How we help
Practical support, trusted information, and a community that gets it.
A diagnosis of Cauda Equina Syndrome can be overwhelming and isolating. As a patient-led organisation, we’re here to make sure nobody has to face it alone.
Peer support
Living with CES can feel lonely, particularly when friends, family and even healthcare professionals don’t fully understand the daily challenges. Our peer support communities bring together people from all walks of life affected by CES — newly diagnosed, awaiting surgery, recovering, living with long-term symptoms, or caring for someone with the condition.
Our private support groups are a safe, confidential space to:
- Share experiences and personal journeys
- Ask questions and seek advice from those with lived experience
- Discuss symptoms, recovery and daily challenges
- Find emotional support during difficult times
- Celebrate progress and achievements
- Build meaningful friendships and lasting connections
Many members tell us joining our community was the first time they felt truly understood since their diagnosis.
Join our private Facebook communities
Our private Facebook groups connect thousands of people affected by Cauda Equina Syndrome across the UK and beyond. Group links are being rolled out — please contact us for an invite while we finalise the directory.
Advocacy & signposting
Navigating life after a CES diagnosis can be complex — accessing healthcare, understanding your rights, applying for benefits, seeking workplace support, or finding specialist advice, often while coping with the physical and emotional impact of the condition. We help connect people with trusted organisations, professionals and specialist services. We can signpost for:
- NHS healthcare services
- GPs and specialist referrals
- Neurology, neurosurgery, pain management, urology, bowel and rehabilitation
- Mental health and wellbeing support
- Occupational therapy and physiotherapy
- Continence services
- Benefits and financial support
- Employment rights and workplace adjustments
- Housing and accessibility support
- Social care services
- Carer support
- Legal support and specialist solicitors
- Disability and neurological charities
- Education and training support
- Local community services and support groups
Patient advocacy
Many people affected by CES feel unheard, misunderstood or unsure how to communicate their needs. Our approach focuses on empowering individuals with information, confidence and support so they can make informed decisions about their healthcare, employment, finances and wellbeing. We don’t provide legal or medical advice, but we help people understand their options and find specialist services that can.
Trusted organisations & partners
As we grow, we’re building partnerships with a wide range of organisations to ensure our community has access to reliable, up-to-date support:
Healthcare services
- National Health Service (NHS)
- Integrated Care Boards (ICBs)
- Specialist Neuroscience Centres
- Pain Management Services
- Continence Services
- Community Rehabilitation Teams
- Mental Health Services
Benefits & financial support
- Department for Work and Pensions (DWP)
- Jobcentre Plus
- Citizens Advice
- Turn2Us
- MoneyHelper
- Local Welfare Assistance Schemes
Disability & health charities
- Spinal Injuries Association
- Disability Rights UK
- Scope
- Back Up Trust
- Pain Concern
- Bladder & Bowel UK
- Mind
- Rethink Mental Illness
Employment & workplace support
- Access to Work
- ACAS
- Disability Rights UK
- Occupational Health Providers
- Trade Unions
Legal support
- Specialist Medical Negligence Solicitors
- Employment Law Solicitors
- Legal Aid and Advice Services
- Advocacy Organisations
Emotional support
The emotional impact of CES can be one of the hardest parts of the journey. Fear, anxiety, grief, frustration, isolation and uncertainty are all common — whether you’re newly diagnosed, awaiting treatment, recovering, or adjusting to long-term changes. Sometimes what people need most is someone who will listen, understand, and remind them they aren’t alone.
Our trained volunteers — many with lived experience of CES — are available through our Facebook community, WhatsApp support service and dedicated phone lines. A safe, non-judgemental space where you can talk openly and connect with someone who gets it.
Partner with us
If your organisation would like to work with Cauda Equina Support & Advocacy UK to improve outcomes for people living with CES, please get in touch.
Because no one should have to navigate their CES journey alone.