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Medical Negligence

Empowering Self-Advocacy with Cauda Equina Champions Charity

Litigation nurse, Matt Brown, shares how those living with Cauda Equina Syndrome can take an active role in their wellbeing to receive treatment suitable to their needs.

11 July 2023

Attending events where experiences and knowledge are shared and self-care is promoted are both enriching and empowering. Matt Brown, litigation nurse, was invited to the annual Cauda Equina Champions 2023 meeting in Liverpool.

Cauda Equina Champions works to promote the physical and mental health of people living with Cauda Equina Syndrome (CES). The reach and support network that Cauda Equina Champions has built is astounding.

What is cauda equina syndrome?

Cauda Equina Syndrome is a debilitating condition which affects the bundle of nerves at the base of your spine, the Cauda Equina (Horse’s Tail). People who suffer from this condition face many difficult challenges, with one of the most significance being bowel and bladder dysfunction.

The open forum format fostered conversations surrounding rehabilitation therapies, what treatments worked for whom and what didn’t, socioeconomic struggles and solutions, remarkable stories and thought-provoking experiences were shared among like-minded peers who understood, from personal experience, the difficulties of living with CES.

Matt was able to shed light on crucial topics, such as bowel and bladder care and the systemic effect of poor management, from his experience and clinical knowledge as a registered nurse.

Often considered a sensitive topic, our bowel is the most underrated organ. Maintaining correct or ‘normal’ function can be a daily struggle with CES. It can cause incontinence, retention, loss of sensation, as well as many other serious complications including life-threatening conditions such as autonomic dysreflexia (AD). More common in higher spinal cord injuries (SCI) involving the thoracic nerves, AD is when the autonomic nervous system is in dysregulation and can lead to uncontrolled high blood pressure and cardiac arrhythmias. Not only does this daily struggle have an obvious physical impact, but there is also the mental impact on emotional well-being and self-esteem, which cannot be understated. Members in attendance were surprised when Matt told them that it is estimated that 90% of serotonin, also known as ‘the happy hormone’, is produced in the gut.

Being well-informed about the impact of CES on bowel and bladder function is the first step towards self-advocacy. Being able to connect with and seek out healthcare professionals that have specialist experience of working with people who have CES can provide invaluable guidance, support and advice to allow them to choose a care plan which is holistic and suits their individual needs.

Throughout the day alternative therapies were discussed such as acupuncture and hydrotherapy, Matt was able to share information on assistance devices and members fed back what had worked for them and what had not, with other attendees being able to learn from their peers.

Experimenting with different approaches is key to finding what works for you as an individual. This is so that you’re able to manage your symptoms, especially your bowel and bladder care, thereby maintaining physical health but also emotional well-being. One of the events highlights was listening to Psychosexual Therapist Michelle Donald, who herself suffered a Spinal Cord Injury, talk about the importance and significant of intimacy and sexual expression. Living with CES can be emotionally draining, and seeking mental health support is central to addressing the impact of the condition.

Empowering individuals to take an active role in their own care is essential for maintaining overall well-being, and that is why the work done by Cauda Equina Champions is so important. Sharing insight into how others live with CES can provide encouragement, comfort, and support. By taking an active role in managing these key aspects of your life, you regain control which might have been lost. Education, support, and communication are all vital to self-advocacy and by adopting more self-care practices you can lead a fulfilling life.

How Slater and Gordon can help

If you believe you’ve had a delayed diagnosis or misdiagnosis in recognising Cauda Equina Syndrome, or you believe the medical care and treatment you’ve received following your diagnosis has been substandard, contact our medical negligence solicitors. Alongside legal experts, we also have an in-house medical team who will help you through the claims process and identify where in your medical journey things went wrong.

Our specialist medical negligence team work closely with partners and charities, such as Cauda Equina Champions, to further assist with any rehabilitation, treatment and peer support you might need throughout your journey to recovery.

Hear how we supported our client with her delayed diagnosis of Cauda Equina Syndrome to help build her future independence.

For more information, please contact us online, or call 0330 041 5869.

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