"A worldwide movement"
Claire Thornber
The Cauda Equina Syndrome Initiative is a worldwide movement founded and led by Claire Thornber to raise awareness, improve diagnosis, and provide support and advocacy for people affected by Cauda Equina Syndrome (CES).
Born from Claire’s personal experience of living with CES since 2010, the initiative brings together patients, healthcare professionals, researchers, and advocates from around the world to work toward one shared goal: ensuring no one faces CES alone or undiagnosed.
Through education, outreach, and international collaboration, CES Initiative aims to:
- Promote early recognition and timely treatment of CES
- Share patient voices and lived experiences globally
- Support the development of best-practice clinical standards
- Connect and empower a global CES community
- Influence policy and healthcare delivery through advocacy
The initiative also works closely with the Cauda Equina Champions Charity, the UK’s leading only dedicated CES charity, which Claire founded and continues to support as a trustee.
With a growing international presence, the CES Initiative is creating a unified voice for change—transforming how CES is understood, diagnosed, and supported worldwide.
Why the CES Initiative Matters
Changing Lives Through Awareness, Action, and Advocacy
Cauda Equina Syndrome (CES) is a rare but serious spinal condition that can cause permanent, life-altering damage if not diagnosed and treated quickly. Despite its urgency, CES is often misdiagnosed, misunderstood, or overlooked—leaving patients with long-term disability, chronic pain, incontinence, and emotional trauma.
This is where the CES Initiative steps in—and why its work is not just important, but essential.
A Global Health Gap
Across the world, patients with CES frequently face delayed diagnosis due to inconsistent knowledge of CES symptoms and unclear referral pathways. Many healthcare professionals are still unaware of the critical “red flag” indicators. The result is often devastating—and entirely preventable.
The CES Initiative exists to close that gap. It is a global movement that invites individuals, professionals, and organisations from every country to take part in a shared mission to improve awareness, education, support, and standards of care for CES.
Led by Experience, Driven by Purpose
Claire Thornber, founder of CES Initiative, turned her own diagnosis and life-changing experience with CES in 2010 into a personal mission. She saw the consequences of delayed care first hand—and witnessed how little support existed for others in her situation. That experience sparked the launch of the Cauda Equina Champions Charity, where she continues to serve as a founder and trustee.
What makes CES Initiative unique is that it is:
- Independent and free from commercial or political conflict
- Rooted in lived experience, not institutional agendas
- Focused solely on improving outcomes for CES patients globally
It’s not influenced by healthcare politics or commercial gain. It is powered by people—patients, professionals, and allies—working together across borders, systems, and roles.
And it’s open to everyone.
Why This Work Matters
This affects not just treatment, but how people live their lives. CES is a surgical emergency. Delays in diagnosis can lead to irreversible damage. Raising awareness preserves quality of life.