareness campaigns, educational resources, advocacy work, community support hubs, and partnerships with healthcare professionals and organisations.
Our vision
A world where no one faces CES alone.
We believe everyone living with CES deserves access to understanding, compassionate support, accurate information, timely diagnosis, and high-quality care. Through advocacy, education, awareness and community, we’re working toward a future where the voices of people living with CES are heard, respected and valued.
We envision a stronger, more informed healthcare system where professionals recognise CES promptly, patients are seen without unnecessary delay, and families are equipped with the knowledge and resources to navigate the challenges that follow.
Our values
Eight principles that guide everything we do.
Compassion
We approach every person with kindness, empathy, and understanding. Every CES journey is unique, and we create a safe, supportive environment where people feel heard and valued.
Empowerment
Knowledge is power. By providing information, resources, and support, we help individuals and families make informed decisions, advocate for themselves, and regain confidence.
Community
No one should face Cauda Equina Syndrome alone. We foster meaningful connections between patients, families, carers, and supporters — built on understanding and shared experience.
Advocacy
We make sure the voices of people affected by CES are heard. We advocate for better awareness, timely diagnosis, improved support, and positive change in healthcare and society.
Education
Greater understanding leads to better outcomes. We raise awareness of CES among patients, healthcare professionals, students, employers, and the wider public.
Inclusivity
We welcome and support everyone affected by Cauda Equina Syndrome — regardless of age, background, location, or circumstances. Every voice matters.
Integrity
We act with honesty, transparency, and accountability. We provide reliable information, act in the best interests of our community, and protect the trust placed in us.
Hope
While CES can be life-changing, there is hope beyond diagnosis. We aim to inspire resilience, promote wellbeing, and help people find strength and purpose on the journey forward.
“By patients. For patients. Standing with you.”