Better understanding of CES would have prevented the damage I now live with

Better understanding of CES would have prevented the damage I now live with

Charlie Haynes, 48, suffered a delay in diagnosis of CES in 2015 with catastrophic consequences for his work and personal life. Sally Leonards, a specialist cauda equina solicitor at JMW, has supported Charlie and helped him to build a new life.

To support Cauda Equina Syndrome Awareness Day 2023, Charlie explains why awareness is so important to him personally.

Why is awareness of cauda equina syndrome so important?

Awareness is key to both professionals and patients alike. Professionals have only a limited understanding, especially in non neuro specialist roles. An understanding of the full range of symptoms is vital in correct diagnosis and the subsequent urgent treatment needed. Many professionals only focus on incontinence and dismiss retentive issues, which are equally indicative of CES. Patients need to understand the full range of reg flags and acknowledge the urgency of these. They can only do this through awareness of CES and the red flags that indicate immediate medical attention is required. 

What difference would more awareness of the red flags have made in your case?

I was aware of the red flags in my case but the medical professionals I encountered at numerous levels were dismissive, and I innocently trusted professional medical doctors and surgeons. A better understanding on my part and theirs could have resulted in immediate medical intervention and thus prevented the permanent damage that I now live with.

What do you think needs to change to improve medical professionals’ understanding of CES and the red flags?

I think this issue is far more complicated than individual understanding of CES. I have met some fantastic doctors who have a good knowledge of CES and follow the correct paths. However, their colleagues then dismiss previous observations and instructions, either down to ignorance or internal pressures from the NHS trusts involved, for example a reluctance to recommend MRI scans as the trust is struggling to staff that department, or lack of beds etc. I have encountered both of these as excuses. I understand the NHS is under immense pressure regarding demand and resources, however I feel that once a medical professional has identified potential CES, then the process that exists needs to be streamlined and enforced far better than the NHS is currently doing. 

What have you been able to put in place to manage your CES?

This is difficult to put into words. Living with CES is an evolving rollercoaster and different tools are needed to manage the array of challenges CES bring about daily. I would say though that having a support network via the CES charity outside of the family helps massively. These are people who also live with CES and understand what you are living through. The family knowing and understanding CES is also massive. It took them years to fully accept the changes in my life and theirs but the key to this is talking. Sounds simple but it is difficult to do sometimes, and it is important just to take time for yourself. 

What message would you give to your past self while you were going through the trauma of being misdiagnosed?

In the early days following my accident which led to CES, I would say, with no disrespect or malice, not to accept what medical professionals say readily. Listen to your body and don’t be afraid to challenge the professionals if you don’t agree or feel they are wrong. I wish I was aware of the CES support group during my early days as they have an abundance of knowledge and advice. For me, all this came too late after the damage was done.

After my operation, if I could give my past self a message, I would say be patient. Nerve damage takes a long time to repair or adapt to. Don’t be hard on yourself or push yourself. Take one day at a time. Finally, and probably most importantly, I would tell myself to talk. Talk to family and others who live with CES. They can help, give advice or simply be there to listen to you offload your frustrations and fears.

For more information about the Cauda Equina Champions Charity that Charlie was helped by visit their website.

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