About our organisation

Governance & transparency

Cauda Equina Support & Advocacy UK is a patient-led community organisation founded by people who have lived through Cauda Equina Syndrome and want better outcomes for those who follow.

Current status

We currently operate as a not-for-profit community group. We are actively working towards formal registration with the Charity Commission for England and Wales. Until that registration is complete, all donations are used directly to fund awareness, education, and peer-support activities — and we publish a simple statement of income and expenditure annually.

How decisions are made

Our small team meets regularly to set priorities. Major decisions — spending, partnerships, public statements — are agreed jointly. We consult our community through surveys, our peer-support groups, and informal conversation.

Clinical advice

Our content is reviewed against current NHS, NICE (NG59) and BASS guidance. We are in the process of forming a small clinical advisory panel of CES-experienced spinal surgeons, neurosurgeons, and specialist nurses. We are not a clinical service and never replace medical advice — in an emergency, always call 999 or go to A&E.

Get in touch

For governance, partnership or media enquiries, please contact us at cessupport@caudaequinasupport.org.uk.