Cauda Equina Champions Charity (CECC) is proud to announce the launch of the CaudaEquina App, a pioneering digital platform designed to support individuals living with Cauda Equina Syndrome (CES).
The app was developed in direct response to insights from the charity’s landmark report “Beyond Diagnosis, Identifying the Gaps,” which surveyed 450 people affected by chronic CES. It addresses urgent needs for education, support, and communication in managing this complex condition
The CaudaEquina App is a central hub for personal health management, trusted information, and seamless interaction with healthcare providers. It reflects Cauda Equina Champions Charity’s ongoing mission to offer holistic, patient-centred support beyond traditional clinical settings.
Claire Thornber, Founder of CECC commented: “When I was first diagnosed with Cauda Equina Syndrome, I felt like I’d fallen through the cracks. I wasn’t alone. Hundreds of others told us the same story of misdiagnosis, delays, and a sense of being forgotten once discharged from the hospital. We knew things had to change, and at CECC, we began asking how we could bridge the dangerous gaps in care and communication.”
The app is designed to:
- Empower CES patients with accessible, reliable information and self-management tools.
- Allow patients to track their recovery, mood, and symptoms in the My Diary section to support disability assessments.
- Bridge critical communication gaps between patients and healthcare professionals.
- Provide consistent, ongoing support outside of hospitals and clinics.
Key Features Include:
- Personal Healthcare Passport Integration: Digitally store, share or print individual healthcare passports to ensure healthcare professionals understand a patient’s history, needs, and preferences.
- Educational Content: Easy-to-understand materials on nervous system function, CES symptoms, bladder and bowel health, pain management, and lifestyle advice—accessible for all, including those with learning difficulties.
- Symptom and Medication Tracking with My Diary: Log symptoms, pain levels, medications, and appointments to monitor progress and prepare for medical reviews.
- Healthcare Training: The app brings the two communities of patients and HCPs together by offering healthcare training for professionals to better understand CES
- Mental Health and Psychosocial Resources: Access therapy pathways and support options, including psychological and psychosexual care.
- Red Flag Awareness: Critical information for patients and professionals to recognise CES red flags and prevent delays in diagnosis and care.
- Support and Contact Tools: Direct links to Champions Charity’s helpline, peer support groups, events, and specialist referrals.
Availability
The CaudaEquina App is available for free on both the Apple App Store and Google Play Store. Designed with user-friendliness in mind, it will be regularly updated with new resources and features.
Driving Impact
The app is already being recognised as a transformative tool in the CES community:
- Fostering self-management and better-informed healthcare decisions
- Offering a much-needed lifeline for individuals who often feel underserved or overlooked
- Reinforcing Cauda Equina Champions Charity’s commitment to a holistic, compassionate approach to care
“We created this app to give people with CES the support they deserve—support that listens, informs, and empowers,” said Claire Thornber, Charity Founder “This isn’t just an app. It’s a step toward better lives for those living with CES.”