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.
Think Therapy 1st – ‘Never say never’
NR Times learns more about the Specialist Rehabilitation Occupational Therapy provider’s ‘can do’ approach to rehab
‘You’ll never be able to’ is a phrase the team at Think Therapy 1st readily admit to actively fighting against. It certainly isn’t in their vocabulary when it comes to how they work with clients.
“So many people are almost written off by medical professionals, even at the start of their rehab journey, but you’ll never hear that from us,” says managing director Helen Merfield.
“Instead of just saying ‘you’ll never be able to walk again’, if it’s remotely possible, we’ll do absolutely everything we can to get them walking again.”
And Specialist Rehabilitation Occupational Therapy (SROT) provider Think Therapy 1st has a stellar record when it comes to delivering such life-changing outcomes for clients across the country, in home and community-based settings.
From the woman told she’d never be able to walk again, who, following support from the team, was able to walk three miles around an air ambulance field with a walking frame to raise money for their charity. To the man told he’d never be able to live unsupported, who now lives completely independently and looks after his son every other weekend.
“We also had an 84 year-old lady who played badminton five or six times a week; I think she was semi-professional in her youth. She was told ‘you’ll never play badminton again’ and that destroyed her soul to start with,” recalls Helen, an ex-military nurse.
“We had to adapt her serve, sometimes she used a chair, but she was playing and she was happy, and that’s exactly what we want to achieve for our clients.”
That commitment to overcoming the seemingly impossible is what Think Therapy 1st (TT1st) believes is its real difference.
By putting clients at the heart of the rehab, empowering them to take the lead on what they want to do, the TT1st OTs combine challenging and stimulating activities into therapy sessions which will enable them to progress.
“We wrap therapy around small, everyday tasks, and then build on that so they can get to where they need to be and get their lives back on track,” says Helen, whose fellow owner-directors are two OTs and a social worker.
“We explain the process of what we’re doing and why we’re doing it. So, for example, we might go on a woodland walk, which is maybe something they used to enjoy but haven’t done for a long time, they’ll also be working on their exercise tolerance, their coordination and general mobility.
“We’ll explain what we’re doing and why we’re doing it, and then they’re much more engaged in the process.”
TT1st also has a dedicated Children and Young Adults Service (CAYAS), which delivers specific paediatric support, provided with the same ‘never say never’ determination of its adult service.
“We had one boy who had a head injury, but prior to that he was up at 5am every day doing his newspaper round,” says Fiona Peters, CAYAS service lead.
“So, one of the first things I did with him was get him to draw me the map of his route, and then we went to walk it. And that helped him realise he’d forgotten part of it, but it was also really healing for him because he dropped in on a few people he used to deliver the newspapers to.
“Working with parents, I think it’s about drip feeding information. At first, they can be hypervigilant, wrapping their child in cotton wool, which
is understandable, protecting them from challenges.
“Our role is to support the parents to feel confident in confronting challenges rather than shy away or deny their children the opportunities these present to bring about positive change. It’s about ensuring the parents are aware of and engaged in the therapeutic process.”
“We really focus on embedding the learning, not through reams of paper or stuff to read on the computer; we help them to feel it, to understand it. And I feel like that’s where our speciality lies, in supporting them to understand their situation and to know where they can head with it,” says Helen.
“In what we do, the OT would be the head of the multidisciplinary team but we are standing arm in arm with the client.
“If they need physio, speech and language therapy, neuropsychology, any other modalities, the OT would work with them to help them engage those people. We make sure that we are aligning our goals in a really multidisciplinary way.
“For example, any neuropsychology outcomes would be really informative for our process of what to concentrate on with the client. We try to make sure that the goals are aligned so that it works in the client’s best interest at all times.
“But I think where we really do go that extra mile is in building in a relapse prevention plan whilst we are still involved, so people recognise what they’re doing, while they’re doing it. They are at the centre of the process – we don’t just want people to have things done to them, we want them to be part of it.”
Fiona adds: “Historically, people have been passive recipients of the medical model, just waiting for medical recommendations. We are changing the locus of control so the clients are full participants in their own rehab journey.
“We help our clients understand, that in order to get to the kitchen to make a cup of tea, which is what they really want to do, they could be doing things of benefit to their recovery – flexing their leg, building their standing tolerance, co-ordination, thinking, planning, and other executive functions as well.”
TT1st are also very definite about the time period they spend supporting a client – a maximum of 12 months of hands-on therapy, with up to three-months transition period.
“The analogy I like to use for transition is that it’s like having stabilisers on a bike, once you take the stabilisers off, you don’t just let them go and hope for the best,” says Helen.
“We want a person to be as independent as possible when we leave; they always know they can come to us if there’s a crisis or if something new is happening in their life, but the purpose of what we do is to train them and empower them to be autonomous.”
TT1st also has dedicated functional management of pain, fatigue and anxiety programmes. HELP – Holistic Education for Living with Pain, HEAL – Holistic Education for Anxiety Liberation, and FEEL – Fatigue Education & Exploration for Living which correlate with NICE guidelines.
“We were finding that a lot of our clients suffered from pain, fatigue and anxiety when we met them, and the impact of having been left for a long time, without any support for this, had made things worse,” says Helen.
“People were being referred to us late; they’ve often become quite entrenched in the medicalised version of their health, and pain becomes a debilitating factor.
“The quicker we get them, no matter what the injury, the quicker we can get them better, because they haven’t become entrenched in the medical model.
“In our experience, pain is something doctors often disregard, but through holistic education, we can help make lasting changes to how people control and live with pain.”
The business, established six years ago, has built a strong reputation for its service – and particularly its outcomes – and continues to expand. With a core team of in-house OTs, it has growing numbers of associates across the country who deliver its bespoke support to clients.
“Cases come to us from all over the country, and we identify local OTs with the appropriate skills to work with each client,” says Helen.
“One of our in-house OTs acts as the long-arm mentor on every case. We meet monthly to review each case, and every single one is discussed by all the team. So, there will be seven OTs and a nurse looking at all the cases, to make sure they’re on track.”
Fiona adds: “I think OTs are used to working within boundaries, but when they join us, they suddenly see they have limitless potential.
“We believe that if you can clinically reason why something is beneficial to a client, we can generally find a way of supporting that, and finding the funding to achieve it.”
BABICM – rising to the post-pandemic challenges and opportunities
Vicki Gilman, chair of BABICM, shares her priorities for the organisation as case management looks to a new future
Vicki Gilman has taken up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future.
A future where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time.
While undoubtedly an exciting time with huge potential for case management, the challenges – and opportunities – for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty.
“Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times.
“There were several things in the back of my mind then that I thought might be key themes – some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will go back from. So, in many ways, this marks a fresh start.
“I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case.
“The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities.
“As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else – were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.”
Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela Kerr, who is now chair of the IRCM. BABICM will continue to play a central role in the ongoing development of the body, as a founding member, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future.
An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair.
Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm.
- Equity and belonging
“I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion,” says Vicki.
“This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.”
“It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’.”
Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM,” she says.
“For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words.”
“We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki.
“Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level – organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few.
“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.”
- The future as a profession with registration
One of the most significant changes in case management, the creation of the IRCM, is set to professionalise and regulate case managers in a sector-changing move.
“We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki.
“We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”
- Training and learning
“I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says.
“We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further.
“In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”
“I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki.
BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic.
“There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in,” she says.
“This will of course add even further to our library of resources to support the work of case managers.”
- Providing useful resources to members
“I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki.
“Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs.
“We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others.
“As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”
Could this be the long-awaited breakthrough in GBM?
Through electric field therapy, QV Bioelectronics are looking to achieve better clinical outcomes and improved quality of life for glioblastoma patients
While breakthroughs in cancer treatment over the past 40 years have been truly life-changing, with recovery prospects and life expectancy in many common cancers revolutionised, that sadly is not true with regard to glioblastoma (GBM).
A particularly aggressive form of brain tumour, the outlook for GBM patients continues to be bleak, with the average survival time being just 12 to 18 months despite an intensive treatment regime comprising surgery, chemotherapy and radiotherapy. Only a quarter of people diagnosed with GBM survive for longer than this, with just five per cent still alive five years later.
In a world where cancer treatments continue to be developed successfully, the overall outlook for most cancer patients is improving accordingly – 76 per cent of breast cancer patients now survive for at least ten years following diagnosis, a rate which has doubled in the last four decades. Sadly, this has not been the case for GBM patients.
And it is that lack of progress in GBM treatment, which has inspired the creation of what just could be the long-awaited breakthrough.
Through the work of QV Bioelectronics, the potential of electric field therapy in helping GBM patients see better clinical outcomes and experience improved quality of life is being realised, with the combination of the biomedical engineering and neurosurgery expertise of its founders, helping to give hope for the future in an area where advances are desperately needed.
“It is too long since we have had any change in how GBM is treated. The needle has moved massively in cancer care, but not in GBM. Our ambition is to increase the number of ‘long term survivors’ significantly – the ones who survive for several years, who currently only make up a very small percentage of all GBM patients,” says Qasim Akhtar, head of business development at QV Bioelectronics.
And with the development of its implantable GRACE device, which would be used alongside the current standard of care, the business is already on its way to delivering on its ambitions. With a prototype device already made, and ongoing investment being raised to support its progress – with the last £735,000 seed funding round significantly oversubscribed – QV Bioelectronics is striving to be available on the market in late 2028.
Further research and development is ongoing, with pilot studies moving into large animals next year, as QV Bioelectronics continues to move closer to its life-changing technology becoming reality.
The business, established in 2018, was inspired by the experience of Dr Richard Fu, a neurosurgeon who was determined to develop better treatment solutions for GBM patients. He was aware of the recently developed approach to deliver electric field therapy through an externally worn scalp cap, which had already shown promise in clinical trials, but believed that an implanted approach to deliver electric field therapy continuously and more precisely could have the potential to dramatically improve patient outcomes whilst also improving quality of life.
“Too often, patients were being told they might have a year left. Some of whom were in the prime of their lives, but there was nothing the doctors could do. Patients, and doctors too, were crying out for improved treatments,” says Qasim.
While carrying out research at the University of Manchester, Dr Fu met Dr Christopher Bullock, a biomedical engineer with expertise in medical device design, biomaterials and bioelectronics, who was completing a PhD in regenerative medicine.
“They became fast friends in the lab and the idea took off from there. Chris had huge complementary experience and knowledge in the use of advanced materials in bioelectronics, and the concept drew upon Chris and Richard’s joint expertise,” says Qasim.
“They believed that they could create something highly innovative – an implanted device made from advanced materials which could deliver electric field therapy 24/7 and had the potential to improve survival rates whilst not affecting a patient’s quality of life. This would represent a huge breakthrough.”
And from that concept has come the development of GRACE. After winning the Eli and Britt Harari Award from the University of Manchester in 2018, established to develop commercially-viable ideas using the wonder material graphene, Dr Bullock and Dr Fu used the £50,000 award to begin the process of bringing their idea to life.
From there, QV Bioelectronics – which rebranded from Honeycomb Biotechnology – has continued to develop, with a now six-strong team, of which Qasim was the first employee, and expansion into the UK’s biggest bioscience park, Alderley Park in Cheshire, helping to propel it forward. Accelerator programmes at Alderley Park, RebelBio (at Imperial College London) and Creative Destruction Lab (at Oxford) have also helped to lay the foundations for its future.
Significant investment has already been raised, but much more will be needed to ensure QV Bioelectronics is able to achieve its ambitions and make its technology available to medical teams and patients.
“We know we’re going to have to raise a lot of investment but we’ve had great support for what we have done so far, and from investors buying into our plans. We need to go through safety clinical trials and major international trials before we can look at securing market approval, the regulations for which are very tight, as they should be,” says Qasim.
“When we go into the studies in large animals in about a year’s time, we hope to show the progress we’ve made with some exciting safety data, and we can move forward from there.”
“It’s amazing to think how far we have come already. When I first joined in 2019, we were working on ideas in co-working spaces and coffee shops, but we are moving forward strongly. There is a huge amount of work to do, but we are all inspired by the end result.”
“Our big ambition is for this to be something that a surgeon recommends whenever a GBM patient has surgery, and for this decision not to be limited by price. In the longer-term, we can also look at whether we can expand what we do into other neuro-oncologies, and whether we can integrate detection systems – but for now, the entire focus is on GBM, an area where change is so badly needed.”
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