World Stroke Day: Why we are failing young stroke survivors

Chris Moon was just 29, fit and healthy, when he suffered a stroke.

But despite being upbeat at the start of his battle back to full health, he quickly found the aftercare is seriously inadequate for young stroke survivors – which is often seen as a disease of the elderly.

From poor support for help with mental health issues and returning to work, to limited access to speech therapy after experiencing crippling challenges socialising with friends, to a lack of couples therapy which spelled the end of his ten-year marriage to Hannah, Chris says they were left to navigate the major hurdles alone.

A study published in the Lancet Neurology this month says that more people worldwide are surviving after a stroke. There are no increases, and even some decreases, in strokes for people over 70, however, there are increases in strokes in younger people, especially those under 55.

Research conducted by SameYou and the Big Issue, outlined how important work is for survivors, improving quality of life, productivity and reducing the risk of depression.

Chris, a 37-year-old builder from Sussex, says: “I had to fight to get back everything that was important to me. Getting my confidence back with nobody to help you or guide you is impossible.

“I’m just thankful my family and friends were there to support me. If you were left to your own devices, it wouldn’t be achievable.

“I just wanted to get back to my old life.”

Hannah, 35, who is an environmental insurance broker, adds: “It soon became apparent that both of us needed a different kind of support, real-world support, to get our lives back on track. You need this to give you hope.

“I think you’ll never know if you would still be together if this hadn't happened. We still love each other we just can’t be together right now.”

Here, both give their thoughts on what needs to change.

Hannah's story

“Chris and I were happy, fit and healthy. There was nothing, no signs medically, that indicated that Chris was going to have a stroke.

“Chris smoked when he was younger, a lot, and I always used to say to him that it will come back to haunt you. But I do remember him having really bad migraines and having palpitations. I used to say that doesn’t seem right. But, as a typical bloke, he was just like, no, I’ll be fine.

“Just two weeks before, Chris had had a football accident and suffered a big cut to his shin. He went to hospital and got it sewn up but while he was in A&E, he was asked quite a few times by doctors ‘are you drunk?’

“He hadn’t been drinking but said he felt really weird. I remember him calling me and saying I don’t think I should drive home. I was thinking that he might have been feeling faint, in shock. He’d had stiches, your body does that to you.

“Two weeks later, he got up to get ready for work. It was 6.30am and he went to the bathroom. I just heard him banging the shower screen hard against the toilet. I called out to him: ‘what are you doing?’ He didn’t answer me. Then as he came back, he just looked at me. He couldn’t speak and I asked if he was sleepwalking. He looked through me like I had no soul.

“He started trying to speak and he couldn’t. He was just leaning against the doorway and I was desperately asking him, ‘what’s happened?’ When he tried to speak, saliva came out of his mouth and went down his body. I just jumped out of bed and grabbed him and looked at his face. I thought he’d had a seizure, that he’d banged his head. He was trying to speak and he couldn’t, and I just lifted his hand and it went straight back down. I said to him: ‘you’ve had a stroke’.

“It felt like a million years, but it was only about six minutes for the paramedics to arrive, and I told them he was having a stroke. They told me no, he can’t be, he’s 29. They said it’s probably a reaction to some medication he’s taking. I said I don’t think it is.

“We were told he had a hole in his heart, he had a patent foramen ovale (PFO). The doctors said that a third of his brain was affected from the stroke and that he would need rehabilitation.

“But the stark reality is the aftercare after a stroke isn’t the right fit for young sufferers. There is not enough support to get back to everyday life.

“He felt quite excluded from his friendship group when he first had the stroke. Everyone was scared going to see him, like he was going to be a different person. Because he couldn’t read or write, and he couldn’t speak as his speech therapy had been stopped, he couldn’t express what he wanted to say. He was out of the loop.

“Everyone that Chris was put in touch with for support were retired. Chris told them that he didn’t want to retire but they were all asking him why he wanted to go back to work so soon. He told them: ‘it’s my life, I’m only 30’.

“And it soon became apparent that both of us needed a different kind of support, real-world support, to get our lives back on track. You need this to give you hope.

“There was no face-to-face couples therapy as we couldn’t afford it or we were told it wasn’t available.

Chris and Hannah standing together“We separated in November.

“We bought our first house when we were 22 but ten years later things had changed. I think you’ll never know if you would still be together if this hadn't happened.

“We are both sad that it’s ended this way, but the fact is we have been able to work our way through it, in a way that is quite adult for people that aren’t that old.

“I think he’s happy not being bitter about everything. We had couple’s therapy in the end, and it helped us to be more amicable.

“It is hard for both of us. We still love each other, and I will never not love him because we have been through so much, like no one else. Only we know.

“We still love each other, we just can’t be together right now."

 

Chris's story

“I woke up in hospital and thought I would get better quickly, that it was just a hiccup.

“I never thought that 5 years later I would be having speech therapy and still trying to get words out. With reading and writing, it’s not that I have exactly given up… but I have tried so much, even reading kids’ books, and I now have to rely on tech to read a little text at a time.

“In the first couple of months, I went back to football and I spoke to people. I could say maybe 5 or 10 words. I just said to them “I can’t speak”.

“I was doing really well with NHS speech therapy – but 9 months later it just stopped. They told me I should have only had 3 months of support. Even with 9 months of support I could only speak 20 words and couldn’t say a proper sentence.

“So, I couldn’t do any speech therapy, I couldn’t work, I couldn’t say any sentences. I really struggled for well over a year to communicate before finding someone else who could help me.

“I felt depressed. Everyone our age works so it’s not like you can see people. I was desperate to get up and running again.

“With therapy for mental health after the trauma, there was nothing. I eventually went to the GP for mental health therapy but my speech therapy had stopped and it was difficult as I couldn’t speak, so it was hard to outline how I was feeling. There was no support or any discussion on why it happened it was “just live your life”.

“For me, I like a structure. When I am not working, I need to find something to do. It was okay for a couple of months, but that time goes on and I couldn’t work, I couldn’t speak, I just had to sleep. It’s frustrating you can’t get your life back. There is no time measure on it to say how long it could take, I didn’t have anything I could do, I couldn’t even read. My life had been about building and I needed to talk to people.

“I lost all my confidence and it took me time to get out and about. I didn’t want to go out, to talk to people. It was about a year I felt like that. The only reason I went out was to walk the dog and that was it for half an hour.

“I went to a stroke group but there was a 30-to-40-year age difference and the conversations were so different. And that’s the issue. There needs to be support for the individual after a stroke. It’s always going to be different depending on the age and the need.

Chris standing in from of a cruise boat“Couple’s therapy is also essential. It’s so important for the survivor’s carer and loved one. I think it hurt her (Hannah) more than it hurt me. It was essential in the beginning – there was no therapy for 5/6 years, the relationship was struggling, the carer is doing literally everything. I couldn’t even do shopping as I didn’t like leaving the house.

I was trying to find support for a good couple of years before I managed to find a specialist day rehabilitation service for adults who have had an acquired brain injury. My parents also set up a framing business to give me a job but not everyone would have that luxury. I am really grateful they did that as that was the start of getting back, but not many people can do that.

“I was told that I didn’t need to work but my speech was much better when I could. I’m now talking 8 hours a day for my job and feel I have managed to get back to where I needed to be. But I have had to do that on my own and thankfully I had the support of my family and friends.”

 

'Young survivors are abandoned when they leave hospital'

Jenny Clarke MBE, CEO of SameYou, says there is a misconception that stroke is seen as a disease of the elderly. And for a young stroke survivor, there is often a battle to get the help they so desperately need, especially if they have suffered a mild to moderate stroke as the issues may be invisible – and it can seriously affect their mental health. 

She adds: “Young stroke survivors are being set up to fail by abandoning them when they leave hospital. It’s back home where the hard work, frustration, fear and the challenges really begin with little or no support to rebuild their lives. 

“There is a great unmet need and a gap in service provision which can have major implications for a young adult who may want to stay in employment, socialise with friends and be independent. That support pathway just doesn’t really exist.

“In terms of what we are advocating for, there needs to be specific solutions available to help this cohort. This includes sharing information about what has happened to them and an immediate plan for their recovery. They need essential mental health support and the opportunity to access enhanced recovery services to give them the vital tools to be well and live fully. 

“There is a massive gap between what survivors and their families say they need and want, and what is currently being offered. Rehabilitation is undervalued and under-prioritised and that’s clearly got to change as a key component of universal health coverage. The situation at the moment is, quite frankly, frightening and we are letting young survivors down.”

SameYou works with powerful partners globally to develop better mental health recovery innovations for survivors and lead vital research into brain injury.

This includes partnering with leading academics and rehabilitation services to find new ways of augmenting the workforce and providing education and training for clinicians and the public. It also empowers survivors with a range of self-help tools, including return to work solutions, and it advocates for improvements in recovery provision. 

SameYou’s mission is for brain injury survivors to know they haven’t lost the person they were before. 

 

Hannah standing with her bike at the cycling eventHannah turned to SameYou, a brain injury recovery charity that works to develop better mental health treatments for survivors and their families, for support after Chris’s brain trauma. She supported its SameChat scheme, a programme that provides peer support for survivors and their loved ones.

In April, she is leading a team of cyclists and hikers to Ibiza for a fundraising challenge for the charity. The charity’s vision is to create a specialist, first-of-its-kind mental health pathway for survivors of brain injury and their families. See sameyou.org

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