“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.

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.