The Bolt Burdon Kemp Spinal Team represents clients who’ve experienced spinal injuries, including conditions like Cauda Equina Syndrome (CES). We work closely with organisations such as the Cauda Equina Spinal Cord Injury (CESCI) group to raise awareness about Cauda Equina Syndrome and provide crucial assistance to affected individuals.
We conducted two separate studies on the perceptions of CES and treatment – one seeking the views of medical professionals treating CES, and the other seeking patients’ views. The findings from our study shed light on the difficulties faced by patients and in particular the poor patient outcomes CES patients experience under the care of their GPs.
Understanding Cauda Equina Syndrome
CES is a spinal injury that occurs when the nerves at the base of the spinal cord are compressed. Early diagnosis and prompt treatment, which may include surgery and rehabilitation, are critical for the best chances of recovery. If left untreated, CES can lead to permanent paralysis turning it into a lifelong disability. Patients often experience severe pain, motor weakness, sensory loss, and incontinence, making it a complex and life-altering condition.
The challenges facing CES patients
Our study revealed alarming challenges faced by CES patients when it comes to their care, especially when under the care of GPs. For patients who are not treated in specialised spinal cord injury centres, 65% feel that their GPs do not understand or are not supportive of their condition. The responses from that 65% demonstrated where there were specific gaps in the following areas:
- Lack of mobility support: 81% of patients do not feel they have enough support to manage mobility issues.
- Pain management: 81% of patients feel they lack adequate support for managing pain.
- Incontinence challenges: 60% of patients struggle to find support for CES-related bladder incontinence, and 47% for bowel incontinence.
- Sexual health: 60% of patients do not feel they have enough support to manage issues related to their sex life.
- Mental health: A staggering 85% of the patients do not feel they have enough support to manage their mental health.
These findings highlight the urgent need for improved care and support for CES patients under the care of GPs.
Medical professionals’ perspectives
Our study also sought the views of medical professionals who treat CES. Their responses highlighted a concerning lack of understanding about the condition within the medical community:
- 50% of GPs felt that CES patients are treated with the same levels of empathy as other spinal cord injury (SCI) patients.
- 46% agreed that CES patients have the same access to advice and medical treatment as other SCI patients.
- Only 23% of surveyed professionals indicated that almost all their patients were under the care of one of the nine SCI rehabilitation units in the UK.
A call for change
From these findings, it’s clear that many patients with CES aren’t receiving the care they desperately need. Access to proper rehabilitation and care can make the difference between someone returning to work, engaging with family life, and maintaining good mental health.
We call for the establishment of more specialised spinal injury rehabilitation centres across England and Wales. These centres would not only benefit CES patients but also those with other spinal cord injuries, offering them better patient outcomes.
Our data suggests that the immediate priority should be providing greater support and increased training for GPs regarding CES. This training would enable them to identify and diagnose CES earlier, better support CES patients in accessing appropriate rehabilitation and provide better mental health support.
Bolt Burdon Kemp is committed to improving the lives of those affected by Cauda Equina Syndrome and similar conditions. Our study findings highlight the urgent need for enhanced training for GPs and access to rehabilitation for CES patients. By addressing these issues, we aim to provide hope and a better quality of life to those affected by this life-altering condition.