People with lived experience have their say on stroke research

The Stroke Association, the UK’s leading stroke charity, is announcing the top 10 priorities for stroke research, uncovered by a rigorous study involving stroke survivors, carers and health and social care professionals in stroke. The charity’s new report – the first UK-wide project to map research priorities across the entire stroke care and treatment pathway – reveals where research can address the issues holding Stroke Association survivors back from rebuilding their lives after a devastating stroke.    

John Watson, Director Scotland of the Stroke Association said: “One in five people will have a stroke in their lifetime. Stroke happens in the brain, the control centre for who we are and what we can do. Every stroke is unique because the brain is so complex and stroke can happen in any part of it. This means there are as many different impacts of stroke as there are stroke survivors, posing a huge challenge for research. 

According to the most recent figures from the UK Medical Research Council [1], only £30m of public and charity health research spending goes on stroke. This equates to less than £25 per stroke survivor per year compared to £161 per person living with cancer [2]. 

“Despite major breakthroughs over the last 10 years, we now know where there are significant blind spots in treatment and care. These are holding people back from rebuilding their lives. With the number of people having strokes set to rise – it’s estimated that the number of stroke survivors in Scotland could rise to almost 175,000 by 2035, [3].  We must act now and invest in the research that will make the biggest difference to the lives of people affected by stroke.” 

Keen endurance athlete, Andrew (Andy) aged 48 from Perthshire had a stroke in 2019 – see appendix for full story.  He knows only too well the burden of stroke and gaps in stroke research that matter to people affected by stroke.

He said:

“Stroke research is important to me.  There are many effects of stroke including fatigue and the psychological consequences of stroke that we should know more about.  We need to involve people with lived experience of stroke in decisions around stroke priorities to inform researchers and funders about what really matters to us. We know what our difficulties are, and I believe further understanding of those difficulties is a good step towards finding treatments and solutions to enable people to live the best possible life they can.”

Over 1,400 people affected by stroke and professionals in stroke took part in the project, which was carried out in partnership with the James Lind Alliance (JLA), as well as individuals and organisations representing stroke patients, carers and professionals in stroke. 

The Stroke Association is sharing the findings as part of its new reportShaping Stroke Research to Rebuild Lives: The Stroke Priority Setting Partnership results for investment.” The report sets the agenda for stroke research and identifies the areas that most urgently need investment.  There are two lists of 10 priority areas: the first in stroke prevention and acute care, and the second in rehabilitation and long-term care, ranked in order of importance.  

The top priorities in each list are: 

  • Interventions to stop stroke. Stroke strikes every 5 minutes in the UK, but we know that most (80-90%) strokes are preventable [4]. We need increased investment in research so people can avoid the devastating effects of stroke in the first place. 
  • Understanding of, and treatment for mental and emotional problems. Three quarters of stroke survivors experience a change in their mental health [5], we need research so that people can overcome significant effects such as anxiety and depression after stroke.  

Dr Rubina Ahmed, Director of Research and Policy at the Stroke Association, said: “Charities like ours need to look for new ways to help stroke survivors with emotional, mental and communication problems. Establishing what research will make the biggest difference to stroke survivors and those caring for them is just the first step. Stroke research is severely underfunded.  Just £1 in every £100 of public and charity spend in health research is on stroke and this just isn’t enough to solve the big and complex issues caused by stroke. 

“The stroke funding crisis has been worsened by the coronavirus (Covid 19) pandemic, which has had a devastating impact on our income, halving the charity’s research budget.  Stroke research is at risk, which means recoveries of people like Andy are at risk too. Your support can fund the research that will lead to breakthroughs in treatment and care. If you can, please donate so that we can make sure more stroke survivors can rebuild their lives after stroke.  

“We would like to thank everyone who took part in this project: stroke survivors, their carers, professionals in stroke, the James Lind Alliance, the Steering Group members and our partners. By having your say for stroke, you have helped to shape stroke research to rebuild lives.” 

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. By establishing these priorities our charity can support the research that can make the biggest difference to the lives of people affected by stroke.  

Find out how stroke research helps rebuild lives at stroke.org.uk/rebuildinglives or to donate, please visit: stroke.org.uk/saveresearch 

To read the full list of priorities and the report visit: www.stroke.org.uk/psp  

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