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.”
Stroke survivors’ life quality greatly improved by arts – new book
Launching on World Stroke Day on 29th October, new publication Recovering Hope is the result of a decade of working with stroke survivors in hospitals and in the months following their release.
The book presents qualitative data and evidence from healthcare professionals, artists and stroke survivors into how a tailored arts intervention can assist in recovery and improve quality of life.
The book, written by Kevin Murphy, Lucinda Jarrett and Chris Rawlence from Rosetta Life, is the first output of SHAPER, the world’s largest study into the impact of arts on mental health launched by King’s College London and UCL.
The book lays out the history of the Stroke Odysseys project and explains how Rosetta Life works with stroke communities through movement, song, poetry and performance.
Alongside their methodology, evidence and testimonial is given into the therapeutic benefits of the programme.
Findings have shown that the Stroke Odysseys project can give participants a sense of being ‘free’, and researchers identified a key theme of ‘the importance of doing something new’ and ‘discovering something new about themselves’ which was rewarding and enabled people to imagine a new life after the trauma of brain injury.
Independent qualitative research and ethnographic evaluation found an increase in focus, memory, movement, and confidence, and an overall improvement in wellbeing and quality of life from participants.
The book also outlines how Stroke Odysseys complements and challenges the clinical model of rehabilitation, enabling people to progress on a personal journey of recovery and how it innovates at the junction between art making and care giving, re-connecting these related disciplines.
The Stroke Odysseys project created by Rosetta Life is one of three interventions, all of which have been proven to improve patient health, that are being trialed among larger groups of people within NHS hospitals. SHAPER – Scaling-up Health-Arts Programmes: Implementation and Effectiveness Research – was launched by King’s College London and UCL. More information about the study can be found here.
Deborah Bull, CBE (Baroness Bull) said, “Stroke Odysseys calls for us all to work together across voluntary, community, arts, health and education sectors, and government to model a compassionate community that cares for all its members – a message that could not be more important in the challenging times in which we live. Recovering Hope is an essential handbook for everyone with an interest in this field – whether clinician, artist, researcher or patient – and it will be particularly relevant to those dedicated to transforming the lives of people experiencing the effects of a stroke.”
Alongside the book launch, Rosetta Life will be streaming their 12-minute opera I Look For The Think, rehearsed and recorded over Zoom with sixty stroke survivors, professional musicians and the Adult Community Company from Garsington Opera.
At the height of the pandemic when vulnerable members of society were shielding, a community of the UK’s most isolated and vulnerable people came together online to create the opera about love after stroke.
I Look For The Think by renowned composer Orlando Gough was based on the lived experience of participant Kim Fraser and his wife and carer, Sarah. The opera will also be shown at Royal Berkshire Hospital. A trailer can be seen here.
Rosetta Life was founded in 1997 to use arts in health innovation to change the way we perceive the elderly, frail, disabled, and those who live with life limiting illnesses. Their work with stroke communities, Stroke Odysseys, started as a song cycle developed as part of Derry, City of Culture 2013.
Since then, Rosetta Life has produced Hospital Passion Play, which was performed at the Victoria and Albert Museum in 2017, Stroke Odysseys, which premiered at The Place before touring, choreographed by Ben Duke and composed by Orlando Gough.
Orlando Gough is known for his operas, choral music, music for dance and theatre, and is a former Associate Artist at the Royal Opera House. I Look For The Think is an extension of Act 2 of Hospital Passion Play.
New neuro-rehab centre gets the go-ahead
Plans to build a new neuro-rehab centre in Southampton have finally been given the go ahead.
The new 57-bedroom neurological rehabilitation centre will be built on the old Bargain Farm site in Nursling, on the north-west side of the city.
Work on the site is due to begin in the first quarter of 2021 with the service welcoming its first residents in the summer of 2022.
The bespoke facility will include physiotherapy and medical consulting rooms together with a therapy gym fitted with rehabilitation equipment as well as lounges, dining rooms, cinema and a café bar.
The facility will also include a self-contained step-down apartment.
The service will be operated by Inspire Neurocare and will provide rehabilitation care, long-term care, respite and palliative care for people with brain and spinal injuries as well as complex neurological conditions such as Parkinson’s disease and Huntington’s disease.
The centre will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
Additional features include a bespoke Covid-secure visitation suite (The Family & Friends Lounge), in-built thermal imaging technology in the entrance lobby (to ensure all visitors to the home, including staff, have their temperature taken on a daily basis) and a ventilation system which ensures air in resident and day spaces is fully changed every 15 minutes.
The centre will also have hand washing and hand sanitising stations throughout for staff, residents and visitors.
The Inspire Neurocare centre is being built by Hamberley Development, the 2019 HealthInvestor Magazine Residential Care Provider of The Year.
Daniel Kay, director at Hamberley Development, said that the neurological rehabilitation centre would be a significant addition to healthcare provision in Southampton.
He said: “The Inspire Neurocare neurological rehabilitation service will be a centre of excellence that will allow us to support local NHS services and provide much-needed complex care services for local people.
“Rehabilitation services are becoming more and more advanced and so it is vital that the appropriate environment exists to deliver these life-changing services.”
Adjacent to the neurological rehabilitation centre Hamberley Development will also build a leading-edge care home for Hamberley Care Homes that will include 80 en-suite bedrooms, spacious café bistro, private dining room, hair and nail salon, activity room and bar as well as a cinema, spacious resident lounges, dining rooms and quiet lounges.
The home will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
The psychiatrist fighting for domestic violence victims
Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.
It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.
But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.
“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.
“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.
“In Australia, we don’t have much at all for women and children victims of abuse.”
This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.
“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”
But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.
“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.
“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.
“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”
Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.
While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.
“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.
Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.
She rang the local emergency department and asked about their protocol following a head injury obtained during sport.
She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.
Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.
“There wasn’t one place that said they had a particular protocol.
“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.
Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.
“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.
“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”
Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.
“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.
This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.
“But women aren’t told this, so many don’t know that they’re at risk of these things.”
Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.
In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.
It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.
But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.
“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.
But despite these findings, Williams says it didn’t lead to any change.
“When I found all this out, I was angry and upset,” Williams says.
She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.
“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.
In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.
But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.
Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.
“We’ll all be watching and holding them accountable,” Williams says.
“I will be trying to follow up, I won’t let it go.”
Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.
“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.
“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”
Leaving brain injuries undiagnosed has significant consequences, Williams says.
“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’
“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.
“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.
“The vast majority of doctors don’t know about this. The medical system failing these women.”
There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.
But, ultimately, change will benefit these women.
“All women deserve to know the truth about what’s happening to them,” she says.
“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”
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