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Laid bare: the reality for stroke survivors

Research highlights how survivors are impacted physically, mentally, emotionally and financially



The practical, emotional and physical impact of having a stroke and living with its consequences has been laid bare in new research. 

Thirty per cent of survivors aged under 60 said having a stroke cost them their job, with six per cent of people saying their situation led to them losing their home. 

Nearly a quarter – 23 per cent – said their stroke had a negative impact on their relationship with their partner, with almost one in ten of the 3,500 people surveyed saying stroke had led to the breakdown of their relationship. 

Sixty per cent of stroke survivors aged under 50 say they have never emotionally recovered from their experience, which compares to 44 per cent for older people. 

In terms of physical recovery, half of all survivors say they feel they continue to live with consequences.

The study, from the Stroke Association, gives insight into the huge challenges survivors face in all aspects of their lives. 

It also found that hope is a crucial factor in recovery, with 76 per cent of people saying it played an important part in them being able to rebuild their lives. 

While a quarter of survivors say they began to feel hope in the first month after their stroke, for 22 per cent, it took more than a year.

The importance of small and huge milestones in recovery was highlighted in the research, with 17 per cent of people saying their first moment of hope came when they were able to use their affected side for the first time, and 11 per cent said it was being able to speak again – whereas for 15 per cent of people, it was being able to complete a small everyday take like making a cup of tea. 

But for 13 per cent of people, they admit to never feeling hopeful after their stroke, showing the sad reality that many survivors face. 

The Stroke Association is a key supporter of stroke survivors, and helps them to rediscover the hope needed to rebuild their lives through specialist services including a helpline, peer support service, support groups and support coordinators.

Juliet Bouverie, chief executive of the Stroke Association, said:Every five minutes, someone in the UK will have a stroke and in a flash, their life is changed. 

“Two thirds of people who survive a stroke find themselves living with a disability. The physical impact of a stroke is severe, but for many, the emotional aspects of coming to terms with having a stroke are just as significant. 

“As the research makes clear, finding hope is a crucial part of the recovery process. Without it, recovery can seem impossible. 

“At the Stroke Association, we support and help people to find this hope, and rebuild their lives. But with 1.3million people and rising in the UK now living with the effects of a stroke, our services have never been more stretched. We urgently require the support of the public to help us continue to support stroke survivors to rebuild their lives.”


Women ‘under-represented in stroke trials for 30 years’

‘Put policy into practice so future research can address gaps in the understanding and treatment of stroke in women’



Women have been under-represented in stroke clinical trials for the past 30 years, new research has found, making it harder to interpret what the findings really mean for them. 

The study found that more than three quarters of the trials enrolled less women than the expected proportion that experience stroke in the community.

George Institute researchers looked at 281 stroke trials that had at least 100 participants and were conducted between 1990 and 2020. 

The total number of participants was 588,887, of whom 37.4 per cent were women, but the average prevalence of stroke in women across the countries included was 48 per cent. 

“It’s now time to put policy into practice so that future research can address our knowledge gaps in the understanding and treatment of stroke in women,” said study co-author Dr Katie Harris. 

While there have been studies showing varying degrees of representation of women in cardiovascular trials, this issue has only recently started to be examined in relation to stroke trials.

The greatest differences were seen in trials involving a particular type of stroke known as intracerebral haemorrhage, those where the mean age of participants was less than 70. 

Lead author Dr Cheryl Carcel, from The George Institute for Global Health and a Heart Foundation Fellow, said that while both women and men had the same one-in-four risk of experiencing a stroke in their lifetime, women were much older and in worse health at the time they have a stroke.

“These findings have implications for how women with stroke may be treated in the future, as women typically have worse functional outcomes after stroke and require more supportive care,” said Dr Carcel.

Dr Carcel said the reasons for this under-representation were complex and most likely due to a number of factors, including recruitment criteria that unintentionally exclude women like age and having other health conditions.

“Patient attitudes and beliefs can also be a factor, and there can even be a potential bias among the clinical staff conducting the study,” she said. 

“Our previous research indicated that how women were treated in hospital and whether they had been on the right medications before their stroke, could be responsible for their poorer outcomes.”

Dr Harris said that barriers and facilitators to women’s participation in stroke trials needed to be explored both at the trial and patient level to help redress the balance.

“Achieving a better gender representation in stroke trials can provide a more reliable assessment of the treatment benefits and harms, and inform treatment guideline recommendations for women affected by this serious condition,” she said.

While the United States, Canada and some European countries, adopted policies to boost the number of women in clinical trials over the course of the study, the results showed no change over this time.

“Our study suggests those efforts have clearly not translated into action,” Dr Harris added. 

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Patient story

‘I’m determined this won’t be the final chapter in my life’

Survivor Adrian Day is looking to the future with hope after having a stroke and being made redundant within a week



Having had a stroke and lost his job within a week, Adrian Day is now committed to showing others there is hope even during the bleakest of times. 

The 61-year-old had a stroke in May last year, during the height of the first wave of the COVID-19 pandemic, and only days later was told he would be made redundant. 

But after a difficult year, Adrian is now looking to the future after making strong progress in his rehabilitation, and is determined to walk his daughter down the aisle on her wedding day in 2023. 

“I’ve never felt depressed, or asked myself, ‘Why me?’ I actually consider myself lucky as haemorrhagic stroke kills more often than not but I’m still around to tell my story,” says Adrian. 

“I’m also still here for my wife and daughters and I hope all of that brings inspiration and hope to other stroke survivors.”

It was while at home during COVID lockdown that Adrian began to realise something was not right, when he felt light-headed and could no longer feel his left arm or leg. 

His wife noticed a slight droop in his face and called 999, explaining she suspected Adrian was having a stroke.

“The ambulance was on the drive in ten minutes. I was conscious and lucid throughout the stroke and I gave the paramedics as much information as possible on our way to hospital,” recalls Adrian, from Warrington. 

A CT scan soon revealed Adrian’s stroke had been caused by a bleed on the brain and he would spend three days in Whiston hospital before being transferred to Warrington hospital. 

But just one week after this, Adrian received devastating news about his job as an international development manager.

“On May, exactly one week after my stroke, and still paralysed, my boss emailed me to say that I would be redundant from May 31,” he says. 

“The world was at the start of a global pandemic, the UK was in lockdown, I had suffered a stroke, I was paralysed and had just lost my job – I couldn’t believe what was happening.”

But despite two life-changing events in the space of a few days, Adrian has stayed determined in his recovery and getting his life back on track. 

He began intensive sessions of physio and occupational therapy, while setting himself the goal of walking out of hospital by his 61st birthday. 

Now back at home and continuing his rehabilitation, Adrian wants to show others that there is hope after stroke.

“Whilst I accept that I wont be the person I was before the stroke, I’m determined that it won’t be the final chapter in my life,” he says. 

“I want to get another job, I’ve even had a few interviews and I want to drive again too.

“I knew life for me was going to be very different from now on. I was worrying about being unemployed and looking after my family. 

Adrian and his family have been supported by The Stroke Association in being able to rebuild their lives. 

“The Stroke Association spoke to my wife Carol, drafted a letter to my former employer and put me in touch with Citizens Advice,” says Adrian.

“They also offered me the opportunity to talk. They were sympathetic, they listened, offered advice and it helped, it really did.”

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Aphasia recovery to be tracked in app



An app to track and improve communication recovery for people with aphasia is being developed, inspired by a stroke survivor who wanted to monitor his progress. 

LifeCHAT is being developed to enable those with aphasia to receive therapy, set goals and monitor their progress. 

The app will incorporate speech-to-text software; two-way interactive features to link stroke survivors and families with their speech pathologist; ongoing, individualised support and feedback; and real-life, real-time monitoring and assessment.

Its development was inspired by Gopal Sinh, a study co-investigator at the University of Queensland, himself a stroke survivor who is living with aphasia. 

The smartphone app is now being co-designed with stroke survivors, their families and speech pathologists, to ensure its design is as effective and practical as possible. 

“The idea for LifeCHAT originated from discussions with Gopal, who wanted a way to track his progress and recovery,” says Dr Sarah Wallace. 

“Gopal was told by family and friends how his communication was improving during his recovery, however he wasn’t able to recognise these improvements and this affected his motivation to continue with therapy.

“LifeCHAT will allow stroke survivors to set goals, receive engaging therapy and monitor their own progress – a bit like having a fitness tracker for communication.

“We hope if stroke survivors can see and track their own improvements, they will be motivated to stick with their therapy.”

“It will be great to measure my progress and see how I am improving,” Mr Sihn said.

“It is important family are involved in designing the app as they are the first people who deal with aphasia all the time.”

More than 350,000 people in the UK alone have aphasia, and up to 40 per cent of stroke survivors globally are thought to have the language and communication disorder. 

With communication being a fundamental part of everyday life, the loss of the ability to talk to friends, send an email, read a book or pay bills can lead to depression, social isolation and family problems.

Dr Wallace said the app is being specially designed to challenge these occurrences and give tailored support. 

“LifeCHAT will use geo-location mapping to track how social interactions are going and daily questions will prompt responses about experiences and feelings,” she said.

“This information will be used to produce visual graphs to link goals with progress.

“We hope the app motivates stroke survivors with aphasia to stick with their treatment and to keep improving.”

LifeCHAT will draw on the latest world-leading aphasia treatment and research in co-design with consumers, therapy technologies and psychology to motivate adherence to treatment.

Once developed, LifeCHAT will be available within UQ’s Queensland Aphasia Research Centre Tech Hub, an online and in-person consultation service that allows consumers and clinicians to trial technology solutions.

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