“The NHS should be saluted for my full stroke-recovery�

Kate Allatt shares the story of her amazing recovery from Locked-in Syndrome, and gives an honest insight into the medical care she received.

39-year-old fun-loving mother-of-three, Kate Allatt, had never really had much of a chance to form an opinion of the NHS. Apart from a rugby accident back in her student days, and a short three-day stint in hospital after having a caesarean with her third child, she enjoyed a happy and healthy existence.

This is because Kate Allatt is what you would call a fitness fanatic. Running 70 miles a week was just the tip of the iceberg of running a family of five, and with her health-conscious lifestyle it was no surprise that her visits to the doctor were so few and far between.

Which is why no-one was more surprised than Kate herself when she woke up in hospital three days after suffering a stroke-induced-coma on February 10^thof last year. But the shock of waking up in hospital was to pale in comparison to the shock she felt when she realised that she was suffering from Locked-in syndrome, able, only, to blink her eyes.

Kate’s story

Eight months later, Kate and her story had become a celebrated part of the media. Because although the medical profession had all but given up on beating Locked-in syndrome, Kate defied the odds by recovering completely. Now gearing up to run a mile by Christmas, Kate’s story is nothing short of amazing. But despite enjoying a relatively positive relationship with the media thus far, an article recently published has upset Kate greatly, for sensationalising a story which really needs no fabrication. 

“There were a lot of errors throughout the piece”, she says, but admits to being most upset about the description of her NHS treatment. “They said I remembered hearing the doctors and nurses talking about my condition and that they thought I was brain-damaged”, she says. “This was not true and won't help the lives of so many others facing what I faced. I want to praise the good things I received from the NHS, but also improve and change the areas I think need improvement.”

Because despite her relatively little contact with the NHS before the stroke, Kate is now more than qualified to talk honestly about the service which so many of us take for granted. And talk honestly she does, as Kate hopes to improve the prognosis of a syndrome which is so frequently written off before it’s even started.

“The only issue I have with the whole stoke incident was not that it happened at all but the way I was dealt with by a very junior doctor five hours before my stroke”, she begins. For that morning Kate had not only been suffering with acute headaches, but was also beginning to slur. “I went to the walk in centre, and the brilliant nurse sent me straight to A&E - you could say I had every classic symptom of a stroke, and she was straight away alerted.” But despite her sincere gratitude to the first medical professional to address her case, on being met by a very junior doctor at Sheffield’s A & E, things were set to go downhill. “He examined me and concluded that because I’d set up a new business, was a mother of three, and had a husband that was away at the time, my headaches were the result of stress-induced migraines. I’ve never had a migraine in my life – but he sent me home with co-codamol and advice to rest all afternoon.” And rested she did, until she heard her sons fighting in the bath.  “I shouted at them to come down, and then asked my husband Mark, in what I thought was a very clear way ‘what is happening to me’ – but he heard total gobbledegook. He then rushed from the kitchen straight into the lounge as I slumped to the floor drifting in and out of consciousness – not more than five hours after having seen the junior doctor.” And Kate understands exactly why it is that he failed to diagnose her correctly. “My blood pressure was the only thing he’d measured at the time, and although it was within normal range, for me it was high”, she explains, alluding to her exceptionally high fitness level. “He also didn’t give me a CAT scan or MRI or anything else – and that is my issue. He overlooked my three weeks of headaches, and should have started at the worst case scenario and worked back.” But Kate is pretty sure they’d do that now, noting what she believes is not only a vital need to learn from experience, but a determination rife within the NHS to readily accept constructive criticism in order to better improve an under-appreciated but already ground-breaking service.

Getting better

Things were set to get better for Kate once she was placed in the hands of the consultant neurologists. “They put me straight into a coma, and saved my life, as did the staff at the ICU who kept me alive”, she says. “Let’s make no pretence about this – I was gravely ill. I was given 80/20 chance of survival. They diligently kept me alive and I am very very grateful to them for doing it.”

But as already mentioned Kate is determined to take from her experience and improve the experiences of others who may find themselves in a similar situation. “I think in my experience post-stroke there are so many learning areas we can take on and say ‘that was brilliant – the NHS did such an amazing job in this respect’ and ‘here are some of the errors’, but I feel lucky now that I can be a mouthpiece for those that can’t.”

This brings us on to the recent publication of her story which Kate is determined to correct. “Yes I heard them saying things about other patients, but they never said anything about me. There was a man next door to me who had had a second heart attack, and he was unconscious, and they had discussed withdrawing his feed with his family – I wasn’t supposed to hear that, but my hearing and sight were so acute because my other senses were gone, that I learnt how to lip read and hear things which are very quiet”, she says.

“They did used to come in the morning to wash me, for example, and would often come in twos because I couldn’t answer back. When there was just one nurse, they would have a one-sided conversation, ‘what should we do with you today’ and of course I felt patronised, but how do you communicate with someone that doesn’t communicate back? I don’t blame them for it at all.”

However, despite appreciating the difficult situation for all involved and attributing no fault to the staff for her frustrating circumstances, she is keen to suggest that although physically they were amazing, emotionally there are things that could have been done better.

“It was three and a half weeks before my friends smuggled in their own communication board – before that I’d been totally alone”, she says. “The staff should have implemented this earlier. They felt that I had minimal consciousness, or that I wasn’t cognitively there – my best friend always knew I was, but the staff told her not to use the communication board because when I go on to rehab they’ll have a different system of communication and I’d be confused – and that was their justification not to use it.” But even still she is both understanding and extremely grateful of the role they played. “Bear in mind, however, that ICU nurses are there to keep you alive”, she says. “That’s their specialism, and they did it very well – look at me! Emotionally I think that someone with similar symptoms needs a patient advocate, who will come in half an hour a day, sit with the patient, and use the board to communicate with them – because I never had that, I just had me and my thoughts.”

Making changes

But when even the staff in rehab didn’t seem to believe in her full potential, it just encouraged her to work even harder.

“I am extremely motivated and driven – if anyone ever said to me you can’t do something I’d come out fighting”, she explains. “Medically they’d given up on me, even in rehab, in my first review, but it made me say ‘sod you.’ I’d had enough of the pain, the indignity, and the quality of my life which was so poor, but then after that meeting I wanted to fight, because I realised that they had given up on me, and I thought ‘damn you damn you damn you – I’ll show you.’” And even though their pessimism was the silver lining in her recovery, Kate feels as if they should have involved her more as a patient. “In retrospect they should have asked me how I thought I was doing”, she says. “You should always establish what the patient wants to achieve in rehab, what their goal is - my objective was to get rid of the wheelchair, I didn’t care if I never spoke again, but walking was crucial. Therapy should be more patient centred. My physiotherapist was so good – she knew my objective, and she worked bloody hard to get me there, but my psychologist said to my best friend Alison that my objectives were sky high and that she had to get me to come down to their expectations. But Alison said ‘on the contrary, you’ve got to meet her half way’. I pushed boundaries every time.”

When asked whether she thinks they should have believed in her more, Kate, again, understands. “Unless they’ve had experience of someone who’s recovered from Locked-in syndrome, and they hadn’t, you’re just a blip, a medical blip, I’m still a medical blip”, she says. However, her point is that now she is here to tell what is an absolutely extraordinary tale, perhaps they should exercise slightly more optimism when faced with similar cases. “What they have now is first hand experience, that there are a very small percentage of people that have recovered”, she says. “My doctors will now always say to families to be prepared that 95% of people won’t recover, but that they have experienced an interesting case where she went on to recover – and that would be me. They exercise caution because they don’t want to give false hope, but I’m real, living, breathing hope, and I think this could help others who are recently affected.”

Optimistic or not, however, Kate knows that she owes a hell of a lot to the staff who she began to see as family. And there was one nurse, in particular, whom she formed a special bond with. “Oliver used to come in and chat to me – obviously one way, but banter”, she says. “He knew I loved bands like Coldplay, and he used to come into my room and play them for me in my room.” Another time, just a week after Mark had been told expressly by her speech therapist that she’d never speak again, Kate surprised Oliver by managing his name, and his reaction is to remain with her forever. “Monday morning Oliver came into my room with a box and said ‘morning Kate’, and I said ‘morning Oliver’ – he was so shocked he dropped his box and cried and said ‘its moments like this that I came into nursing’. He rushed to go and get the speech therapist, and said speak – so I said ‘morning Julia’, and she cried as well! From then on they upped my speech therapy and made it more intense.

“I loved Oliver because he treated me like a human being – he’s the sort of bloke you’d go to the pub with”, she says. “I’m still in touch with him, and my physiotherapist, who did everything in the hospital for me – she was brilliant, I can’t give her enough credit. Either way I’m here to tell the tale, so its credit to all of them.”  

Kate met recently with Amanda Jones, head of strokes in Sheffield PCT, and a member of the neurologist team to give over her thoughts in order to ensure that future victims of Locked-in syndrome are given the best possible prognosis. “They loved the idea of a patient advocate, and they loved my list of things to do with someone who’s recently affected by Locked-in syndrome”, she says, referring to the appendix in the new edition of her book, Running Free. “TV is not a luxury in ICU, it is a necessity! It is as important as keeping the patient alive. I couldn’t move a muscle and all I had to focus on was an analogue clock on the wall.

“I should have gone to the normal stroke hospital with the other stroke patients, but I went to rehab instead”, she continues. “That decision was fought by my husband, but the medical profession were totally behind it, which meant that I had exceptional care. I’m now saying with fighting strength if anyone has my symptoms they should be getting this intensive early therapy that I had, because I wouldn’t be here without it – no question. That was the start of my good fortune”, she says. “Post stroke I had amazing therapy and amazing care, and I think there are so many lessons to be learned from the intensiveness I received – people’s views of locked in syndrome can be changed. They couldn’t be more responsive to what we’re doing as a charity”, she adds. “I believe that my progress is the fastest progress that anyone suffering from a stroke has had – worldwide, and they should be saluted for that.”