Inspiring journey of our friends at CESCI in supporting Cauda Equina Syndrome patients
In our continued partnership with the Cauda Equina Spinal Cord Injury (CESCI) group, we have been privileged to witness and support the incredible work they do for individuals affected by Cauda Equina Syndrome (CES). In this blog, we will delve into the recent developments and achievements of CESCI, highlighting their unwavering dedication to advocating for CES patients and addressing their diverse needs, including essential aspects like bowel and bladder management.
Before we dive into these exciting updates, let’s briefly recap what CES is and introduce you to the inspiring minds behind CESCI. You can find a more detailed explanation in my previous blog but in brief, CES is a rare but very serious condition that affects the lower section of our spinal cord resulting in wide-ranging symptoms including severe low back pain, bladder and bowel dysfunction as well as motor and sensory changes from the waist down. Prompt diagnosis and treatment are critical to prevent long-term disability.
The CESCI group, founded by Allison and Nigel Whitehorn, is a beacon of support for those living with CES. Their profound empathy and lived experience make them invaluable resources for this community.
At Bolt Burdon Kemp, we are excited about all the recent developments and initiatives that Allison and Nigel are taking on as part of their mission to support others with CES. We are so privileged to be able to celebrate these accomplishments with them and these include the following:
- Peer Support at Barts
Allison’s expertise and dedication have led to her being invited to offer much needed peer support to newly diagnosed CES patients at Barts Hospital in London! We have heard so many amazing stories from CESCI members who saw Allison and Nigel in action not only providing emotional and practical guidance in those early days but also advocating on their behalf for much needed diagnostic and therapeutic input and suitable wheelchair provision! There really isn’t a better person to take on this role. Good luck Allison!
- Streamlined Bladder and Bowel Care
Coloplast who have been working in partnership with CESCI for some time and recognise the difficulties that CESCI members experience getting their bladder and bowel care under some control, have recently appointed a dedicated specialist nurse to ensure CESCI members get the right products and bladder & bowel care promptly reducing the red tape very significantly. Having heard from so many CES sufferers how frustrating and upsetting this process can be, I am really excited about the improvements that this offering will bring to the lives of CESCI members. The collaboration between Coloplast and CESCI is a testament to their commitment to patient care.
- Empowering CESCI Members with Proper Wheelchairs
Nigel has been a whirlwind of action too! His collaboration with the Spinal Injuries Association and the Wheelchair Alliance has resulted in a standardised letter for CESCI members to improve the referral process for provision of wheelchairs. This letter emphasises the importance of having the correct type of wheelchair, a crucial aspect of improving mobility and overall quality of life for CES and other spinally injured patients.
- Educating Local Wheelchair Services
Nigel and Allison aren’t stopping there. They are actively involved in educating their local wheelchair services on the unique needs of CES patients. This proactive approach ensures that CES patients in their area receive the appropriate equipment and support.
- Advocacy on the Political Stage
It is great to hear that their local MP is eager to support CESCI’s causes and getting behind them in their mission to ensure that the recent CES pathway is adopted by as many healthcare trusts as possible. Such advocacy is essential to ensure that CES patients receive the care they deserve and that long term disability is prevented where possible.
A Glimpse into the Future
As we celebrate the accomplishments of CESCI, we also look forward to what lies ahead. The future is looking bright for CESCI with Adele, Claire and Roger, three fantastic individuals joining the team. They bring their own lived experiences of CES to the table and will undoubtedly extend the group’s reach even further with Claire and Roger supporting members in the North of England and Adele focusing on the members in Scotland
With the introduction of the pathway for those with suspected CES, CESCI will vigilantly monitor its implementation, ensuring it benefits all patients consistently.
All of CESCI’s dedication to CES patients is nothing short of remarkable. Their tireless efforts, advocacy, and support network have already made a significant difference in the lives of those living with CES. We are honoured to continue our partnership with them and eagerly anticipate more achievements on the horizon. Stay tuned for more updates from the frontlines of CESCI’s incredible work!
