I'm worried about symptoms
The red flags, what they actually feel like, and word for word what to say when you get to A&E.
Check the red flagsBy patients. For patients. Standing with you.
We’ve had it too.
Cauda Equina Support & Advocacy UK is run by people who’ve been through CES themselves. Wherever you are with it — worried about symptoms, waiting for surgery, or home and wondering what on earth happens now — there’s someone here who understands.
— Gemma and Daz
Wherever you are with it, start here.
I've been diagnosed
Home after surgery and nobody prepared you for this bit. Bladder, bowel, pain, work, mood — and who to ask.
Life after CESI'm supporting someone
For partners, parents and carers — including what to do with your own worry, which nobody asks about.
Families & carersNICE guideline NG59
Know the red flags
These are the red flag symptoms of Cauda Equina Syndrome as defined by NICE NG59. Even one of them needs urgent A&E assessment. Full guidance & A&E script →
Any of these symptoms? Go straight to A&E.
Do not wait for a GP appointment. Tell triage you are concerned about Cauda Equina Syndrome and ask for an urgent MRI.
Saddle anaesthesia or paraesthesia
Numbness, tingling or altered feeling in the inner thighs, buttocks, perineum or genitals.
Bladder dysfunction
Difficulty starting urination, inability to pass urine, loss of the urge to go, or new leakage.
Bowel dysfunction
New faecal incontinence, loss of sensation when passing stool, or loss of anal tone.
Sexual dysfunction
Sudden loss of genital sensation, erectile dysfunction or inability to ejaculate.
Bilateral sciatica or leg weakness
Severe pain, weakness or altered sensation in both legs — or rapidly progressing in one.
Severe progressive low back pain
Especially when it occurs alongside any of the symptoms above.
This list reflects the clinically recognised CES red flags. Other symptoms (e.g. general back pain alone) are not red flags on their own — but combined with the above, they require urgent assessment.
What to say in A&E
Use these words at triage. They reference NICE guideline NG59, which sets out how CES should be assessed urgently.
I am worried I may have Cauda Equina Syndrome. I have new red flag symptoms — please assess me urgently in line with NICE guideline NG59. My symptoms include: [describe yours, e.g. numbness in the saddle area, loss of bladder or bowel control, bilateral leg pain or weakness, or sexual dysfunction]. I understand I need an urgent MRI of the lumbar spine.
The community
Somewhere to put the day.
Recovery from CES isn’t a straight line and most of it is invisible to everyone around you. So our community is built on one small idea: one percent better every day.
You log one thing you managed — got out of bed, walked to the gate, finally rang the continence nurse — and a handful of people who know exactly what that cost you see it. Bad days go in as well, and nothing counts them.
- Small groups of eight to twelve, not one big forum
- Someone from the charity in every one of them
- Private. Not Facebook. Nothing public, ever.
We’re opening the first group soon. Put your name down and we’ll come to you first.
Put your name downToday · Day 34
What’s your 1% today?
Walked to the end of the road and back.
Your group today
Managed a whole shower standing up.
Rough one today. Still here though.
Watch & listen
The things nobody told us.
Daz and Gemma are recording it as they go — the first week home, the appointments, the bits people don’t say out loud. Easier to watch than to read, and a lot easier to believe.
[ First vlog — to record ]
Vlog
The first week home
Suggested opener — the one everyone searches for.
[ Podcast — in the diary ]
Podcast
Coming soon
We’ll put this live once episode one is recorded.
Would you tell yours?
Every story we put up means one more person realises they’re not the only one it happened to. It doesn’t have to be on camera.
Share your storyHow 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 hubSoon
Future 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 events Launching July 2026
Our first Community Support Hub — Liverpool.
In-person community for everyone affected by CES — patients, partners, parents and carers. A safe, welcoming space where nobody has to face their journey alone.
Register your interestLiverpool
July 2026
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:
Coming soon
Patient guides
Plain-English booklets explaining diagnosis, surgery and recovery.
Coming soon
GP surgery posters
Waiting-room posters that help patients spot the red flags.
Coming soon
NHS resources
Materials co-developed with NHS clinicians and patient groups.
Coming soon
University training
Teaching packs for medical, nursing and physio students.
Coming soon
Awareness packs
Run your own local awareness day with our printable kit.
Coming soon
Hospital A&E posters
Triage-friendly visual aids for emergency departments.
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.
£10
Awareness leaflets for a GP surgery
£25
Print life-saving posters for hospitals
£50
Support a peer-mentoring session
£100
Fund a community workshop
£
DonateSecure donations handled by GoFundMe. Opens in a new tab.
Nobody here is a professional talking at you. We’re people who’ve had Cauda Equina Syndrome, building the thing we needed and couldn’t find. If you want to talk to a person, you can.
07395 767 025Registered charity no. 1219532 · In a medical emergency, always call 999 or go to your nearest A&E.
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.