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.
The couples therapist who rehabilitates love after brain injury
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.
The light and shade of brain injury recovery
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.”
Scottish MP talks rehab, criminal justice and out-of-work assessments
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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