NHS improvement programme Getting It Right First Time (GIRFT) have announced the release of the National Suspected Cauda Equina Syndrome (CES) Pathway. Its aim is to provide clarity and clear guidance for doctors and other healthcare clinicians on how to diagnose and effectively treat patients with suspected or confirmed cauda equina syndrome.
The CES Pathway has been created by a multidisciplinary team of specialists, led by Consultant Spinal Surgeon and GIRFT Spinal Services Clinical Lead, Mike Hutton. It has the support of professional organisations and charities, including The Society of Radiographers, Society of British Neurological Surgeons, British Association of Urological Surgeons, British Orthopaedic Association, Chartered Society of Physiotherapy and the Spinal Injuries Association (SIA). It has been released alongside the Royal College of Radiologists’ (RCR) Clinical Imaging Board’s guidance MRI provision for Cauda Equina Syndrome to provide a joint focus on speeding up the diagnosis and treatment of patients with suspected CES symptoms.
CES is a life-changing, emergency, spinal condition which requires swift recognition, referral, MRI imaging and surgical intervention. Lack of awareness of the condition and its red flag signs and symptoms, delays in MRI scanning and reporting, and delays in specialist spinal decompression surgery result in permanent disability which in many cases should have been avoided. The CES Pathway aims to reduce the harm caused by these delays but continuing lack of professional awareness and shortage of resources means that there are still significant challenges to overcome.
What is CES?
Cauda equina syndrome or CES is a rare but serious spinal condition which is caused by compression of the nerves in the spinal column. It affects 1-3 out of every 100,000 people.
Early symptoms of CES may initially be confused with more common back pain or sciatica, but doctors are expected to ask and examine their patients to identify whether they have one or more CES ‘red flag’ signs and symptoms. If CES is suspected, the condition must be treated as a medical emergency and the patient must be referred to hospital immediately for an MRI scan. If the diagnosis of CES is confirmed by the MRI scan, the patient must undergo urgent decompression surgery to relieve the pressure on the cauda equina nerves in their spinal canal.
Any delay in diagnosis, referral, MRI imaging or reporting, or surgery increases the likelihood of permanent disability from impaired mobility, bowel, bladder and sexual function. Many people with CES disability find this causes difficulties with work, daily activities and self-care, mobility both at home and outside, and financial difficulties. For some this also leads to psychological injury.
Why do CES patients need a pathway?
CES is rare and surprisingly unknown for such a life-changing and potentially disabling neurological condition. It presents differently in different people as the condition features a constellation of symptoms and signs. Many GPs, hospital doctors, A&E, ambulance or NHS 111 or 999 staff may rarely, if ever, have to deal with cauda equina syndrome in the course of their career.
In 2019, GIRFT’s national review of spinal services in more than 120 hospitals found significant ‘unwarranted variation’ in the detection of CES. Inconsistencies and variations in response to CES occurred at all stages of treatment, from the timing of imaging (MRI scan) and surgery through to patients’ postoperative care. GIRFT reported that many patients with suspected CES were not being referred in accordance with agreed treatment protocols.
They referred to an ENTICE (Evaluation of National Treatment and Investigation of Cauda Equina) national audit of data from 28 spinal emergency units and 4,441 referrals made within a 6-month period. The audit revealed that Society of British Neurological Surgeons (SBNS) and British Association of Spine Surgeons (BASS) standards of care for patients with suspected CES were not being met. GIRFT described access to emergency MRI scanning as the cornerstone of these standards, as MRI imaging often dictates whether emergency surgery needs to take place. The audit found that, depending on the source of the referral, patients with suspected CES waited to be scanned from four to over 13 hours. GIRFT concluded that as nearly a quarter of medical negligence claims for spinal surgery in England related to CES, this variation in care standards was clearly not acceptable.
In 2021, healthcare watchdog, HSIB highlighted the safety risks to patients from delayed diagnosis and treatment of cauda equina syndrome. HSIB called for a national pathway for suspected CES, to help reduce variation and improve patient outcomes.
What will the CES Pathway do?
The CES Pathway aims to provide guidance for all who are involved in the care of patients with suspected CES, from their first presentation (such as seeing their GP) to treatment. It aims to streamline the entire process and sets out key timescales in order to improve the outcomes for patients with suspected and confirmed CES. The pathway contains guidance for all settings, including primary (such as GP), community or acute (eg A&E) care, and for situations which require onward referral or transfer of the patient.
The CES Pathway highlights the importance of triage and the recognition of CES red flag symptoms mandating emergency (immediate) referral to the nearest facility with emergency MRI provision. It also sets out additional warning signs that could suggest that the patient is at risk of CES and require urgent (to be seen within two weeks) referral. It refers to detailed safety-netting information that must be given to patients with back pain or other related symptoms whilst they wait for their urgent appointment. Safety netting information helps patients know how and when to seek emergency help if their symptoms get worse or new CES symptoms develop before they are seen.
Further detailed guidance then aims to speed up each stage of the onward referral process to ensure patients have their diagnostic emergency MRI within four hours of the request for the scan. This is a critical stage in the patient’s journey from development of symptoms to surgical treatment, but is often the cause of delay, leading to avoidable disability and medical negligence claims.
Welcome features of this part of the CES Pathway include reminders to clinicians that emergency MRI scans for suspected CES should not be delayed by:
- waiting for discussions with the on-call spinal service;
- queuing behind other patients’ routine or elective MRI scans;
- waiting for an (unavailable) radiologist to report on the scan.
The CES Pathway makes clear that emergency MRI scans for CES must take priority over less urgent scans, and that surgical teams can review out-of-hours MRI imaging to speed up decisions to perform time-sensitive, emergency decompression surgery. Where a radiologist is available to report on an MRI scan within working hours, the scan must be reported within one hour.
All patients who have ongoing symptoms after surgical treatment for cauda equina syndrome should be referred for follow up to the regional spinal cord injury unit through the Online National Referral System.
Awareness is the key to reducing long-term disability from CES
The announcement of The National Suspected Cauda Equina Syndrome (CES) Pathway is a positive step towards better and more reliable care for this life-changing condition.
We hope that the joint release of the CES Pathway and RCR’s MRI guidance signals a clear message and will remove some of the barriers that have delayed CES patients’ access to vital MRI imaging, and that this will lead to earlier surgery and reduce long-term disability.
We remain concerned that lack of awareness and training amongst GPs, triage/emergency and acute hospital staff remains a significant barrier to early recognition and diagnosis of CES. Boyes Turner’s skilled CES claims specialists and our charity partners at Cauda Equina Spinal Cord Injury regularly talk to people living with CES disability whose treating clinicians had no awareness of CES as a condition. We still see cases where CES red flags were mentioned in 999 or NHS 111 calls but didn’t result in emergency ambulance responses or advice to attend hospital without delay.
CES is a clinical diagnosis based on signs and symptoms, that is then confirmed by MRI. The first step towards recognition and understanding of the condition is training and greater awareness.
If you have suffered severe injury or disability as a result of medical negligence or have been contacted by HSIB/HSSIB, MNSI or NHS Resolution, you can speak to one of our experienced solicitors, free and confidentially, for advice on how to respond or make a claim, by contacting us here.