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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…

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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 o 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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Interviews

The couples therapist who rehabilitates love after brain injury

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Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.

“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.

“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.

“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”

But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.

Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.

“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.

“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.

Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.

“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.

“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”

It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.

“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”

Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.

“There are unique challenges here to consider, but accessing the right type of support is difficult.”

Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.

“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.

“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.

Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.

“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.

“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”

When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.

“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”

Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.

“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”

But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.

“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”

Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.

Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.

“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”

But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.

“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”

Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.

 

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Interviews

The light and shade of brain injury recovery

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When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…

Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.

Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.

“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.

Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.

“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.

“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”

Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.

“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.

“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”

The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.

Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.

She says the name of the book came from several inspirations.

“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.

“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”

 

Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.

“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.

“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.

“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”

“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”

Eates was also surprised to see such a positive atmosphere in Headway’s studio.

“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”

Eates is looking forward to the members seeing their work in the final book.

“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.

“It will be interesting for them to see how their artwork and their stories have inspired others.”

 

 

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Interviews

Scottish MP talks rehab, criminal justice and out-of-work assessments

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Interior of Scottish Parliament Building in Edinburgh

NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.

Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.

“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.

“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”

Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.

“I became aware from a personal point of view that these issues are often overlooked,” she says.

“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”

Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.

She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.

“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.

“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”

Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.

The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.

“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.

Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.

In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.

“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.

“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”

However, the service does get some referrals from the NHS to reduce patients’ waiting times.

“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.

Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.

“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.

But Cameron has found this isn’t unique to parliament.

“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.

“This is a huge issue that needs to be addressed within criminal justice.”

Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.

When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.

“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”

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