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Locked-in syndrome: Escaping the abyss

Locked-in syndrome threw Kate Allatt into her own horror movie with nobody to hear her scream. She escaped with a plan to save others from the same hellish world, and is doing a great job so far…



A wine-soaked conversation with her husband may well have saved Kate Allatt’s life.

Shortly before the neurological catastrophe that almost left her three young children without a mother, they’d been pondering the ‘what ifs’ of marriage.

“Even if I couldn’t wipe my own backside I’d want to be kept alive,” Kate told her husband over drinks at her sister-in-law’s house in Bolton.

Two weeks later, with Kate locked in her own body, unable to move or communicate in any way, he remembered their discussion.

And, despite being told by one healthcare professional that she’d be better off dead, he and Kate’s family and friends committed to making sure she had enough time to escape her newfound prison.

Today Kate is a marathon-running, tub-thumping reminder that locked-in syndrome (LIS) can have a happy ending.

She travels the world reassuring and motivating early-stage LIS patients and, with a published memoir under her belt, also campaigns for changes to the way
 the condition is managed by healthcare authorities.

With the caveat that she is eternally grateful to the staff and specialists who kept her alive, she believes her own case, and many others around the world, highlight the need for improvements to
the way LIS is handled.

At the lowest point of her own experience, she recalls: “I was able to hear everything around me very easily but I just couldn’t communicate. I had hallucinations, I heard and saw things I didn’t want to see and was terri ed. What if they thought I wasn’t worth keeping and decided to pull the plug?”

It was a severe brain stem stroke that put Kate in this position at 39. She’d visited hospital, concerned about her week-long headache, and other unusual symptoms for a super-fit, 70-mile-a-week fell runner.

But despite slurring her words as she spoke to the doctor, she was sent home with apparent migraine and a prescription for co-codamol.

The stroke, five hours later, was like “an explosion of the brain”. A medically induced coma followed, before two weeks with LIS and zero movement and then gradual progress from blinking for ‘yes’ and ‘no’ to walking out of hospital five months after the stroke.

Among the horrors of early-stage LIS, which Kate wishes to impress on loved ones and carers of patients with the condition, is overhearing conversations that destroy hope.

“In one well known case, a family were discussing which of the man’s organs they were going to donate. He was there listening and went on to make a full recovery.

“Nothing as bad as that happened to me but there were conversations around my bedside completely about me and my outcome.”

In another case, a male LIS patient’s room had become an unofficial staff room for ward staff. Their trivial chatter over several months eventually inspired him to find movement he needed to tell them to shut up.

“It’s a terrible symptom of society that you’re invisible in a wheel chair or hospital bed.

“Those first couple of weeks felt like a lifetime for me. People were talking around my bedside but not giving me any eye contact. That carried on even when I was able communicate. Staff would do their tasks without looking me in the eye.”

Kate believes, given the misdiagnosis rates of prolonged disorders of consciousness (PDOC), all LIS patients should be communicated with directly, with an assumption that they understand.

A 2015 study by the University of Western Ontario suggests a fifth of patients diagnosed as being in a permanent vegetative state showed responsive brain activity via a brain scan.

Some studies put this proportion at 43 per cent. While PDOC diagnosis is moving towards MRI technology, currently it is dominated by behavioural analysis.

This presents obvious challenges in LIS cases. Kate’s aversion to the word ‘plateau’ signposts another failing she sees in current LIS and post-stroke treatment.

“The word should be banned as it’s so damaging in rehab. There is never a stroke survivor that doesn’t improve. Whether it’s fast, slow or almost indifferent, they can always make some positive improvement.”

‘Plateau’ is indicative of a general desire among ward professionals to lower expectations rather than creating false hope, says Kate.

“It’s a justification to stop allocating costs and resources to someone, not a reflection of how much more of an improvement they can make. The patients and their families don’t get that. They just hear the word and think that’s the best things are going to get and that can destroy lives.

“Negative language is often used because doctors don’t want to in ate hope. But in using it, they crush all hope. When you
 have families that may be dysfunctional or distant being told that this is the best the situation is going to get from a white coat who supposedly knows what they are talking about, they won’t need much persuasion to pull the plug.

“Of course, there’s me at one end of the spectrum and, at the other, someone
like Tony Nicklinson [a LIS patient who unsuccessfully fought at the High Court to end his life, before passing away in 2012].

“Two different people with injury in the
same part of the brain can have very different outcomes and it can be horrific.
 But nobody knows where an early-stage LIS patient might end up on that scale in six months to a year.

“So often, the message in intensive care and early rehab is that, if you haven’t made significant improvement by six or 10 weeks, then you’re going to have a lousy prognosis. If the patient hasn’t changed after a few weeks they might end up in a nursing home.”

This overbearing pressure to improve came to a head for Kate in a demoralising but strangely inspiring meeting in hospital.

“I had been in intensive care for nine weeks and all I had was a bit of head movement. I had a review with all my family, including my mum, as well as the nurses, the occupational and speech and language therapists and a neuropsychologist. I was in a wheelchair in the corner dribbling.

“The rehab consultant opened the meeting and said ‘thanks for coming, I’ve nothing to add’. Then the next person and the person after that both said ‘no change’. Another said we needed to discuss my discharge to a nursing home.

“I was devastated and spelled out to my friend ‘stand by me’. That was when I decided to prove them all wrong. I channelled my anger positively – I wanted to be with my kids, not visited by them once a week in a nursing home.”

She began an obsessive focus on achieving the slightest movement, with toughness from her running days coming into play.

“Every waking minute of every day I was trying to push my finger by a few millimetres. Then I’d be pushing the next one. Next I’d be staring at my toes, saying to myself ‘move damn you’.”

The rest is well documented in Kate’s book Running Free and – unsurprisingly for a digital marketer by trade – on YouTube and various other social media platforms.

Having spent six years meeting LIS patients and affected families, Kate believes there is a disproportionate lack of research on
the condition.

This and obvious budgetary challenges, are the root causes of low expectations and the limited amount of time patients are afforded in which to show signs of improvement.

“Cost pressures have a hand in the premature nature of decisions about care and whether or not rehab is offered. What I really find disturbing, however, are the numbers
of families who are told that the statistics aren’t good for their loved one.

“That might be true in a sense – but there aren’t many statistics. So when you drill down and ask the doctor how many cases they have personally come across, it may be one a year; or, as I discovered recently in Cumbria, the last one might have been a decade ago. What makes them an expert?”

Further research into LIS is clearly hampered by a scarcity of funding, especially when bids are up against studies into more common diseases and conditions.

A more immediate measure, says Kate, would be to look beyond age and medical history during a patient’s battle with LIS.

“A patient’s lifestyle, family and commitments should also be factored into the prognosis.
As well as stats, we need to build a more detailed picture of the patient before decisions are made.

“Their past and background could determine how we motivate the individual and overcome barriers.

“For example, I had three young children – possibly the biggest motivator you could have. I was extremely t and had an obsessive personality. But none of that was factored into my prognosis.”

For those patients that make it to rehab and escape the life support machine, as Kate did, further problems invariably await.

“In rehab I think there needs to be more education of family and close friends at the time of discharge about how the brain injury might have affected the patient.

Dealing with the emotional side of my stroke has been my biggest challenge.

“I’ve had to battle to educate my family about fatigue, or why I’m irritable, can’t process things or can’t sleep.

“Doing this while also trying to get better is a real struggle. When you’re discharged there’s an assumption that you’re fine and there’s so much more that doesn’t get said because we tend to treat the brain injury itself rather than the person holistically.”

Although she recognises that many clinicians may deem it a wishy-washy concept, Kate says belief is also in short supply at the LIS patient’s bedside.

“I use video evidence to get past the scepticism about the belief factor,” she says. “When I visit LIS patients I hold their hand and say ‘I’m not a doctor or a therapist, I’m just someone who had what you have’. I tell them they are in for the fight of their life
but that they’ve got the most amazing team around them.

“I say ‘I’m at the end of the spectrum and here’s the other end. We don’t know where you’re going to end up but if you do things repetitively, intensively and work damn hard, and you get the opportunity for rehab, you will increase your chances of improvement’.”

Kate cites numerous examples like that of 24-year-old LIS patient Klaudia, in Poland, who developed the new ability to rotate her hand 10 hours after one of Kate’s bedside
pep talks.

“Healthcare authorities have become more receptive to [my visits] and they know I’m
not there to raise expectations, but to offer help and support; and I have seen phenomenal changes,” she says.

See Kate’s video evidence of her LIS work on kateallatt.com.

How technology is giving a voice to locked-in patients

Brain computer interfaces (BCIs) could hold the key to setting locked-in syndrome patients free.

Or at least, they could allay the torture of being able to think, see and hear – but unable to tell anyone their mind is still active.

A study earlier this year at the Wyss Center in Switzerland 
used a BCI system to read the thoughts of four patients and empower them to answer yes- or-no questions.

All the patients in the study were “completely locked in” and could not even move their eyes.

The research tapped into the
way in which brain cells affect blood oxygen levels, which then alters blood colour.

Scientists used near-infrared spectroscopy to detect blood colour in the brain, while computer technology was ‘trained’ to interpret brain signals associated with yes-or-no answers. e system was 75 per cent accurate – meaning questions had to be asked repeatedly to gain certainty of
a patient’s answer.

Prof Ujwal Chaudhary told the media: “It makes a great difference to their quality of life.
Imagine if you had no means
of communicating and then you could say yes or no – it makes a huge impact.”

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