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.
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.”
Patient story: “Covid wasn’t as scary for me as the after-effects were.”
‘We can change the reality for so many survivors’
Through the use of AI-powered technology, BrainQ is set to revolutionise the potential for stroke patients in their recovery from disability and lasting effects of their condition. NR Times speaks to co-founder and CEO Yotam Drechsler about the life-changing potential of its electromagnetic field therapy
In just a few years from now, the potential for stroke patients to reduce and even reverse disabilities could be reality.
Through the groundbreaking work of BrainQ, whose AI-powered electromagnetic field therapy is revolutionising traditional recovery prospects, the outcomes for people who have had a stroke could be unrecognisable against today’s reality.
Results from its pilot trial are undeniably exciting – after receiving BrainQ therapy, 77 per cent of patients had either no symptoms or minor symptoms, with no significant disability, scoring one or even zero on the modified Rankin Scale (mRS), the gold standard for measuring global disability.
Additionally, over 90 per cent of people improved by two or more mRS points through the use of BrainQ’s technology.
Crucially, in addition to such impressive statistics on the reversal of disability, the window of opportunity for intervention post-stroke can be extended by BrainQ from hours into weeks.
Having been awarded FDA Breakthrough Device status in the United States, a multi-centre pivotal study is now planned, ahead of FDA approval, with the company recently announcing that $40million has been raised to help progress this.
Under current timescales, BrainQ is aiming to bring its technology to market within the next few years in the US, with roll-out across the world, including to the UK, planned for the coming years – and the potential to expand into tackling other neurological conditions also in the planning.
While Israeli-based BrainQ is now one of the most eagerly-anticipated launches in neurorehab, its road to this point has been long. Inspired by co-founder and chief innovation officer Dr Yaron Segal’s son Lear, who lives with familial dysautonomia, the creation of BrainQ stems from his father’s determination to find a solution to tackle his condition at its core, not just treat his symptoms.
“You need an extra reason to do something against all odds,” says CEO Yotam Drechsler, who co-founded BrainQ with Dr Segal.
“Yaron was on a mission to care for his own son, and when you have such a mission, you cannot accept no for an answer.
“He has been on an almost 20-year journey, but now we will be able to change the reality for so many people.”
Working at the forefront of tech innovation globally, BrainQ’s therapy works by using a cloud-based platform to map brain network activity using machine learning algorithms to extract biological insights that translate into precision therapies.
The therapies – pioneered by BrainQ’s team of experts in AI, data science, machine learning, neurology and neuroscience – are delivered through a non-invasive wearable medical device that creates a frequency-tuned, low-intensity electromagnetic field.
Following the concept and development stage, its work elevated to the next level when BrainQ decided the time was right to take it into the human testing phase, which culminated in its pilot trial for ischemic stroke.
“When we opened the envelope and we saw the results, we realised this was a big breakthrough. It was really astonishing, it wasn’t just the potential to expedite recovery, it was two times the effect of the normal course of recovery,” says Yotam.
“We realise the potential of the stroke market right now. The vast majority of stroke care within preventative therapies is administered within the first few hours following a stroke. Only about five per cent of patients can receive this treatment, as there is a limited window of opportunity of six hours.
“But if you think about it, to recover that damage you need to reverse it, so we set out to do that, as well as to increase the size of the window of opportunity. So instead of talking hours, we aim to make that into weeks. So for us, the six hours and five per cent is now two weeks and a potential of applicability of 40 per cent.
“In terms of scale, this is a huge opportunity for people who have had a stroke and for us, and this is the main focus we plan to lead.”
Determined to set itself apart from the many other entrants to the market, BrainQ has been eager to put its technology to the test and to independently verify its claims.
“With a lot of technology, everything looks good in the first minute but does it really work? The standards are so high to get to the pre-clinical stage, and many will fail to address this,” says Yotam.
“The technology may be very much attractive, but that’s not enough. Most technology therapies don’t test to the highest criteria.
“BrainQ has got a safety profile, there are no related adverse effects. It is below the threshold for exposure, so the transition from pre-clinical to clinical stage is an easy one from the risk side.
“It has been designed to the highest standards after so much study, we have worked with some of the very best doctors and drove ourselves hard.”
Now, as the business works towards its goal of commercialisation in the US, its gaze is now looking to the future even beyond that, in changing the reality for patients living with other neurological conditions.
“Can it be applied on a grander scale? The answer is yes,” says Yotam.
“BrainQ believes the technology could be applied to more than stroke, and preliminary indications are that it could be effective in Alzheimer’s, Parkinson’s, MS, spinal cord injury, and TBI.
“It gives very different and almost unlimited opportunities in neuro care and we do believe this could solve many of the problems facing these different patient populations, with the ability to do this increasing all the time through our technology.”
But the next crucial milestone in the grand plan is the multi-centre trial in the US, which is set for the months ahead.
“We are now looking forward to kicking off the study. The plan is to make it to the US market in the coming years, so the main focus right now is with the multi-centre study,” says Yotam.
Tech3 weeks ago
Cognitive assessment pioneer expands into US
Interviews1 day ago
Emilia Clarke’s SameYou – a catalyst for change
Brain injury4 weeks ago
History of concussion ‘may worsen later injuries’
Brain injury4 weeks ago
Rugby players ‘show cognitive decline in just one season’
Dementia3 weeks ago
‘The world is failing people with dementia, and that hurts all of us’
Tech3 weeks ago
Google and Mayo develop AI algorithm to improve brain stimulation
Insight3 weeks ago
Nexgear Tango: increasing options on orthotics
News1 week ago
Is the Rehabilitation Prescription improving patients’ lives?