Through significant delay in the diagnosis and treatment of Cauda Equina Syndrome (CES), Anne now lives with a host of lifelong consequences – and was told by surgeons she avoided being left paralysed by a matter of hours.
Here, we find out why Anne believes greater awareness of CES – among medics and the general population alike – is essential, and how the devastating condition should never be regarded as ‘just a bad back’
“I was in so much pain, excruciating pain, worse than the pain of having my children. But time and time again, I wasn’t treated as a priority and I just had to get on with it.”
Anne’s experience of Cauda Equina Syndrome and the lack of recognition of her condition and its severity is truly shocking.
Having consulted her GP and been told to take over-the-counter medication for a bad back; to being rushed by ambulance to hospital and given morphine for her pain, only to be sent home by a doctor and told to rest; to being told she would be given an MRI scan, only to find out it was in fact a physiotherapy appointment for a bad back; to a delay in surgery once finally admitted.
The consequences Anne now lives with are many – bowel and bladder dysfunction, total numbness around the pelvic area, loss of sexual function, neuropathic pain, leg weakness, as well as the fact she can no longer work, and has developed Post Traumatic Stress Disorder (PTSD). At one point, Anne was left feeling suicidal.
Anne’s situation shows what can happen as a result of the lack of action by medics to properly treat CES – a condition which occurs when nerve roots in the lumbar spine are compressed, and urgent treatment is essential to preserve many aspects of a person’s movement and independence.
“My life has been ruined and I’m not going to get it back. And all of this because I wasn’t listened to or taken seriously,” Anne tells NR Times.
“Things have to change in how we regard CES. For doctors, they shouldn’t just think people have a bad back and that’s all it is – they should start at CES and eliminate that first. If they’d done that with me, I wouldn’t be in anything like the situation I am now.
“And for society in general, I want people to know about CES, what the red flags are, what to do if you think you may have CES. If there is better awareness, then people will be able to fight harder and challenge what they’ve been told in ways that I couldn’t.
“I wish so much I knew then what I know now – but if we can change things for other people, then at least some good has come out of what I continue to go through every day of my life.”
Lack of CES recognition
The ordeal for Anne, then aged 47, began when she began to experience some pain and discomfort in her back.
“It wasn’t a bad back, it wasn’t the kind of discomfort where you’d pulled a muscle doing the gardening, this was different. You know your own body and this just didn’t feel right,” she recalls.
Having been sent away with some over-the-counter pain relief, Anne continued to battle the pain for the next two weeks, juggling her busy working and family lives while experiencing constant discomfort – although taking reassurance from the fact it was supposedly ‘nothing serious’.
However, one night the pain became agony – “it was like a bolt of lightning through my back,” remembers Anne – and she had to call an ambulance after being struck down by the pain while home alone.
“I was screaming, it was absolutely awful. I’d been taking painkillers like Smarties before that, trying to get better and not overreact, but then suddenly the pain was unbearable,” says Anne.
“I couldn’t walk, so the ambulance men helped me down the stairs – it was only when I came to put my shoes on that I realised I could no longer feel my foot.
“I was in so much pain in the ambulance that they gave me morphine. But when I arrived at the hospital and saw the doctor, he didn’t listen to me and told me to continue to take the painkillers and go home.
“I saw the ambulance men in the corridor as I was leaving and they genuinely couldn’t believe I was being sent home. But the doctor had given me his professional opinion, and I had to trust that.
“CES was never mentioned, it wasn’t even something I’d heard of. I know now that literature exists to highlight the ‘red flag’ symptoms – if I was given that, I’d have been straight back to the hospital.”
Delay in treatment
After spending the weekend in agony, Anne visited her GP surgery again – but this time was referred for a scan by a doctor who raised concerns over CES for the first time.
But despite the recognition by the GP, this was not acted on upon referral to the hospital. The promised ‘urgent’ call to book an MRI scan came 24 hours later, and her appointment – deemed ‘non urgent’ – was not scheduled for a further 48 hours.
When she arrived at the hospital for the promised scan, it emerged she was actually visiting a physiotherapist – but thankfully, on this occasion, CES was recognised.
“I was clearly being referred through the pathway for someone who has a bad back, nothing about this was regarded as an emergency until I saw the physio,” says Anne.
“I was so fortunate to see someone who did know about CES, she knew instantly there was something wrong. I still thank God for her. She was the first person to show me the picture of the spine with the red flags – and straight away, I knew that was what I had.
“She arranged for me to have an MRI scan straight away, and within two hours I had a phone call saying I needed emergency surgery. I couldn’t believe what I was hearing, I was in total shock.”
Having arrived at hospital as she was told to do, although a lack of availability at a specialist spinal centre meant she was on a general ward, staff were clearly not expecting Anne.
“I had to explain what had happened, why I’d been sent, they knew nothing about it. I was in a ward with elderly people for over 24 hours before I was blue-lighted to another hospital, where I was told I’d have my surgery,” she says.
Anne was given her own room and told to prepare for surgery imminently – but 48 hours later, she had still not undergone the operation which was so essential to her future health and independence.
“They said so many times they’d be coming for me and they never did. I was nil by mouth, waiting for my operation, only to be told it was too late now, it must be tomorrow. I was told there weren’t enough staff to open the operating theatre – but even at this point, I still didn’t know how urgent it was that I had this surgery,” she says.
“It was only when my consultant – who was absolutely fantastic and went on to support me for a long time after the operation – told me I was hours away from being paralysed that I realised this was very serious.
“I found out that the operating theatre had in fact been opened during the time I’d been waiting, for surgery on someone who had been stabbed. I appreciate that is life or death – but is the prospect of someone facing paralysis not important?”
The need for change
Having had no knowledge of CES, Anne was shocked to discover the lack of awareness of CES – and particularly its severity – among the medical teams too.
While it took a number of medical interventions for CES to be recognised, the further delay with surgery showed Anne that its life-changing impact is still not fully appreciated.
“If you mention you’ve got pain in your back, then it’s regarded as being a ‘bad back’, so a slipped disc or pulled muscle. But CES couldn’t be further away from that,” says Anne.
“This is too important in people’s lives to get wrong. The pain I have all of the time is horrendous, people can’t understand how bad it is, and that’s on top of all of the other things I’ve been left with. I’ve lost a lot of friends, I don’t socialise anymore. This has genuinely ruined the life I had.
“If CES had been recognised so much earlier, I could have had a much better quality of life. But I wasn’t listened to. I didn’t feel I had a voice and felt totally overlooked.”
Anne hopes greater awareness of CES among medics will lead to change in how patients displaying the red flags are approached.
“I’d like to see CES as a starting point. If someone comes in with back pain, ask about the other CES symptoms, rule them out first,” says Anne.
“It is surely far better for the person, and for the NHS, if doctors take the time to find out whether this really is a serious condition and then do something about it quicker, rather than just dismissing people and telling them to take painkillers for a supposed bad back. They need to listen to people and their genuine concerns.
“There have to be lessons learned from this, and for CES to be taken seriously, so people aren’t dismissed like I was.”
More general awareness is also important in change being able to happen, she says.
“With hindsight, I think why didn’t I ask more questions, why didn’t I keep going back, why didn’t I refuse to let them send me home – but all I can do is hopefully help to change things for other people,” says Anne.
“If people knew the red flags, if they knew was CES is, then they can recognise it themselves. The symptoms are so different to a bad back, and the pain is so bad, that no doctor could tell them this wasn’t what they had. You know your own body and you know when something is badly wrong.
“CES needs to be more widely known about, so that people know the symptoms and seek medical attention immediately. It is not something that can wait.”
The support of specialist lawyers
Anne turned to Slater and Gordon law firm for support in making a claim against the hospital for its failure to recognise CES and give treatment urgently enough.
Having gone through her ordeal in 2015, it took until 2022 for Anne’s case to settle, with medical negligence experts fighting on her behalf to secure a £500,000 settlement for her ongoing care requirements.
Lara Bennett, senior associate at Slater and Gordon, settled the claim for Anne. In addition to enabling her client to access bespoke therapies to support her physical and psychological needs, she was also able to secure an interim payment to support Anne and her family during the long-running claim process.
“What happened was totally unacceptable and wholly avoidable. I think that’s what makes it all the more devastating, that this was so needless. If CES had been recognised earlier, Anne wouldn’t be left with the lifelong consequences she has been,” says Lara.
“It is awful to see the missed opportunities in this case, and if urgent action had been taken, it could have ensured the outcome for Anne was very different. There is no excuse for the failings here and lessons must be learned.
“CES is an absolutely devastating condition, and its impact can be seen in this case. This has been totally life-changing for Anne. Physically, psychologically, emotionally and practically, Anne has suffered greatly – and in addition, she has had to move out of the home she loved into a new property which is more suited to her needs, and she can no longer work.
“We echo and fully support Anne’s desire for change to happen in how CES is regarded, particularly within the medical profession. Patients have a voice and deserve to be listened to – CES is not a bad back and should never be treated as such.
“CES must be given recognition as the life-changing condition it is by every medical professional – its consequences are too devastating for that not to happen.”
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