It started, as with many modern love stories, with a swipe.
In 2015, Paul van Donkelaar, a recently divorced neuroscience professor, met Karen Mason, a woman working with survivors of intimate partner violence.
They started dating and fell in love. To begin with, they were just another couple who happened to have found their happily ever after through online dating. But it soon became clear that there were bigger forces at play.
“We’re definitely unique,” says Karen, who is executive director of Kelowna Women’s Shelter in British Columbia, Canada.
“The fact that the universe decided to put Paul and I together, when I am the executive director of an organisation that provides shelter to women fleeing violence, and he’s a neuroscientist with an expertise in concussion. There’s clearly some universal plan afoot.”
Not long after they began dating she came across an article highlighting an epidemic of traumatic brain injury (TBI) among survivors of intimate partner violence (IPV).
As a professor of neuroscience at the University of British Columbia in Canada, Paul has been researching brain injury in the context of sports concussion for more than 20 years.
But while much has been done to explore the impact of head injuries on athletes, the studies on IPV are still relatively scarce. He started to question why more work wasn’t being done.
“I didn’t have a good answer,” he admits.
One in three women, and one in four men, will experience some form of IPV in their lifetime, according to the US-based National Coalition Against Domestic Violence (NCADV).
In Canada, statistics show that 207,000 women will experience a severe violent episode at the hands of a partner each year.
Of those women who seek help, either from medical professionals, A&E departments or women’s shelters, as many as 90 per cent report symptoms consistent with concussion.
“For every man who suffers a concussion playing the sport they love, 7,000 women suffer the same injury at the hands of the man they love,” Karen announced in her and Paul’s 2017 TEDxTalk ‘Ahead of the Game’.
“I realised that this was something that was probably going on with most of our clients and I insisted that we needed to do something about it,” she says now.
“We know that most physical violence within relationships is based on blows to the head and neck and there’s also the strangulation aspect.
“Most women experience physical blows to the face, head and neck, and strangulation, so brain injury is a natural implication of that.
“The stories we hear are extreme. One woman has spoken about the number of times she was thrown out of a moving car, and the occasions on which he repeatedly smashed her head against the floor.
“It is distressingly common.”
With their individual expertise, Karen and Paul were well placed to make a real difference to these women. In 2016, they launched their project Supporting Survivors of Abuse and Brain Injury through Research (SOAR) – a collaboration between the University of British Columbia and Kelowna Women’s Shelter.
In June 2019, they received a US$1m grant from the Canadian government’s department for Women and Gender Equality, to continue the research for another five years.
The study takes several approaches, both scientific and community-based, to improve the quality of life for survivors of IPV.
“We’re in a position to create some promising practices that may change the way that women’s shelters interact with their clients, the referral network and the way healthcare systems and community-based supporters accommodate and support women who have experienced IPV,” says Paul.
The fact that the government has supported the project so substantially is noteworthy in itself, and shows a recognition and understanding of the desperate need for this research.
“It’s groundbreaking. It’s very important to have direct funding supporting research around this topic, because it could have a huge impact on the quality of life of participants themselves, and in the way practices are done,” Paul adds.
“The goal of this specific funding is to create a blueprint that can be used across Canada, both within the healthcare system, and within community organisations that support women of IPV.
“That’s our ultimate goal.”
Recruiting participants from the Kelowna Women’s Shelter, Paul and his team are measuring physiological changes such as blood flow, to better understand the characteristics of brain injury in survivors.
They are also carrying out assessments for psychological comorbidities such as posttraumatic stress disorder (PTSD), anxiety and substance abuse.
He is using assessments which have proved to be successful over many years of studying concussion in athletes.
Sports related concussions and the link between contact sports and CTE are a growing concern for athletes.
The Centre for Disease Control (CDC) now estimates up to 3.8 million sports related concussions occur every year in the US and more than 100 NFL players have been diagnosed with CTE at the VA-BU-CLF Brain Bank in Boston.
While studying the effect of repetitive impacts to the head in contact and non-contact sports, Paul’s research was among the first to show that certain markers of nerve cell injury were elevated following multiple hits, and that these could be linked to a higher number of concussion-like symptoms such as headaches, dizziness and confusion.
Concussions sustained through IPV, however, are more complex to dissect.
“It’s clear that people who have experienced IPV are very likely to have a brain injury as a result of that, but it’s not like in a sports concussion situation where it happens at a sporting event, there are lots of witnesses and you can very quickly do an assessment and determine that a concussion has taken place,” says Paul.
“In the IPV population quite often it’s months to years before they seek help and so the injuries tend to be remote in time and tend to interact with some of the comorbidities.
“It’s really important to disentangle all of those factors and get a good sense of how much of the challenges they are currently facing are due to the head impacts they have received as a result of their experience.”
The information will then be used to develop tools and training resources for frontline staff and services who come directly into contact with survivors of IPV, to help them provide more effective support.
Frontline workers will also be trained in how to spot the signs and symptoms that someone is suffering from a brain injury, to help them flag up vulnerable women.
Women who may come across as “difficult”, suffer from behavioural issues, memory loss, or struggle to complete basic tasks that would allow them to move forward into a life free from abuse, are actually most likely displaying symptoms of an undiagnosed brain injury.
“For gender-based violence research, this is so critical as it is not something that we have ever taken into account before,” says Karen.
“For those of us who work in the industry, it’s going to play a huge role in creating new support systems when we’re trying to help women be healthy and better.
“If you’re coming to this without any previous knowledge that perhaps there are other factors at play such as a brain injury, your level of empathy and patience, and ability to support that woman is severely diminished.
“We should be approaching every woman we serve based on an understanding that she probably has suffered at least one, if not more, brain injuries.”
This could be as simple as making small adjustments such as interviewing a client in a calming, dimly lit, environment away from other activity, as opposed to a brightly lit, noisy room.
“A simple step like that is very specifically directed at supporting someone who has a brain injury, and is something that frontline workers and shelters could be doing right now,” says Karen.
Their long-term goal is to create a community-based support referral network, bringing various support systems together, from medical care to occupational therapy and speech pathology, so that survivors who may have sustained a brain injury have access to a wealth of support on hand.
Paul is also developing a Concussion Awareness Training Tool (CATT), a web-based utility, originally designed for use in sports concussion.
It has proved hugely successful for educating and increasing awareness of concussion and TBI in the sports industry, and it is hoped it can do the same for those working with survivors of IPV.
“The idea is to create a new module of the CATT online, specifically for those working in the IPV sector, with the goal of increasing awareness of TBI in the population and then disseminating that as widely as possible,” he says.
“We hope to have that up and running and in place by next year.”
In the meantime, SOAR is already beginning to see results on the ground, with Kelowna Women’s Shelter leading the way.
“It’s the thing that is in mind for staff whenever they do an intake with a new client, or whenever they are dealing with a particularly challenging client,” says Karen.
“Five years ago that wasn’t the case, so we’re definitely seeing change.
“I know other shelters are now thinking about brain injury and I’ve had executive directors from other shelters tell me that it has changed the way they approach their clients.”
But it’s the survivors of IPV themselves who have seen most of the impact.
The fact that someone wants to listen and acknowledge their experience has given them a sense of empowerment.
“For women experiencing IPV this is their normal,” Karen explains.
“It might be normal to wake up and be dizzy because of the physical fight they had with their partner last night, or forget things all the time and he tells her she is just stupid.
“She internalises all those messages and it might never cross her mind that she actually has a physical condition that is a direct result of how her partner treats her.
“We’ve had women go through this process and almost have a sense of empowerment at the end, because they feel like they have a label for this, that it’s not their fault, and maybe there are things that can be done to help them.”
And ultimately, that is what the project is all about.
“The reality is, women make up more than half the population, and at least a third of them, statistically, will be in this situation.
“Many, if not most of them, will see some sort of impact to the head and possibly a brain injury,” says Karen.
“Brain injury can be a hidden injury and IPV is also often an invisible problem.
“In 2019, we’re still dealing with some of that shame and stigma, it’s still an issue that many people prefer to pretend doesn’t happen.”
Paul and Karen are not those people.
They are committed to increasing research into the impact of concussion beyond what might be seen in athletes, says Paul: “We know helping them achieve a healthy life, free from abuse, is good for all of us.”
It’s a good job then, that they both swiped right.
Drake Foundation: ‘Research can protect players and enable change’
CEO Lauren Pulling tells NR Times of the Foundation’s commitment to protecting player welfare through better understanding the impact of injury
As one of the first organisations to recognise and react to the urgent need to address head injury in sport, The Drake Foundation has become a central player in the fast-developing debate over how to best protect players at all levels from the devastating later-life impact of neurodegenerative disease.
Established by philanthropist James Drake in 2014, in the wake of an injury to then-Tottenham Hotspur goalkeeper Hugo Lloris during which he was knocked unconscious during a match but was allowed to carry in playing, the organisation is committed to delivering the research which will hold the key to making change.
The Foundation has been behind some of the most significant research projects to date in uncovering the impact of head injury in sport, including the Drake Rugby Biomarker Study, the first of its kind to make use of advanced neuroimaging.
The landmark BRAIN and HEADING projects – which investigate the impact of concussion in former players aged 50 and over in rugby and football respectively – are both helping to shed new light on links to neurodegenerative disease.
Over £2million has already been invested in research by the Foundation, which describes itself as being at the intersection between sports, science and society, to not only improve sports player welfare but also to advance knowledge and understanding of the brain and brain diseases in sport and across society as a whole.
Further pioneering projects are now underway, including one with retired rugby players from the pre-professional era, the findings of which could help shape the adaptations needed to properly protect players in the game in its current form.
And the need for such research is vital in helping to understand what happens in players’ brains so action can be taken to protect current and future players, says Lauren Pulling, CEO of The Drake Foundation.
“Over the last couple of years we’ve really seen the conversation on this topic shift and more people are now invested in it, it’s not just a concern for retired players who were playing decades ago, it’s a very real concern for everyone whether they’re a youth player now, whether they’ve recently retired from elite sport or whether they’re an amateur player,” she tells NR Times.
“It’s now become a conversation everyone is involved in so it’s really critical we have more research and ongoing research in this area to really pinpoint exactly what is happening in the brain, but alongside that so that sports governing bodies can take real action as well.
“While it’s going to take a while to build the full picture of what’s happening in the brain, we need to be making significant changes to pre-emptively and universally reduce players’ exposure to head impacts.
“When you know more what the actual cause is you can target that, which will help governing bodies with any protocol changes to make sport safer.”
Already, the Foundation’s research has produced some worrying findings, with its Rugby Biomarker Study revealing that almost a quarter – 23 per cent – of current rugby players sampled had abnormalities in white matter of vasculature of their brain.
While some moves are being made to tackle the issue of player safety, based on the research that exists to date – including the limit on full-contact training in rugby and restriction on high-force heading in football training – the Foundation is keen to see more action taken, backed by enforceable laws from governing bodies.
“I think for players to feel safe and youth players going into the game to feel safe, there need to be universal enforced law changes that minimise their cumulative exposure to head impacts, not just in the game but in training as well,” says Lauren.
“We want to see more from sports governing bodies. We’re really pleased to see recent changes to guidelines like the limit on full contact training in rugby and guidance to reduce heading in football in training in particular – but we’d question whether it could go even further.
“I think we need to stop being tentative and go for enforced law changes rather than guidance.”
The need for such action is becoming ever-more apparent, with players of all levels speaking out about their concerns around participation.
“We did some market research at the beginning of this year with amateur players and the parents of youth players in both football and rugby, the results of that were really concerning,” says Lauren.
“Two thirds of parents and amateur rugby players were concerned about the long-term impact of the sport on their brain health around half of parents and players in football wanted to see a reduction in heading.
“Seeing that people are that concerned, and that’s what the attitude is not just in elite sport but in the amateur grassroots game, that tell us action needs to be taken before not just more players are affected, but also for the future of the game.
“If people are dropping out then what does the future of sport look like? So I think we need to make some big changes to protect the players and the game so we don’t see another generation of this happening.”
In addition to its ongoing research, the Foundation also sees collaboration as being key to change being made around head injury in sport. Its symposium meeting brings together researchers, sports governing bodies, medical experts and other stakeholders in the debate to continue to drive the issue forward.
“There’s definitely a shift to everyone moving towards the same direction now, what we’re doing with our symposium is trying to unite that even more,” says Lauren.
“With COVID it’s been tricky to get everyone in a room and talk about the direction we’re going in, but with our symposium this year there will be a renewed focus on everyone going in the same direction, taking a united approach to tackling this issue.
“I think there’s likely more that could be done and that’s something that we are always on the lookout for. I think it will be interesting to see in light of the Government inquiry the effect that will have on uniting all the stakeholders in this field.”
Going forward, in addition to the research and collaboration, technology is playing in increasingly central role in the issue. In addition to the advanced neuroimaging which is helping The Drake Foundation in its research, innovations including a mouthguard with a sensor which can deliver real-time information to medical teams on the sidelines, are helping to provide quantifiable statistics which will help to inform research further still.
“Technology has a huge role to play in it all, in the seven years The Drake Foundation has been in this field, technology has advanced hugely,” says Lauren.
“The advanced neuroimaging that was used in the Drake Rugby Biomarker Study wasn’t part of the original proposal for that study nearly seven years ago, it has been brought along as the study progressed and I think that could turn into a really valuable tool, looking at changes to microstructures to the brain that can’t be picked up by standard MRI.
“What we don’t know at the moment are the long-term changes to white matter or vasculature so that will be a really interesting one to follow over the next few years, there is no short cut there so we need longitudinal studies using advanced neuroimaging.
“And on the sensor side, I think big data has done a lot, not just in this field but in science and medicine, so I think the more data we can gather can only be a good thing.
“What is important is how the data is then used whether it’s all put into one big data set, can we use that as a common data set, is the data comparable across different studies and sports, that will be an interesting one to see over the coming years.”
Emilia Clarke’s SameYou – a catalyst for change
Tackling the vital issues of the lack of neurorehabilitation provision and the ongoing stigma around brain injury, SameYou was founded by globally-famous actor Emilia Clarke to fight the corner and provide a voice for survivors who feel they are forgotten. NR Times speaks with Emilia’s mum Jenny Clarke, CEO of SameYou, about the charity’s brave campaigning and funding of research which is making waves on a global scale
As the CEO of the charity SameYou committed to making a difference to the lives of people living with brain injury, as well as being the mother of survivor Emilia Clarke, and a patient herself, Jenny Clarke truly understands the impact of acquired brain injury.
In a twist of fate, like her daughter Emilia, Jenny also has two mirror aneurysms in her brain. While Emilia almost died twice, mercifully Jenny did not experience such traumatic illness – yet its impact it still life-changing.
“It’s familial, apparently. It was a complete fluke that I found out, really,” says Jenny.
“I went for an MRI scan, and they said, ‘You’re fine, but did you know you have two aneurysms?’ It was a shock.
“So I do understand what it’s like to have that diagnosis, especially after what happened to Emilia.”
Emilia’s story is, of course, now well documented. Globally-famous Emilia, best known as Daenerys Targaryen from Game of Thrones, had the first of two brain haemorrhages in 2011, just after she had finished filming season one of the iconic series.
The Emmy-nominated actor and her family continue to be indebted to the National Hospital for Neurology and Neuroscience (NHNN) Queen Square in London, which they credit with saving Emilia’s life.
Emilia has since become an ambassador for the Royal College of Nursing and Nursing Now, after the hugely positive impact of nursing care during her time in Queen Square; indeed, her relationship with her nurse at NHNN continues to this day.
Her second haemorrhage, in a hospital in New York two years later, was caused when a preventative procedure failed.
Six years later, in 2019, having been shocked at the lack of focus on brain injury and its seismic impact – and the stigma that continues to persist in speaking out, despite the fact one in three people sustain brain injury during their lives – Emilia took the brave decision to share her story for the first time, to help inspire others who sustain brain injury and are forced to live with its effects.
“We realised we had to do something because she has a global platform. It took a long time to tell her story, it is very, very difficult to talk about. There is stigma and shame attached to it, people don’t know what to say, there is no common language,” says Jenny.
“Shockingly, brain injury is the biggest problem in the neurological world, it’s bigger than dementia – but who is saying anything about it?
“Emilia had no idea (anything was wrong) before her first aneurysm, we had no history of stroke in the family, there was no warning. She was going through this tremendous transition with Game of Thrones when she nearly lost her life.
“Then two years later, she came even closer to losing her life when her preventative treatment for her aneurysm went wrong, which I think highlighted how fragile the brain is. But she was lucky, being young and very fit, she survived, and has learnt to manage her residual fatigue, but our family knows how hard it is to cope with the impact of a sudden brain injury.
“This whole experience made us realise how very different things could have been.”
Committed to changing the situation, Emilia established SameYou, a UK and USA registered charity which tackles the issue of the lack of neurorehabilitation and stressing the need for holistic and ongoing care and support once an ABI survivor leaves hospital.
Building on Emilia’s profile and personal experience, alongside Jenny’s expertise in business, the charity is already making waves around the world. With a website – sameyou.org – bustling with signposting information through its UK Neuro Recovery Directory, advice from leading experts and inspirational video content, survivors can find a host of resources on a daily basis, while knowing SameYou is fighting hard on their behalf in the background to bring about change.
SameYou is also collaborating with global partners to find and test new treatments, with a number of exciting projects already underway.
“With brain injury, you’re the same person inside even if your brain doesn’t let you appear that way. But you’re the same you,” says Jenny.
“We decided the biggest gap we could see was in rehabilitation, there is next to nothing. If you’re severely injured, or have a TBI or stroke, then you can get up to 12 weeks of rehabilitation in the UK it’s similar in the States, but resources are so scarce.
“The accessibility of neurorehabilitation at the moment is completely inequitable. If you’re lucky enough to be referred to Queen Square, then lucky enough to get in, then you have access to this fantastic care – but when you have a brain injury, it does alter the way you live your life. Often, people have no hope and thousands of survivors tell us they feel abandoned.
“We want to put all our energy into this to make sure people get access to the resources and support that will help them recover.”
The scale of the task ahead is something Jenny and the SameYou team continue to be shocked by but determined to make a positive difference – “We are certainly punching above our weight as a small startup, but believe that partnerships to deliver change will make the most impact on survivors and their families,” says Jenny.
“The only positive thing I can say about COVID is this new consciousness is that people are realising hat recovery care is essential. Everyone understands the need for research, and the fantastic advances in acute care, but recovery is not prioritised,” says Jenny.
“Successive Governments around the world have ignored it, social services can’t provide it. We want to make as loud a noise as possible to represent the voices of brain injury and stroke survivors and their carers.
“When I was a child, my grandmother and aunt had cancer and that was almost shameful – but look at how we regard cancer now. It shows the great strides we have made in that area, and I see that we are at the start of making that change with brain injury.
“I do feel that there are so many people who want to make a difference – and who are doing great work, but our impact is reduced without collaboration.”
And through such collaboration, SameYou is already making its mark.
One area it is particularly passionate about is nursing care and in partnership with the RCN Foundation and the University of Edinburgh has developed the landmark Advanced Practice Neurological Rehabilitation Education Programme, to enable better care for young people recovering from brain injury and stroke.
“When the brilliant neurosurgeons have saved your life, you don’t get to see them often and the continuity of care is delivered by nurses. If you have a specialist nurse who combines her clinical experience with care and compassionate that makes all the difference,” says Jenny.
“Nurses can give confidence, strength and reassurance.
“We still keep in touch with Tina, Emilia’s nurse at Queen Square. If Emilia is in LA, she will phone with any questions she has and get those answers from Tina, which shows the level of bonding and trust.
“Through our work, we want to help create holistic rehabilitation, which we describe as being for ‘brain, body and mind’. We aren’t ashamed about using non clinical language because that’s how survivors think about it.
“Every person with brain injury wants to be treated as a whole person so motor, cognitive and emotional support is essential for the best possible recovery.”
Another initiative is to support and popularise the use of telerehabilitation for brain injury, through its work with N-ROL. Having initially been piloted at UCL, N-ROL aims to reduce social isolation and improve self-efficacy for ongoing post-stroke recovery by providing high quality, group-based online neurorehabilitation to patients denied conventional therapy due to COVID-19.
It is now being rolled out into East Lancashire Hospitals NHS Trust, working alongside the University of Central Lancashire.
“Technology is so important, and telerehabilitation has to be an essential part of the recovery pathway,” says Jenny. SameYou is partnering with Visionable, a pioneering healthcare techniology company who are using their advances to improve the stroke and brain injury pathways.
“We believe strongly that telerehabilitation gives rehabilitation people would not get otherwise. Hospitals can only see a limited number of patients a year, outpatient rehab numbers are so limited, so we see the role telerehabilitation can play.
“Like with UCL, East Lancashire are committed to neurorehabilitation. We funded a pilot there and are trying to find the money to broaden that to other Trusts in their area.”
While the pandemic has delayed one of its most eagerly awaited initiatives, the three-year project with Spaulding Hospital in the United States – which explores the interplay between physical, mental and social challenges of brain injury survivors – happily it is now set to get underway.
“We recruited the cohort and then COVID came, but the project is now starting,” says Jenny.
“We are looking at young adults’ resilience after brain injury, it is biopsychosocial research. One of the lovely things is that a lot of the team are young investigators, brilliant and very qualified to understand the issues.”
With great progress already being made for the startup charity, its mission to truly make brain injury more accepted, with more resource channeled into care provision, is one that will only grow.
“We have a long way to go,” says Jenny.
“With cancer for instance, you can ‘box’ it, whether it’s in the breast or the bowel for example, but when your brain is injured there is the sense that your brain has let all of you down.
“When you have a head trauma, people often tell us they think it’s their fault, any sort of brain injury is shockingly sudden and totally unexpected so there is no time to prepare yourself.
“With endovascular coiling, which is used to treat an aneurysm, it’s a procedure which I found out uses technology that started 20 years ago. Every minute we’re getting new upgrades and updates on your phone – why not here?
“We are a catalyst for change and are convening the most innovative minds in neuroscience, technology and neurorehabilitation to collaborate and put survivors at the heart of change and make a positive change.
“That’s what we want to do – play our part in making brain injury recovery better.”
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