Since joining the JMW cauda equina syndrome (CES) specialists more than 10 years ago, I have been consistently shocked by the substandard care provided to people affected by this devastating condition.

A delay in treating CES can leave patients with mobility problems, severe bowel and bladder problems and loss of sexual function and a significant number of relatively young people develop it every year.

However with the help of patients who have bravely shared their story, organisations such as the Cauda Equina Champions Charity and media who have covered the issue, that may be slowly starting to change. Organisations responsible for investigating NHS care to improve patient safety are starting to take note of the present issues with CES care and the high personal and financial cost of those who suffer a delay in treatment.

New report finds problems

Most recently, on 18 August 2021 the HSIB (“Healthcare Safety Investigation Branch”) published its report on the “Timely Detection & Treatment of Cauda Equina Syndrome”.  

The HSIB was set up in 2017 to improve patient safety by undertaking investigations into NHS-funded care across England.  Their most recent report focuses on the adequacy of pathways of diagnosis and treatment for patients exhibiting potential red flag symptoms for CES and can be found here.

The investigation started in 2019 when HSIB became aware of ongoing safety issues in respect of patients presenting to NHS staff with potential cauda equina syndrome. It set out to understand what is currently happening with regards to diagnosis and treatment of CES and make safety recommendations accordingly.

Unfortunately, the investigation found that the treatment pathway for CES depends on which hospital the patient is initially assessed at. From a personal perspective, and having dealt with a significant number of cases involving a delay in diagnosis and treatment of CES, I have seen significant variances in local practice and an inconsistent application of the existing guidelines.

The HSIB report also found that:

• National standards of care state that MRI scanning must be undertaken as an emergency where CES is suspected.  The investigation heard about varying timeframes for patients.
• Many local hospitals cannot use their MRI scanners out of hours as they do not have a sufficient number of suitably trained staff.
• Safety-netting leaflets on the symptoms associated with CES were inconsistent in their level of detail and language.
• In the report the HSIB makes a number of recommendations to improve patient care, including recommendations that:
• The British Association of Spinal Surgeons (BASS), supported by the Royal College of Surgeons of England and the Royal College of Emergency Medicine, develop a decision-making tool to support the identification of patients who need an immediate MRI for suspected CES.
• NICE (National Institute for Heath and Care Excellence) update its current low back pain guideline to include the symptoms and initial management of CES.
• NHS England and NHS Improvement develops a national CES pathway.

Ultimately, the overarching message in the report was to ensure that there is no delay in accessing the right clinical tools if CES is suspected as this would greatly reduce the risk of long-term complications for patients.

Of note, the British Orthopaedic Association has already started to develop a standard for trauma and orthopaedics to support the diagnosis and management of CES in the non-specialist setting.   

In my opinion, the proposals for a clear and robust national pathway covering both the diagnosis and management of CES is to be welcomed.  My hope is that the recommended changes will be brought in at the earliest opportunity in order to improve the level of care provided to patients throughout the country. I have seen many incidents similar to the case study summarised in the HSIB report, and the consequences of a delay in diagnosis and treatment can be catastrophic for the patient and their family. 

For more information on other guidance and reports for CES care please see below:

·       A NICE (“National Institute for Health & Care Excellence”) clinical knowledge summary provides guidance on assessing patients with low back pain.

·      In 2016 the British Association of Spinal Surgeons (BASS) published a note on the standard of care for patients presenting with potential CES.

·     In February 2019 the GIRFT (“Getting It Right First Time”) programme, a national programme designed to improve the quality of care within the NHS, published its   national report on spinal surgery. One of the key recommendations from that report included the proposal that patients with suspected CES had access to emergency MRI scanning, which must be undertaken at the patient’s local hospital.