SameYou is only one year old, but the charity is making real changes to bran injury recovery. Jenny and Emilia Clarke share their ambitions for the charity, and the motivations behind them.
Last year, Game of Thrones actor Emilia Clarke wrote in a New Yorker essay that, while filming Game of Thrones, she had two subarachnoid haemorrhages, a life-threatening type of stroke caused by bleeding into the space surrounding the brain.
She was 24 when the first one struck almost 10 years ago. Around the time the essay was published, Emilia’s mum Jenny Clarke had a subarachnoid haemorrhage too.
Emilia’s essay was published in conjunction with the launch of SameYou in May 2019, a charity Emilia has set up with Jenny in response to seeing a lack of brain injury recovery, with the aim to help improve patients’ and carers’ experience, and remove stigma and misunderstanding surrounding brain injuries.
When Emilia told her own story last year, she said, “I told you mine, now you tell me yours”. The charity received thousands of replies. Now, Jenny has hired someone to work full time, dedicated to responding to people getting in touch about their experiences.
“When you’ve had a brain injury, it’s a very difficult thing to do to talk about it,” Jenny, chief executive of Same You, tells NR Times. “It’s about hearing stories and giving people the sense they’re not alone.
“One of the problems with brain injury is that you can feel very isolated, and it feels very difficult to believe you can be the same as you were before, when inside, you’re the same.”
Jenny, who was previously vice-president of marketing for a global management consultancy, helped care for her daughter when she recovered, so has had experience as both a patient and a carer. Both of their lived experiences, Jenny says, puts them at an advantage.
“Every clinician I’ve spoken to believes this is right approach,” Jenny says.
Jenny argues there also needs to be more funding put into recovery.
“When we talk about health, everyone understands the value of research and how that feeds into treatment. Recovery is the third element,” Jenny says.
“But provision for recovery is inadequate. It’s a postcode lottery whether you get the care because brain injury is so complex and there are limited options on the NHS.
“There’s strong evidence, and it’s our belief, that with increased, high intensity treatment you can make huge progress, which isn’t always the message doctors tell patients after they’ve had a brain injury.”
Same You is also looking at finding ways to fund innovations that help to improve the treatment of patients in brain recovery. While the charity is young, it is already making real-world changes.
“At the moment we’re showing we’re taking action and that we’re a credible, long-term, viable resource for people. We have a few programmes underway where we’re making a difference with action,” Jenny says.
“We’ve got an opportunity to do things a bit differently. We’re a nimble, agile organisation, we’re able to create a fundraiser in a few days.”
For example, when coronavirus hit, Jenny and Emilia put a call out to help fund a virtual rehab clinic for people with brain injury, in collaboration with Queen’s Square National Hospital in London. Halfway through the programme, 131 so far have benefitted from the programme.
The charity is also working with the Spaulding Rehab Hospital in Boston, US, funding a two-year programme of pilot treatments. Researchers there are looking at what happens in young adults and how resilience can play a part in their recovery.
Another project the charity has just launched is the Nightingale Challenge Global Solutions initiative, involving almost 30,000 nurses and midwives, which aims to aims to empower and equip them in brain injury care, starting on the 22 July until the 23 September.
The programme, Emilia said in a recent Nursing Now webinar about the programme, will challenge nurses to look at the whole area of rehab.
“You get a huge amount of attention when you’re in hospital, rightly so. But not enough is being done for patients and their families after a brain injury between leaving hospital and getting back to society,” Emilia said on the webinar.
After her first brain haemorrhage, Emilia says she couldn’t wait to leave hospital and go home.
“But in the car leaving hospital I panicked because I’d been in such a safe space in hospital,” she says.
“Leaving hospital feels very unsafe, it’s an alien environment.”
“When you’ve broken a limb, you have something to show the world what’s wrong with you. When you look perfectly normal you feel doubly anxious, you need to be doubly cautious about the situations you put yourself in. It suddenly felt like home was the most dangerous place in the world.
“I was incredibly lucky. I has a specialist nurse who I could call when I had another headache, or didn’t know when I could wash my hair, or felt dizzy or sick. She was on the other end of the phone and could talk me through it.”
Nurses also ‘translated’ the jargon doctors told her, a lot of which she says she didn’t understand.
“It’s only when we feel safe we have confidence to feel better,” she said.
The Nightingale initiative will encourage nurses to look closely at brain injury patients and identify any gaps, and come up with solutions together.
One example of a solution, Emilia says, could be finding places on a ward where nurses can take a patient and their family to explain what has happened and what they can expect to happen next.
“Our personal experience is that patients have had such a shock they don’t always take it in the first or second time. It takes repetition before what has happened to them sinks in,” she said.
“Ask patients how they’re feeling and listen to what they have to say, because when you’re on a ward as a patient and someone asks you if you’re okay you say you’re fine. You’re on display on a ward. Take the patient to a quieter place and ask them honestly how they’re feeling. This can have a huge impact.”
Jenny and Emilia are encouraging nurses to speak to patients who’ve been discharged and ask them about their experience of rehab, and what they think is missing, as well as medical professionals across disciplines.
“It’s important for nurses to amplify hope. A great number of people can improve a patients’ quality of life by the dedication they put into it, help empower patients to take control back and take over their recovery when they get out of hospital,” Jenny said.
While Jenny wrote in the New Yorker essay that she has made a full recovery, she says she’s dedicated to improving care and treatment for others in the position she was.
“I knew I wanted to try and give back in some way,” she said. “When your life gets saved twice, you know you’re on this earth to help.”
