By patients, for patients.
Awareness saves lives.
We’re a small UK community supporting people affected by Cauda Equina Syndrome — through plain, honest information, advocacy, and standing alongside each other.
Founded by survivors of Cauda Equina Syndrome.
The most important section on this site
Know the red flags
Cauda Equina Syndrome is a medical emergency. Recognising these symptoms early — and acting fast — can mean the difference between recovery and lifelong disability. What is CES?
If you experience any of these symptoms, seek urgent medical attention immediately.
Go straight to A&E — do not wait for a GP appointment. Tell them you are concerned about Cauda Equina Syndrome.
Saddle numbness
Numbness or pins-and-needles in the inner thighs, buttocks, genitals or back passage.
Loss of bladder control
Inability to urinate, leakage, or no longer feeling when the bladder is full.
Loss of bowel control
Inability to control bowels, or no awareness of needing to go.
Severe lower back pain
Sudden, severe back pain — especially with any of the other symptoms here.
Leg weakness
Weakness in one or both legs, difficulty standing, walking or climbing stairs.
Numbness or tingling
Unusual sensations spreading through the legs, feet or saddle area.
Sexual dysfunction
Sudden loss of sensation or function — a critical and often missed warning sign.
Sudden mobility changes
Any rapid change in your ability to move, stand or feel below the waist.
“We built this from lived experience.” — the founders
Our story
Built by people who’ve lived it.
Cauda Equina Syndrome (CES) is a rare but devastating condition caused by compression of the nerves at the base of the spine. Without rapid diagnosis and surgery, it can lead to permanent paralysis, incontinence, and life-changing disability.
We know — because we’ve been there. Our founders are CES survivors whose lives were changed forever by delays that shouldn’t have happened. Hours matter. Awareness matters.
CES is rare — only around three people in every 100,000 are affected each year. That rarity is part of the problem: it means GPs and A&E teams may only see a handful of cases in a career, and the signs get missed.
Cauda Equina Support & Advocacy UK exists to make sure no patient, family or clinician misses the signs. We campaign for earlier diagnosis, support those navigating life after CES, and build a community where nobody has to face this alone.
The critical window for emergency surgery is roughly 48 hours. That’s why awareness — yours, your GP’s, your A&E team’s — is everything.
How we help
Support, every step of the way.
From the moment things go wrong, through diagnosis and recovery, into the long journey that follows — we’re here.
Peer Support
Connect with others who truly understand. One-to-one and group support from fellow CES survivors.
Find a peerFamily Support
CES affects whole families. Resources, listening ears and guidance for partners, parents and carers.
Get helpAdvocacy
We stand with patients navigating NHS pathways, complaints, and the long road to recognition.
Speak to usAwareness Campaigns
Helping the public, GPs and emergency teams recognise the red flags before it's too late.
Get involvedEducational Resources
Patient guides, posters and training materials, written with clinicians and reviewed by survivors.
Browse hubFuture Support Line
We're building a dedicated CES support line. Register your interest and we'll keep you posted.
Coming soonCommunity Events
Meet-ups, walks, awareness days and our annual gala. Real connection, in person and online.
See eventsCommunity
You are not alone.
CES can feel isolating. It doesn’t have to. Real stories from real people, and a community being built — by us, for us.
I thought I was going mad. Finding people who actually understood what I'd been through changed everything.
Nobody warned us how hard the months after surgery would be. This community held us up when nothing else did.
Sharing my story was terrifying. But knowing it might stop one more person being missed — that's why we're here.
Coming soon: a private space, just for our community.
We’re building safe, moderated spaces where members can share, ask, and support each other without judgement.
- Private community forum
- Member accounts & messaging
- Safe, moderated support spaces
Fundraising & events
An evening to change lives.
Each year we gather survivors, families, clinicians and supporters for an evening of stories, hope, and raising vital funds for CES awareness.
Saturday, 14 November 2026
Drinks reception 7:00pm · Dinner & speeches 8:00pm.
Tickets opening soon
Individual seats and small group tables. Register your interest and we’ll be in touch first.
Sponsors & auction
If you’d like to sponsor the evening or donate a lot for the auction, please get in touch.
Donate
Every pound helps someone keep their mobility, dignity and life.
Your donation funds awareness materials, peer support, and advocacy work that gets CES recognised before it’s too late.
Awareness leaflets for a GP surgery
Print life-saving posters for hospitals
Support a peer-mentoring session
Fund a community workshop
Secure donations handled by GoFundMe. Opens in a new tab.
Education hub
Resources for patients, families & clinicians.
We’re building a free library of awareness and training materials — co-created with NHS clinicians and reviewed by survivors. In the meantime, our written guides are live now:
Patient guides
Plain-English booklets explaining diagnosis, surgery and recovery.
GP surgery posters
Waiting-room posters that help patients spot the red flags.
NHS resources
Materials co-developed with NHS clinicians and patient groups.
University training
Teaching packs for medical, nursing and physio students.
Awareness packs
Run your own local awareness day with our printable kit.
Hospital A&E posters
Triage-friendly visual aids for emergency departments.
Get in touch
We’re here. Reach out.
Whether you need support, want to share your story, or are looking to partner with us — we’d love to hear from you.
Stay in the loop
Awareness updates, campaigns and event news. No spam — promise.