“24 hours changed my life – Forever.”

One of these projects involved creating a charity film, which we later called “24 hours changed my life – Forever” that clearly depicted the urgency of medical intervention for patients with suspected cauda equina syndrome.

Working with Neal and Sophie from North Film based in Lytham in Lancashire, I developed a story loosely based on my own experience of developing cauda equina syndrome. Neal and Sophie asked Shari Fox if she would play the part and we created our first charity film.

Later that year we entered the film into several film festivals and were delighted with its success!

• Shortlisted – London Shirts Film Festival July 2021
• Nominee – Film Freeway Pinewood Studios Festival Aug 2021
• Silver Award – People’s Choice under £5 million turnover, Charity Film Awards 2021

We had so much amazing feedback from sharing our film and now we often use it in training healthcare professionals about the impact of cauda equina syndrome.

Why Teaching the Cauda Equina in A-Level Human Biology Could Save Lives

Every year, thousands of people experience severe back pain. For most, it resolves with time, rest, or treatment. But for a small number, that pain is the warning sign of a rare and devastating neurological emergency Cauda Equina Syndrome (CES).

One in 100 low back pain admissions to A& E will become a CES diagnosis.

The tragedy is that many people who develop CES have never heard of it until it is too late.
As the founder of Cauda Equina Champions Charity, and as someone living with the life-changing consequences of Cauda Equina Syndrome myself, I strongly believe that introducing the function of the cauda equina into A-Level Human Biology would be a powerful step toward improving awareness, diagnosis and outcomes.

Awards and Recognition

Over the past decade, I have been incredibly proud to see the work of the Cauda Equina Champions Charity recognised through a number of awards.

These awards reflect a journey that began after I developed Cauda Equina Syndrome, a life-changing spinal emergency that many people have never heard of until it is too late. That experience led me to raise awareness, support others affected by the condition and work to improve understanding among both the public and healthcare professionals.

While some of these awards have been presented to me personally, they truly represent the work of many people. I have worked with patients, volunteers, clinicians, legal professionals, educators and supporters who have all played a part in helping us raise awareness, share lived experience and push for change.

I am incredibly proud of what we have achieved together, and every award reflects that shared commitment.

CESCOS Study Team

I was invited by Dr Nish Srikandarajah, along with our now charity trustee Steven Smith, to be a patient representative for his CESCOS study. The study aimed to develop a qualitative set of outcomes in cauda equina syndrome patients.

The Cauda Equina Syndrome Association agreed and sent out the Delph survey to its membership on behalf of Dr Srikandarajah and we helped recruit participants to the study from our membership. My role included advocating for patients and I worked hard to keep them engaged and involved.

The CESCOS research would later inform the NHS professionals making decisions affecting services for cauda equina syndrome patients about the holistic issues that we, as patients face after surgery and discharge, paving the way for better local and national pathways.

National Suspected Cauda Equina Syndrome Best MSK Working Collaborative

Through my role at Champions Charity, I was invited to join the working collaborative of 60 healthcare professionals and patient representatives as part of a working group looking at the creation of a new National pathway for suspected CES. The group was led by Mike Hutton, Consultant Spinal surgeon and National lead for spinal services optimisation and recovery for the BEST MSK collaborative.

The scale of Mikes task to deliver a new national pathway cannot be underestimated. To bring 60 opinions from several professions within the medical community together with lived experience was no mean feat.

I am proud to say that I worked as part of this group and strongly believe that the uptake of the pathway nationally will improve outcomes for CES patients of the future. It should go a long way to reassure those already living with permanent disabilities through delays in diagnosis and surgery and those left to navigate services without a pathway at the time they were injured, that the future will be better for others that follow.