By Claire Thornber, Founder of I Have Cauda Equina and Champions Charity
When I was first diagnosed with Cauda Equina Syndrome (CES), I felt like I’d fallen through the cracks. I wasn’t alone. Hundreds of others told us the same story — misdiagnosis, delays, and a sense of being forgotten once discharged from hospital. We knew things had to change, and at Champions Charity, we began asking how we could bridge the dangerous gaps in care and communication.
That’s what led to the Beyond Diagnosis report — a comprehensive study of 379 people living with chronic CES. The findings were heartbreaking, but also galvanizing:
· Delayed diagnoses were common, often resulting in irreversible damage.
· Fewer than 5% of patients left hospital with any useful information about managing their condition.
· 69% felt misunderstood by healthcare professionals.
Out of this report came a clear message: patients need tools that empower them to take control of their condition, and clinicians need help understanding it.
So we created the CaudaEquina App — not just a digital resource, but a lifeline.
What the CaudaEquina App Does
The app was built to be a central hub for support, education, and communication. It helps people living with CES manage their symptoms, understand their condition, and communicate effectively with health professionals. And importantly, it integrates with another of our key tools — the CES Healthcare Passport.
Here’s what you’ll find in the app:
· Educational Content Understand how CES affects the nervous system, bladder, bowel, mobility, and mental health — in language that’s clear and accessible.
· Symptom and Medication Tracker Log daily experiences, track your pain, record medications, and prepare for appointments with clear, documented information.
· Digital Healthcare Passport Store your CES history, surgery details, medication, communication preferences, and care needs — ready to show any clinician, anywhere.
· Mental and Emotional Health Resources Access therapy pathways and support options for the emotional challenges of CES, including psychological and psychosexual health.
· Red Flag Awareness Learn and share the signs that CES may be worsening — knowledge that could help prevent further disability.
· Direct Links to Support Instantly connect to Champions Charity’s helpline, peer support groups, and information on specialist referrals.
Why It Matters for Patients
This app wasn’t built in a boardroom — it was born from real conversations with real people living with CES. Here’s how it’s making a difference:
For people newly experiencing symptoms:
· Faster diagnosis through better-informed professionals
· Fewer delays when red flags are clearly documented and explained
· Empowerment, not dismissal
For people already living with CES:
· A clear, shareable health summary to avoid repeating painful details
· Tools to track symptoms and spot patterns over time
· Emotional and psychological support that recognizes CES isn’t just physical
· A sense of control in a world that often feels unpredictable
More Than an App — A Movement for Change
The CES Healthcare Passport, also now in digital form through the app, is helping ensure that person-centred care becomes the norm, not the exception. It gives patients a voice in hospital and community settings, whether they’re attending appointments or facing an emergency.
Together, these tools support what we’ve always believed: those living with CES are experts in their own lives. They deserve tools that reflect that.
The app is free to download on the Apple App Store and Google Play Store, and it’s updated regularly based on patient feedback and clinical guidance.
Looking Ahead
At Champions Charity, we remain committed to turning lived experience into lasting change. The CaudaEquina App and Healthcare Passport are only the beginning. We’re campaigning for a national CES rehabilitation pathway, so every person — no matter where they live — gets the support they need and deserve.
If you’re living with CES, or supporting someone who is, please explore the app. Tell your clinicians about it. Use the Passport. Share your experiences.
Together, we are building a future where no one with CES is left behind.
— Claire Thornber
