The Importance of Dedicated Cauda Equina Syndrome Support and Rehabilitation Services

Despite the reassuring increase in awareness for Cauda Equina Syndrome over recent years, awareness of the Red flags changes little for patients living with this condition.

There are still huge issues with non-existent or inadequate care pathways within the NHS.

Improved education about the chronic, post-operative issues of Cauda Equina syndrome amongst staff is urgently needed to encourage empathy and understanding for CES patients.

Referrals to services at Spinal centres are difficult to obtain and may take many months. Even though Cauda Equina patients are entitled to treatment there, this is often battle for those who are perhaps perching on the threshold of the criteria. Many GP’s are at a loss at to what follow up is needed for a Cauda Equina patient after discharge.

Ultimately, people living with CES are still not getting the care/support/rehabilitation/understanding they so desperately need to minimise the trauma and social isolation they experience. Early intervention and support are paramount to achieving the best outcomes and ensuring the emotional and physical toll is minimal.

The stories we hear in our support group, over and over, motivate us in developing our dedicated services for patients. It is so important to acknowledge every aspect of Cauda Equina Syndrome.

Often, in a genuine effort to address incontinence, mobility and pain, the more personal problems of intimacy, relationships, and self esteem are often overlooked. These are as damaging to a patient’s wellbeing, as living with the physical restrictions are.

Our aim is to reduce the impacts of Cauda Equina syndrome as much as possible, through education of healthcare professionals and service providers whilst supporting the patient in all aspects of lifestyle, management and selfcare.

Spinal centres do not have the resources to cope with the under reported numbers of Cauda Equina patients. Alternative pathways need to be created to deal with these complex issues with early intervention and clear advice for healthcare professionals.

We believe that when the NHS start recording CES cases that occur annually in every GP’s surgery, or hospital, not just through neurology services in specialist centres, the numbers will prove to be unsustainable within the current parameters.

Cauda Equina Syndrome patients, living with incomplete spinal cord injuries outnumber those with complete injuries every year and yet care pathways and access to services are only accessible to a small percentage.

Once the NHS acknowledges the importance of recording this information and gets to grip with the figures, the true cost of CES, both in litigation and in the personal lives of so many, will force the change needed to improve outcomes for this patient group.

Our work is guided through the nurture of the patient as a whole being, to address issues at home and in the workplace, as well as offering solutions to the more obvious impacts of CES. We are creating unique residential workshops for newly diagnosed patients and a dedicated program to support them in the first twelve months following a diagnosis.

Through our close work with our patient group, by listening to and in encouragement of their contribution, we have a unique insight into their needs. The’ Patient Voice’ is our guiding light and is at the forefront of the work we do.

It is our privilege to support people living with Cauda Equina syndrome and humbling to see how they show courage and determination through the most difficult times. We are blown away by the love and support shown between complete strangers every day, who are simply brought together by sharing same condition.

We hope that one day Cauda Equina Syndrome will truly become the rarest of conditions it is reputed to be.

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