Using the deeply personal experience of its founder Emilia Clarke, pioneering charity SameYou is committed to challenging the stigma around brain injury and widening access to neuro-rehabilitation.
Here, CEO and co-founder - and Emilia’s proud mum - Jenny Clarke discusses the situation for survivors, what action must be taken, and how the first-of-its-kind SameYou Centre is set to up the ante in support for people living with brain injury even further
As a young stroke survivor in the glare of the international media spotlight, actor Emilia Clarke’s recent BBC interview to bravely discuss her two near-fatal brain aneurysms thrust the issue of brain injury very much to the fore.
Disclosing that she has “quite a bit missing” from her brain following her aneurysms in 2011 and 2013, Emilia has made an astonishing recovery, without interrupting her career, and she is currently making her West End debut in The Seagull.
"The amount of my brain that is no longer useful, it is remarkable that I'm able to speak and live my life normally. I'm in the really small minority of people who can survive that,” Emilia told the BBC’s Sunday Morning.
And while people collectively marvel at her recovery, and the honesty with which she shared her story - no doubt inspiring countless fellow survivors around the world with the power of her words - the awareness around brain injury Emilia is helping to generate is still not translating into urgent widespread action in delivering the support survivors so badly need.
Access to neuro-rehabilitation remains at a premium, with many people receiving the minimum of six weeks of community support after discharge from hospital - but with the impact of the COVID pandemic, even that scant access to support is routinely being delayed by weeks, and often months.
The charity SameYou - established by Emilia and her mother Jenny to help raise awareness of, and remove the taboo around, brain injury, and to find innovative ways of increasing support to survivors and families - is vocal around the need for significant change to happen.
Here, in an interview with NR Times, Jenny shares her views on what action should be taken and how SameYou is playing its role in changing the future for brain injury survivors.
‘We need a co-ordinated national approach’
The regional disparity in access to neuro-rehabilitation is known to be a significant barrier in the recovery of many survivors, something amplified further by the pandemic.
And while the creation of the national ABI Strategy is brilliant and a step forward in action being taken to address - and hopefully rectify - this situation, Jenny believes that national collaboration could really make a sustainable difference.
“Survivors and their families need to see that they are being listened to. There is a clear gap between what’s currently available and what people tell us they urgenly need to accelerate their recovery,” says Jenny, CEO of SameYou.
“I think it needs to be a co-ordinated national approach, and the obvious but hard to achieve focus is that we must collaborate. None of us can make this huge change by ourselves.
“The system currently is so fragmented, and pathways inconsistent. There is a real and urgent need to focus on rehabilitation and recovery for people with brain injury.
“We have a stroke pathway, but after acute care and hospitalisation, people tell us they feel abandoned . And without holistic rehabilitation strategies in place, this will not change. With traumatic brain injury, there isn’t even a pathway. And we very much need to have a clear pathway forward, to make sure all brain injury patients can have the essential same care they need.
Jenny also believes education is crucial in effectively tackling the issue, and making people realise their role in addressing brain injury and dispelling the stigma.
“If you look at the national FAST campaign around stroke, that has been such a success and people now understand what it looks like to have a stroke, and they can take action. A national campaign around brain injury is something that should be considered,” says Jenny.
“How do we create a national campaign to raise awareness around people who've had a brain injury, people with a chronic, long-term problem? "
“If you have heart failure, there are clinicians around the country who will have responsibility for taking care of you after that, and there are many organisations to
take care of you if you're going through cancer.
“But where is the care for people when they have had a brain trauma? Do people even fully understand what trauma means? Do they know the signs of that and what to look for, do they know what to do?
“And as well as knowing the signs, we need to look at helping people to understand what it's like living with the impact of brain injury. A lot of it all starts with education.
“You can't expect people to know what to do unless they are aware of the problem, and then understand the complexities of this particular problem. So in that sense, education around the issue is very important.
“People write to us, we have had thousands of messages from people who live with consequences of their brain injury, and they don’t feel like they are even counted. They are living with this unmet need for support and neuro-rehabilitation, and they’re not getting anywhere near enough.
“We need to develop conversations about it, so people become more aware and those who are living with brain injury can access the support to live their lives as fully as possible.”
Plans for a UK-first in brain injury support
SameYou was established to raise awareness of the problems, using Emilia’s personal experience to represent the problems millions of survivors’ face.
The charity is keen to play its part in helping to end the inequality around brain injury support, and in the three years since its launch, has been committed to highlighting innovative new ways in which to deliver the much-needed access to rehabilitation - and its latest project is typically inspiring and groundbreaking for the pioneering young organisation.
Keen to make an impact at ground level, SameYou is partnering with UCL and UCLH - where Emilia was treated after her first aneurysm, and her family are still indebted to the team for their outstanding care and support - to create both an online platform and physical SameYou Centre, to focus on emotional and practical recovery.
The centre would help survivors to tackle ongoing issues as a result of their brain injury, addressing the growing gap in provision around mental health support in particular.
“People talk about this (brain injury) being a niche - but when you think of how widespread the problem of mental health is after the COVID pandemic in particular, and add that to the fact that one in three people will have a brain injury in their lifetime, you realise this is not niche at all,” says Jenny.
“We know there are a great deal of people who probably don't even hit any NHS radar, because they think there's no help there, and the support there is for mental health and brain injury isn’t connected with the wider neuro-rehabilitation.
“It is so important to have ongoing support - not six weeks, not ten weeks, this should not be time limited. People with brain injury should be allowed to feel they can get their lives back and be given the strategies so they can get involved in their own recovery."
“You have this life changing event, and as a young person, maybe you haven't got even your life together yet. And then brain injury happens and you're pushed off course. If you're 25, how do you do manage that?
“And then there are the mental health consequences of saying, ‘I've nearly died, my life is now really different. There are some things I can't do, how can I live a fulfilling life?’ Emotional recovery and mental health recovery is the same thing.
“We have come across countless people who need that mental health support at various stages of their recovery, and it’s just not there. We should be giving them the skills to help themselves, and that is what we want to deliver from our centre.”
Fundraising is currently underway for a pilot programme with Jenny and her fundraising team securing seed funding from a number of sources to get the project off the ground.
“This is an innovation, it’s a work in progress, and we are working with Queen Square to really build out the protocols and the process of how we tackle this,”
“The team at UCL and UCLH are very committed to creating this service - and we (at SameYou) really, really are. We are having very detailed conversations about what we could be doing and what we shouldn’t be doing.
“This has been on the cards all through lockdown, but we have had to wait for the right time to explore this further. It is very exciting to explore plans more thoroughly.”
Making change happen
Having only marked its third anniversary in March this year, SameYou has already made a sizeable impact - both in terms of getting brain injury on the agenda, and in leading the innovation to bring about change.
Only weeks into the onset of the pandemic in the UK, in early April 2020, SameYou partnered with UCL and UCLH to launch NROL - a pioneering telerehabilitation programme which would translate in-person multi-disciplinary therapy into virtual, ensuring neuro-rehabilitation could continue for countless people, whose recovery may otherwise have been paused.
A study has since verified the efficacy of NROL during that initial crucial period, with statistics showing it had helped participants to “significantly improve” on defined outcome measures.
Its success has led to its expansion into a partnership with East Lancashire Hospitals NHS Trust (ELHT) and the University of Central Lancashire (UCLan), which will now be rolled out across Lancashire and South Cumbria after securing National Lottery funding.
Talks are now underway with other NHS Trusts to bring them on board to deliver NROL, which is now operating as a hybrid model, but with the crucial ongoing access to virtual neuro-rehabilitation being a permanent staple of the programme.
“In our first year, we really got ourselves revved up and clear about what we wanted to do - but then when COVID hit, it did impact us tremendously,” says Jenny, who hails the efforts of SameYou’s “wonderful volunteers” around the world as playing a key role in the charity’s ongoing development.
“We felt we were only just getting started and then we were thrust into such a different environment. While we had to reduce a lot of what we were doing to remain sustainable during that period, we moved our focus onto the telerehabilitation.
“In our ongoing discussions with UCL and UCLH, there was a big problem around how people could be safeguarded after leaving hospital, when COVID meant that all services were put on hold, and therapists couldn't go into people's homes.
“We looked at it from the angle of ‘You're in hospital, and you're having to leave hospital earlier than they would like. How could we do something that would give some support very early into the recovery of stroke or brain injury survivors?
“This moved very quickly, within weeks, and UCL were just so responsive.
It’s one example of what can be achieved through collaboration.”
Among its other successes to date has been the collaboration with the RCN Foundation around nurse-led holistic neuro-rehabilitation for young adults.
To date, the partnership has delivered a research study from the London School of Economics, demonstrating the economic case for investing in advanced nurse practitioners in neuro-rehabilitation; the Young Adults Rehabilitation Needs and Experiences following Stroke (YARNS) exploratory study by the University of Edinburgh of the lived experience of the neurological rehabilitation and care of young adult patients aged 18 to 40 years, following an ABI; and a UK-wide post-graduate certificate in neuro-rehabilitation and care with the aim of enhancing advanced nursing practice in this speciality.
“We are looking to add another level of support for young adults with brain injury, and to collect data. We don’t have enough data and that is absolutely crucial to change being enabled,” says Jenny.
“We are currently working with amazing nurses and the wonderful Professor Aisha Holloway at Edinburgh, and we’ve done the first round of the programme, but are now extending it because nurses are under so much pressure in their roles anyway, they found it difficult to do this post-grad work in just a year.
“Nurses have an absolutely crucial role to play in neuro-rehab, and the conversations around this started with clinicians because of Emilia as a young adult brain injury survivor, and now this programme will be able to help so many other people.”
With many more projects in the pipeline - including developing partnerships in the United States, with Spalding Hospital in Boston, Mount Sinai in New York and UCSF - at the root of everything, believes Jenny, is collaboration.
“The scale of the problem is so big, that by convening people, thinking about it collectively and coming up with ideas, we can make a difference together,” she says.
“We have our role to play, but we are a very small charity who are keen to play our role in making change through innovation.
“In the States, we are seeing early-stage trials around brain repair, and that is something really important to think about for the future. We may be years away from that now, but we should be looking at the innovation and long-term developments in addition to what we can do right now, the things that don’t require massive change.
“Our focus is on both - playing our role in funding the future while making positive change today.”
Pioneering report to give survivors a voice
Acutely aware that countless survivors feel unheard and alone, SameYou has produced the Untold Story of Brain Injury, which heard the stories of resilience, loss, pain and recovery from over 1,400 people living with brain injury.
The report helped to highlight the life-changing impact felt by so many survivors and their families in the first-of-its-kind analysis of experiences, and looks at the many challenges they continue to face, in the hope of laying bare the reality of their situation and widening the understanding of society at large as to the impact of brain injury.
It helped to establish the hugely positive effect of Emilia sharing her story, with many survivors speaking of their gratitude that someone in the public eye would speak so openly and honestly about their experience.
“I get days when I just want to give up,” one survivor wrote to Emilia for the report.
“But after hearing your story, I realise I’m not on my own. I’m not the only one in the world who has had it. It turns out that my favourite actress has had the same as me!”
It also helped to articulate the traumatic ongoing impact of brain injury and how it manifests itself.
“Another sharp, sudden pain occurred, but this one was about 100 times worse than the first. If I had to imagine what being shot in the head felt like, it would be like this,” said one survivor.
“When I was allowed home, I was angry and confused about a whole new set of things - not being able to walk, not being able to work, not being able to read, or to be alone,” said another.
“Now it’s almost a year later and I’m still confused and angry about a lot of it - not being as fit or strong, not being allowed to drive, not being able to stay awake.”
The lack of awareness of brain injury was also highlighted in the report.
“The need for awareness about the effects of this terrible illness is great; I’ve found hardly anyone understands why I’m still not better,” said one survivor.
“Just because I look normal, people think I am normal, but I’m not. It’s frustrating that I’m not helped because I don’t look ill.”
For brain injury survivors - particularly those whose situation is similar to Emilia’s, with uncertainty as to whether stroke may strike again - the mental impact is huge.
“Every day I am now on edge, worried if something might happen, because it could happen at any moment,” one survivor said.
Another said: “Some days are still dark and hard and anxiety is a major part of my life today that I have to be constantly vigilant about.”
For everyone, the importance of neuro-rehabilitation was clear - but access to resources was found to be difficult.
“Receiving optimal neuro-rehab services and navigating the system has been a nightmare to say the least,” said one.
“The need for more services and awareness on brain injury is vital, and for anyone who is suffering with the effects of a brain injury - or their families or friends, as it really has a knock-on effect - more support and awareness needs to be put forward,” said another.
But despite the ongoing impacts and huge difficulties in accessing resources, one distinct theme that came through was hope.
“This has been a difficult journey, but has taught us all the value of life and relationships,” said one survivor.
Another said: “Recovering from it gave me a new vision for my life; something I’m very grateful for.”
To help sustain its pioneering work and take forward plans for its SameYou Platform and Centre, the charity’s latest fundraising drive focuses around cycling.
Participants in Cycle Ibiza will cycle either 200km or 140km over two days between April 21 and 24 next year.
With a fundraising target of £1,500 per person, the event is open to cyclists of all abilities and will generate vital funds to underpin SameYou’s work, as it continues to grow and extend its support to more survivors and their families.
Bikes can be hired or participants can bring their own.
For anyone wishing to register interest in taking part, or for any businesses
who would like to support the event through sponsorship, contact: