SameYou: advocating for improved brain injury care

UK and US-based charity, SameYou, is on a mission to address the critical gap in brain injury care – working to highlight the lack of consistent rehabilitation pathways and holistic support, and amplifying the voices of patients to ensure they are heard.

Founded by Game of Thrones actress Emilia Clarke and her mother Jennifer Clarke after both experiencing brain aneurysms, SameYou emphasises the importance of psychological and emotional recovery – working with the awareness that brain injuries often lead to chronic conditions.

Focused on increasing online neurorehabilitation, providing peer support, and enhancing information resources for brain injury survivors, the charity’s work has received recognition through the awarding of MBEs and a shortlisting for Charity of the Year 2025 in the British Diversity Awards.

Neuro Rehab Times speaks to Jennifer Clarke, MBE, to find out more about the charity’s work.

“Up until the point of Emilia’s first aneurysm, we had actually never thought about brain health, brain injury, or brain maintenance,” explains Clarke.

“Because of the insights that we received, both in the UK at UCL Queen Square, which is a fantastic place and also in New York, when she had her second, much more serious experience, it was very clear that acute medicine copes with a lot of problems in an innovative way.

“Then when you’ve had an experience and you survived it – it really is like falling off the edge of a cliff.

“We are here to raise awareness, but also to try and see where we can find small, innovative ways of helping minimise the gap between what is available in rehab and what people actually feel they need and want.”

One of the key problems with supporting people with stroke or brain injury following acute care, says Clarke, is the lack of care pathways.

“It doesn’t seem to matter if you’ve had a brain injury or a stroke, it matters in terms of pathways,” explains Clarke.

“What we do see is that when you have a stroke, there is a stroke pathway – there’s an acute pathway and there’s also a rehab pathway, but I have not met any multi disciplinary team therapist in the UK to say that the work that they do meets the guidelines for stroke rehab.

“So it’s very difficult because of a lack of resources – there just aren’t enough people in the profession meeting the demand.

“There’s no consistency in delivery because of the lack of resources, and it gets worse because of the constraints over budgets.

“If you have a brain injury or a stroke, it’s an incident, but it also gives you a chronic problem. Your life changes to be one that is somebody living with a chronic condition, and that isn’t always recognised, and it’s certainly not provided for.

“Equally, when you have had a brain injury, you get care for specific things such as speech and language problems, or a particular cognitive issue or physical upper limb issue, for example. You are treated for those elements, but the people we speak to say that nobody really looks at them as a whole human.

“Whatever happens, it is such a trauma to your life to have a brain injury, it does feel as though it’s very different from having another sort of injury. You need lots of psychological support, mental health support, emotional recovery support, and that is really hard to find.

“We see that this is what’s really needed, a complete holistic approach. But frankly, we’re so far away from that because it’s so difficult for somebody to get upper limb support or ability support, or speech and language support.

“People are looking for ongoing, high quality support. It’s about looking at whether you have a life that you can recognise and want to live? How do you coach people going through all of the barriers they have and helping them get back to work.”

Clarke highlights that the Covid-19 pandemic reduced access to vital care for stroke and brain injury survivors, underscoring how access to rehabilitation care is a postcode lottery.

To help fill this critical gap – SameYou launched an online neuro-rehabilitation service called NROL.

First launched as a pilot in partnership with University College London and University College London Hospitals NHS Foundation Trust, the programme is now hosted at East Lancashire Hospitals NHS Trust (ELHT) and delivered across Lancashire and South Cumbria, with plans to expand to Cheshire and Merseyside.

NROL provides online video call group rehab that focuses on cognitive and communication therapy as well as physical therapy – improving access for people who may not be able to reach such vital services.

Clarke says: “NROL has gone from strength to strength – from proof of concept to pilot – and the team in Lancashire have received funding to do more intensive neuro rehab online.
“NROL is a new way to deliver rehab services to groups of people, as opposed to working with people through an app or platform. So this is something really different and simple.

‘A huge amount of work is being done through UCL and with Lancashire’s teams to really shift the way that they deliver their service so that it can be really helpful and useful. It is something that’s accessible online and is also cost effective.

“We also see that one of the huge benefits of NROL for people, is that when you give them the ability to talk to others who’ve gone through the same lived experience, they are able to discuss their issues with each other so they can feel less alone, and know they are not the only people going through it.”

Beyond supporting patients with access to online rehabilitation SameYou works to provide information and knowledge for individuals who have been discharged from acute care such as information on nutrition, exercise, handling fatigue, or handling depression.

“We are not a large charity in any shape or form, but I firmly believe that there are small changes that can be made, that almost anybody can do,” says Clarke.

“We do need more investment from any sort of organisation, not just the NHS, but other organisations, to make sure that more therapists can be trained. Being able to speak for other people is such an honour and a privilege.”