Cauda Equina Syndrome: Why red flags are still being ignored

Have you heard of cauda equina syndrome (CES)? It’s a rare condition but one that can have devastating and life changing consequences if it isn’t picked up quickly. There are a number of red flags that someone could experience; back pain, sciatica, saddle numbness and difficulty urinating. If someone presents at A&E with these red flags they are supposed to undergo an MRI, ideally within four  hours, and if the scan shows evidence of CES they should undergo emergency decompression surgery. It all sounds straightforward in principle.

However, time and time again we are hearing, either anecdotally or through people approaching us with potential claims that these cases are being missed. And these stories share a lot of similarities; it’s just a bad back, go home and take some paracetamol and call your GP. Bladder incontinence? That’s normal if you’ve had children (!) or ‘you probably just struggled to get to the toilet in time’. These dismissals can have catastrophic outcomes. Just recently, two women, Toni-Claire Miller and Hayley Combe, shared their stories with the BBC about how missed CES symptoms left them with permanent injuries. Toni-Claire was not physically examined at three separate GP appointments, while Hayley was twice sent home from hospital despite presenting with clear red flag symptoms. Their experiences are sadly all too familiar to our clients.

Time is of the essence with CES claims; it can mean the difference between retaining your mobility and losing it. It can be the difference between normal or slightly altered bladder function or a life time of self-catheterising. People’s poor experiences at hospital are, in my view, a combination of lack of education and training on the part of the staff, mixed with a NHS which is short staffed and underfunded. But delaying or denying a scan often costs far more, not only in human terms but financially too. The lifelong cost of care, home adaptations, and rehabilitation for someone left paralysed by missed CES is enormous and entirely avoidable.

Because CES is a life altering condition the compensation for CES claims can be high as people often require adapted accommodation and future care. The cost to the NHS was recognised and as a result a ‘Getting It Right First Time’ Pathway was introduced in 2023. GIRFT was designed to reduce the delays in diagnosis and treatment for patients presenting with CES. However implementing GIRFT is not mandatory and research Bolt Burdon Kemp carried out in 2023 showed that only 20% of trusts had implemented the pathway; 18% had not yet but planned to do so in the future and 62% had not implemented the pathway nor did they plan to. This means that in most parts of the country, the same failings that harmed Toni-Claire and Hayley could happen again today.

At Bolt Burdon Kemp we have recently launched our manifesto calling for the government to make changes in certain areas. One of these areas is the postcode lottery that comes with healthcare and CES is a clear example. Whether your local hospital has implemented GIRFT could have life changing consequences. Until the government makes this pathway mandatory and ensures equal access to urgent MRI scans across the country, patients will continue to pay the price for inconsistent care. We need national leadership, not luck, to make sure that when the red flags of CES appear, they are acted upon immediately and decisively.