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.”
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.”
Drake Foundation: ‘Research can protect players and enable change’
CEO Lauren Pulling tells NR Times of the Foundation’s commitment to protecting player welfare through better understanding the impact of injury
As one of the first organisations to recognise and react to the urgent need to address head injury in sport, The Drake Foundation has become a central player in the fast-developing debate over how to best protect players at all levels from the devastating later-life impact of neurodegenerative disease.
Established by philanthropist James Drake in 2014, in the wake of an injury to then-Tottenham Hotspur goalkeeper Hugo Lloris during which he was knocked unconscious during a match but was allowed to carry in playing, the organisation is committed to delivering the research which will hold the key to making change.
The Foundation has been behind some of the most significant research projects to date in uncovering the impact of head injury in sport, including the Drake Rugby Biomarker Study, the first of its kind to make use of advanced neuroimaging.
The landmark BRAIN and HEADING projects – which investigate the impact of concussion in former players aged 50 and over in rugby and football respectively – are both helping to shed new light on links to neurodegenerative disease.
Over £2million has already been invested in research by the Foundation, which describes itself as being at the intersection between sports, science and society, to not only improve sports player welfare but also to advance knowledge and understanding of the brain and brain diseases in sport and across society as a whole.
Further pioneering projects are now underway, including one with retired rugby players from the pre-professional era, the findings of which could help shape the adaptations needed to properly protect players in the game in its current form.
And the need for such research is vital in helping to understand what happens in players’ brains so action can be taken to protect current and future players, says Lauren Pulling, CEO of The Drake Foundation.
“Over the last couple of years we’ve really seen the conversation on this topic shift and more people are now invested in it, it’s not just a concern for retired players who were playing decades ago, it’s a very real concern for everyone whether they’re a youth player now, whether they’ve recently retired from elite sport or whether they’re an amateur player,” she tells NR Times.
“It’s now become a conversation everyone is involved in so it’s really critical we have more research and ongoing research in this area to really pinpoint exactly what is happening in the brain, but alongside that so that sports governing bodies can take real action as well.
“While it’s going to take a while to build the full picture of what’s happening in the brain, we need to be making significant changes to pre-emptively and universally reduce players’ exposure to head impacts.
“When you know more what the actual cause is you can target that, which will help governing bodies with any protocol changes to make sport safer.”
Already, the Foundation’s research has produced some worrying findings, with its Rugby Biomarker Study revealing that almost a quarter – 23 per cent – of current rugby players sampled had abnormalities in white matter of vasculature of their brain.
While some moves are being made to tackle the issue of player safety, based on the research that exists to date – including the limit on full-contact training in rugby and restriction on high-force heading in football training – the Foundation is keen to see more action taken, backed by enforceable laws from governing bodies.
“I think for players to feel safe and youth players going into the game to feel safe, there need to be universal enforced law changes that minimise their cumulative exposure to head impacts, not just in the game but in training as well,” says Lauren.
“We want to see more from sports governing bodies. We’re really pleased to see recent changes to guidelines like the limit on full contact training in rugby and guidance to reduce heading in football in training in particular – but we’d question whether it could go even further.
“I think we need to stop being tentative and go for enforced law changes rather than guidance.”
The need for such action is becoming ever-more apparent, with players of all levels speaking out about their concerns around participation.
“We did some market research at the beginning of this year with amateur players and the parents of youth players in both football and rugby, the results of that were really concerning,” says Lauren.
“Two thirds of parents and amateur rugby players were concerned about the long-term impact of the sport on their brain health around half of parents and players in football wanted to see a reduction in heading.
“Seeing that people are that concerned, and that’s what the attitude is not just in elite sport but in the amateur grassroots game, that tell us action needs to be taken before not just more players are affected, but also for the future of the game.
“If people are dropping out then what does the future of sport look like? So I think we need to make some big changes to protect the players and the game so we don’t see another generation of this happening.”
In addition to its ongoing research, the Foundation also sees collaboration as being key to change being made around head injury in sport. Its symposium meeting brings together researchers, sports governing bodies, medical experts and other stakeholders in the debate to continue to drive the issue forward.
“There’s definitely a shift to everyone moving towards the same direction now, what we’re doing with our symposium is trying to unite that even more,” says Lauren.
“With COVID it’s been tricky to get everyone in a room and talk about the direction we’re going in, but with our symposium this year there will be a renewed focus on everyone going in the same direction, taking a united approach to tackling this issue.
“I think there’s likely more that could be done and that’s something that we are always on the lookout for. I think it will be interesting to see in light of the Government inquiry the effect that will have on uniting all the stakeholders in this field.”
Going forward, in addition to the research and collaboration, technology is playing in increasingly central role in the issue. In addition to the advanced neuroimaging which is helping The Drake Foundation in its research, innovations including a mouthguard with a sensor which can deliver real-time information to medical teams on the sidelines, are helping to provide quantifiable statistics which will help to inform research further still.
“Technology has a huge role to play in it all, in the seven years The Drake Foundation has been in this field, technology has advanced hugely,” says Lauren.
“The advanced neuroimaging that was used in the Drake Rugby Biomarker Study wasn’t part of the original proposal for that study nearly seven years ago, it has been brought along as the study progressed and I think that could turn into a really valuable tool, looking at changes to microstructures to the brain that can’t be picked up by standard MRI.
“What we don’t know at the moment are the long-term changes to white matter or vasculature so that will be a really interesting one to follow over the next few years, there is no short cut there so we need longitudinal studies using advanced neuroimaging.
“And on the sensor side, I think big data has done a lot, not just in this field but in science and medicine, so I think the more data we can gather can only be a good thing.
“What is important is how the data is then used whether it’s all put into one big data set, can we use that as a common data set, is the data comparable across different studies and sports, that will be an interesting one to see over the coming years.”
Emilia Clarke’s SameYou – a catalyst for change
Tackling the vital issues of the lack of neurorehabilitation provision and the ongoing stigma around brain injury, SameYou was founded by globally-famous actor Emilia Clarke to fight the corner and provide a voice for survivors who feel they are forgotten. NR Times speaks with Emilia’s mum Jenny Clarke, CEO of SameYou, about the charity’s brave campaigning and funding of research which is making waves on a global scale
As the CEO of the charity SameYou committed to making a difference to the lives of people living with brain injury, as well as being the mother of survivor Emilia Clarke, and a patient herself, Jenny Clarke truly understands the impact of acquired brain injury.
In a twist of fate, like her daughter Emilia, Jenny also has two mirror aneurysms in her brain. While Emilia almost died twice, mercifully Jenny did not experience such traumatic illness – yet its impact it still life-changing.
“It’s familial, apparently. It was a complete fluke that I found out, really,” says Jenny.
“I went for an MRI scan, and they said, ‘You’re fine, but did you know you have two aneurysms?’ It was a shock.
“So I do understand what it’s like to have that diagnosis, especially after what happened to Emilia.”
Emilia’s story is, of course, now well documented. Globally-famous Emilia, best known as Daenerys Targaryen from Game of Thrones, had the first of two brain haemorrhages in 2011, just after she had finished filming season one of the iconic series.
The Emmy-nominated actor and her family continue to be indebted to the National Hospital for Neurology and Neuroscience (NHNN) Queen Square in London, which they credit with saving Emilia’s life.
Emilia has since become an ambassador for the Royal College of Nursing and Nursing Now, after the hugely positive impact of nursing care during her time in Queen Square; indeed, her relationship with her nurse at NHNN continues to this day.
Her second haemorrhage, in a hospital in New York two years later, was caused when a preventative procedure failed.
Six years later, in 2019, having been shocked at the lack of focus on brain injury and its seismic impact – and the stigma that continues to persist in speaking out, despite the fact one in three people sustain brain injury during their lives – Emilia took the brave decision to share her story for the first time, to help inspire others who sustain brain injury and are forced to live with its effects.
“We realised we had to do something because she has a global platform. It took a long time to tell her story, it is very, very difficult to talk about. There is stigma and shame attached to it, people don’t know what to say, there is no common language,” says Jenny.
“Shockingly, brain injury is the biggest problem in the neurological world, it’s bigger than dementia – but who is saying anything about it?
“Emilia had no idea (anything was wrong) before her first aneurysm, we had no history of stroke in the family, there was no warning. She was going through this tremendous transition with Game of Thrones when she nearly lost her life.
“Then two years later, she came even closer to losing her life when her preventative treatment for her aneurysm went wrong, which I think highlighted how fragile the brain is. But she was lucky, being young and very fit, she survived, and has learnt to manage her residual fatigue, but our family knows how hard it is to cope with the impact of a sudden brain injury.
“This whole experience made us realise how very different things could have been.”
Committed to changing the situation, Emilia established SameYou, a UK and USA registered charity which tackles the issue of the lack of neurorehabilitation and stressing the need for holistic and ongoing care and support once an ABI survivor leaves hospital.
Building on Emilia’s profile and personal experience, alongside Jenny’s expertise in business, the charity is already making waves around the world. With a website – sameyou.org – bustling with signposting information through its UK Neuro Recovery Directory, advice from leading experts and inspirational video content, survivors can find a host of resources on a daily basis, while knowing SameYou is fighting hard on their behalf in the background to bring about change.
SameYou is also collaborating with global partners to find and test new treatments, with a number of exciting projects already underway.
“With brain injury, you’re the same person inside even if your brain doesn’t let you appear that way. But you’re the same you,” says Jenny.
“We decided the biggest gap we could see was in rehabilitation, there is next to nothing. If you’re severely injured, or have a TBI or stroke, then you can get up to 12 weeks of rehabilitation in the UK it’s similar in the States, but resources are so scarce.
“The accessibility of neurorehabilitation at the moment is completely inequitable. If you’re lucky enough to be referred to Queen Square, then lucky enough to get in, then you have access to this fantastic care – but when you have a brain injury, it does alter the way you live your life. Often, people have no hope and thousands of survivors tell us they feel abandoned.
“We want to put all our energy into this to make sure people get access to the resources and support that will help them recover.”
The scale of the task ahead is something Jenny and the SameYou team continue to be shocked by but determined to make a positive difference – “We are certainly punching above our weight as a small startup, but believe that partnerships to deliver change will make the most impact on survivors and their families,” says Jenny.
“The only positive thing I can say about COVID is this new consciousness is that people are realising hat recovery care is essential. Everyone understands the need for research, and the fantastic advances in acute care, but recovery is not prioritised,” says Jenny.
“Successive Governments around the world have ignored it, social services can’t provide it. We want to make as loud a noise as possible to represent the voices of brain injury and stroke survivors and their carers.
“When I was a child, my grandmother and aunt had cancer and that was almost shameful – but look at how we regard cancer now. It shows the great strides we have made in that area, and I see that we are at the start of making that change with brain injury.
“I do feel that there are so many people who want to make a difference – and who are doing great work, but our impact is reduced without collaboration.”
And through such collaboration, SameYou is already making its mark.
One area it is particularly passionate about is nursing care and in partnership with the RCN Foundation and the University of Edinburgh has developed the landmark Advanced Practice Neurological Rehabilitation Education Programme, to enable better care for young people recovering from brain injury and stroke.
“When the brilliant neurosurgeons have saved your life, you don’t get to see them often and the continuity of care is delivered by nurses. If you have a specialist nurse who combines her clinical experience with care and compassionate that makes all the difference,” says Jenny.
“Nurses can give confidence, strength and reassurance.
“We still keep in touch with Tina, Emilia’s nurse at Queen Square. If Emilia is in LA, she will phone with any questions she has and get those answers from Tina, which shows the level of bonding and trust.
“Through our work, we want to help create holistic rehabilitation, which we describe as being for ‘brain, body and mind’. We aren’t ashamed about using non clinical language because that’s how survivors think about it.
“Every person with brain injury wants to be treated as a whole person so motor, cognitive and emotional support is essential for the best possible recovery.”
Another initiative is to support and popularise the use of telerehabilitation for brain injury, through its work with N-ROL. Having initially been piloted at UCL, N-ROL aims to reduce social isolation and improve self-efficacy for ongoing post-stroke recovery by providing high quality, group-based online neurorehabilitation to patients denied conventional therapy due to COVID-19.
It is now being rolled out into East Lancashire Hospitals NHS Trust, working alongside the University of Central Lancashire.
“Technology is so important, and telerehabilitation has to be an essential part of the recovery pathway,” says Jenny. SameYou is partnering with Visionable, a pioneering healthcare techniology company who are using their advances to improve the stroke and brain injury pathways.
“We believe strongly that telerehabilitation gives rehabilitation people would not get otherwise. Hospitals can only see a limited number of patients a year, outpatient rehab numbers are so limited, so we see the role telerehabilitation can play.
“Like with UCL, East Lancashire are committed to neurorehabilitation. We funded a pilot there and are trying to find the money to broaden that to other Trusts in their area.”
While the pandemic has delayed one of its most eagerly awaited initiatives, the three-year project with Spaulding Hospital in the United States – which explores the interplay between physical, mental and social challenges of brain injury survivors – happily it is now set to get underway.
“We recruited the cohort and then COVID came, but the project is now starting,” says Jenny.
“We are looking at young adults’ resilience after brain injury, it is biopsychosocial research. One of the lovely things is that a lot of the team are young investigators, brilliant and very qualified to understand the issues.”
With great progress already being made for the startup charity, its mission to truly make brain injury more accepted, with more resource channeled into care provision, is one that will only grow.
“We have a long way to go,” says Jenny.
“With cancer for instance, you can ‘box’ it, whether it’s in the breast or the bowel for example, but when your brain is injured there is the sense that your brain has let all of you down.
“When you have a head trauma, people often tell us they think it’s their fault, any sort of brain injury is shockingly sudden and totally unexpected so there is no time to prepare yourself.
“With endovascular coiling, which is used to treat an aneurysm, it’s a procedure which I found out uses technology that started 20 years ago. Every minute we’re getting new upgrades and updates on your phone – why not here?
“We are a catalyst for change and are convening the most innovative minds in neuroscience, technology and neurorehabilitation to collaborate and put survivors at the heart of change and make a positive change.
“That’s what we want to do – play our part in making brain injury recovery better.”
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