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“Blows to the head, thrown from moving cars, strangled – it’s depressingly common”

A neuroscientist and a women’s shelter are working together to save domestic violence survivors through brain injury research. And it all started on Tinder…

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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.”

Paul van Donkelaar and Karen Mason.

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.

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Interviews

‘I lived in pain for so long – finally I’ve found a way to manage it’ 

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Despite a cycling accident, Ian has managed to get his life back

Having been left with serious injuries in a cycling accident, Ian recovered from the physical impact but continued to suffer chronic pain. Here, he discusses how he has learnt to deal with it and get his life back on track.

“About two years ago, I was involved in quite a serious accident while I was out on my bike. I flew over handlebars and hit my head on the ground, leaving me unconscious.

I was left with an array of injuries, including decompression of two of the disks in my spine, which needed an operation to resolve. But from being in the ambulance after my accident – the earliest point I can remember after coming off my bike – I was in enormous pain.

While over time I have managed to recover my body functions, having struggled in the aftermath of the accident, I continued to experience pain. Most days were pretty tough. I was on a lot of medication, which contributed to my fatigue.

I was sleeping a lot, spending a lot of time in bed, I was very tired all of the time and in a lot of discomfort.

I’d always been very, very active, and enjoyed cycling, motorcycling, tennis, walks with friends and family, I was a very outdoors person – but that all came to a halt. The most I could manage was a short walk, and even then I was very fatigued.

I didn’t understand what was happening to me or why, it was just continuous, unrelenting pain.

By this point I had returned to work and the demands of my job. I was just about managing to keep on top of my commitments, but only just.

With a wife and two young daughters, my life had typically been very busy and very active, but now I was unable to do as much together, or spend as much time as I’d like with them.

This went on for over a year, and was, without doubt, the toughest time of my life.

My case manager helped me to find a solution which has enabled me to rediscover my life, through a programme called RESTORE, pioneered by RTW Plus. 

Through RESTORE, an online learning programme which supports you to understand and manage pain, and take back control of your body and life – which enables access to a consultant and support from health coaches 24/7 – I have been educated in what I can do to help myself.

All of a sudden, from not knowing what had happened to me and feeling helpless, I was supported in understanding what was going on.

Prior to that, what had happened wasn’t described to me that well, and I had so much medication that everything was often quite blurry. The concept of chronic pain wasn’t something that was addressed once my physical injuries had healed.

Through this programme, I was educated as to what had happened to me. As a keen cyclist, I’d had many accidents in the past, but all were short-term tissue damage, which were very painful at the time, but that pain went away. I now was able to understand why this time was different, and to be realistic in my expectations.

I’ve never been good at pacing myself, but now I was able to stop and think what it was I was trying to do, what I wanted to do, and how to manage and achieve that.

Crucially, by understanding my pain, I became less frustrated and less dependent on medication, meaning my life would not always have to be a cloudy blur. I became more confident as a result.

From believing this was how my life was going to be, not very pleasant and full of pain, now I had hope and confidence it was going to get better. There was light at the end of the tunnel.

Understanding more about pain got me really engaged, and I started reading about it and looking for examples. After work, I’d be picking up books and learning more. Having the knowledge about what is happening to you, and how to help yourself, is so powerful.

Having been able to come to terms with my pain during the 16-week course – it’s usually eight weeks, but was tailored around my busy work schedule – I could then get my life back on track, backed by the confidence I had rediscovered.

I’m now cycling every other day, which I haven’t done since my accident, and am getting my life back to what it used to be. I’m doing things that matter and spending time with my family, which is what it’s all about.

I realise I am on an ongoing journey with my pain, and that hasn’t finished and will continue for some time to come, but I’m in a good place now – a place I could never have imagined being a few months ago.”

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‘I lost my sense of smell through brain injury – I’m grateful COVID has shone a light on its impact’

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Smell loss if one of the long-lasting symptoms of COVID-19

Having been in a near-fatal car accident, Sally Smith has recovered physically, but a brain injury resulted in the permanent loss of smell. Here, she discusses how the once-tricky subject has now become much more accessible through its association with COVID-19.

I used to love the smell of Christmas. I honestly think that was my favourite part. The mulled wine, the spicy fragrances, the turkey dinner cooking – that really made Christmas for me.

However, for the past five years, I’ve had to live without this, after losing my sense of smell as a result of my brain injury. As 80 per cent of the flavour of food comes from its smell, my sense of taste has also been seriously impacted.

It has been a pretty life-changing experience, one which I could never have appreciated the impact of. Christmas certainly isn’t the same, but neither is any other day.

The smells of summer – the cut grass, the flowers, the barbecues – all lost. The overpowering sensation of walking through the perfume departments of stores is something I can only remember. Even the smell of burning to alert me to the fact I’ve left the dinner in the oven too long is gone forever. And the taste of my favourite foods and wine is also tainted, with a flavour so faint often I wonder what is the point.

While people are sympathetic, they don’t understand. But how could they? I’m not sure I could have prior to my own experience.

Often, their sympathies extend to something like ‘Well at least you’ve still got your hearing/sight’ as if it’s some competition between the senses. Or ‘At least you’re still alive,’ which is quite dramatic, but nevertheless true.

I did come close to losing my life in a car accident five years ago. As a back seat passenger, I bore the brunt of a lorry crashing into the back of the vehicle I was in, and suffered a range of injuries, my brain injury being the one which still affects me now and always will.

I was undoubtedly lucky, apparently it was miraculous I survived, and I do feel so fortunate to have few other lasting affects apart from my loss of smell.

The topic was one that there were few opportunities to talk about, as devastating as it was personally for me, given the fact that so few people had experienced it for themselves.

Until a few months ago, that is, and the fact that loss of smell become a symptom of COVID-19. Suddenly, it stopped being a subject that was just plain weird, and one that everyone was talking about. People began to understand.

My next door neighbour had COVID-19 and lost her sense of smell for a short period. ‘It was only at that point I realised how horrendous it is,’ she said to me after her recovery. ‘Who knew I’d actually miss the smell of my daughter’s dirty nappy?’

And while that’s perhaps not something you’d ever think you’d miss, when you find yourself in the situation of not being able to smell anything at all, however divine or revolting, you do feel a great sense of loss. Of wishing to smell anything at all.

Thankfully, for most people with COVID-19, this is a temporary state, but I have heard there could be more than 100,000 of those recovering from this terrible virus whose loss of smell has extended beyond four weeks. I can only hope this is not a permanent state for them, although undoubtedly there is much more about COVID-19 and its lasting impact we have yet to discover.

For me, my situation is permanent, and living in a world with no fragrance is the reality. Yes, things could be much worse, and I realise that, but for me, it has been life-changing.

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Interviews

Inspiring a brighter future for residents

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A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.

Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.

The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.

A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.

Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.

Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.

Michelle Kudhail, director of clinical excellence at Inspire Neurocare.

She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.

“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.

“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.

“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.

“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.

“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”

Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.

Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.

“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”

Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.

The rest of the clinical team have a wealth of experience within neuro services in and around the region.

The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.

She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.

“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”

Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.

With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.

In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.

The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.

As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.

After each visit, the room is cleaned and decontaminated in preparation for the next visit.

As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.

“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”

And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.

She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.

“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.

“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”

The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.

By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.

Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.

One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.

(See Adrian’s story below – and read more here).

While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.

www.inspireneurocare.co.uk

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