Stroke Association responds to Improvent Programme report

The Stroke Association has responded to Public Health Scotland’s Scottish Stroke Improvement Programme report 2021 which was published this week.

John Watson, Director Scotland of the Stroke Association said: “Two things leapt out to me in reading “The Scottish Stroke Improvement Programme annual report 2021″ launched today.

“First of all I am struck by how well stroke care teams around Scotland have managed to maintain specialist care and treatment to patients, in the face of unprecedented challenges.  Those teams deserve our thanks and respect.

“Of more concern was the reduction in the number of people coming into hospital with the signs of stroke. Although we are not fully sure why this is the case, it is presumed in this report that it has been due to a fear of hospital admission – likely due to hesitancy and fear of contracting COVID-19.

“This is a concern to us because stroke is a medical emergency and it’s essential to call 999 straight away if you suspect you or someone around you is having a stroke.  

“We continue to urge the public to use the world-famous stroke acronym, “FAST”, to familiarise themselves with the signs and symptoms of a stroke: Face, Arms, Speech and Time (to call an ambulance) – Act FAST.  

“FAST remains an important message that both we and others continue to promote.  

“The Scottish Government recognised pre-pandemic that stroke needed significant improvement and made welcome commitments towards that.  We are pleased to see increasing awareness of the signs of a stroke is included, alongside commitments relating to improved hospital care. We look forward to seeing further progress on those commitments in the coming months.”

For more information on FAST, go to: https://www.stroke.org.uk/what-is-stroke/what-are-the-symptoms-of-stroke

A link to the summary and full report:

https://publichealthscotland.scot/publications/scottish-stroke-improvement-programme/scottish-stroke-improvement-programme-2021-national-report/

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 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, 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. 

“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 – he knows only too well the burden of stroke and gaps in stroke research that matter to people affected by stroke.

Andy 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  

Michael Johnson: Save Stroke Research appeal

Olympic sprinter Michael Johnson lends support to save stroke research

Legendary athlete Michael Johnson is calling for people to support the Stroke Association and help save stroke research, so that stroke survivors can live their best life possible.

The four-time Olympic sprint champion had a stroke at just 50 years old. In peak physical health, a stroke was the last thing on Michael’s mind as he completed his daily work out. Michael recalls experiencing unusual physical sensations – involuntary movement of his left foot, numbness, and a tingling sensation in his left arm. A CT scan and MRI confirmed he’d had a stroke. 

He said: “I’d been able to get off my bed and on to the MRI table myself, but when the MRI ended 30 minutes later, I could no longer walk. I couldn’t stand or put any weight on my left leg. The numbness in my left arm had increased significantly and I couldn’t feel the two smallest fingers of my left hand. My foot was completely numb.

Michael went from being the fastest man in the world, to needing to learn how to walk again. He began by working on his strength, power and fine motor skills on his left side. He knew from his sporting success that the best progress often comes in small, incremental steps. 

He credits advancements in research, coupled with his own focus and determination, as key to his recovery: “Research drives improvement in stroke treatment and care, so more people like me can rebuild their lives. Without research I wouldn’t have been able to make anywhere near the recovery I have.”

Stroke is a sudden brain attack and strikes every five minutes in the UK. As a result of the pandemic, the Stroke Association has had to halve its budget for research into stroke, meaning important research that can transform stroke treatment and care is at risk. 

Dr Rubina Ahmed, Research Director at the Stroke Association, said: “Stroke is a leading cause of adult disability in the UK and the second biggest killer in the world. The pandemic has shattered our fundraised income and is threatening research that drives life-changing breakthroughs in stroke care. 

“Research improves treatment and care for people affected by stroke so they can live their best lives possible, and that’s why stroke research is worth saving. Now more than ever, we need the public’s support. If you can, please help us find a way through the research funding crisis by donating today, so that we can fund more life-saving research.” 

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK, and has been at the centre of breakthroughs into life-saving treatments such as thrombectomy, and research which led to the use of the FAST test. 

Research helps stroke survivors rebuild their lives by driving improvements in treatment and care, but the pandemic has hit research hard. By saving stroke research, more stroke survivors can live life to the full.  

Find out how stroke research helps rebuild lives: stroke.org.uk/rebuildinglives

Or to donate, please visit: stroke.org.uk/saveresearch

Charity funds first study into long-term impact of Covid-19 on stroke

The Stroke Association is funding the world’s first study to determine the long-term impact of Covid-19 on stroke survivors. 

Since the start of the Covid-19 pandemic there have been widespread reports of adults with the virus also having strokes. The charity announces this new study today, amid concerns that the virus may be causing more severe strokes in patients whom doctors are struggling to treat.  

It is thought that the virus could be increasing the chance of blood clots forming in the brain and blocking blood flow.

The Stroke Association is funding this vital research to investigate the difference the virus could make to stroke recoveries, which are already at risk due to disruption to stroke services caused by the pandemic.  

The study will establish which differences in patients with and without the virus may influence their needs for treatment and care, including how to avoid the risk of having further strokes. 

Researchers at University College London Hospitals NHS Foundation Trust (UCLH) led by Dr Richard Perry will follow up to 4,000 stroke survivors, with and without Covid-19 from across 13 emergency stroke units. 

Stroke recovery, rehabilitation and health will be tracked for up to 18 months after their stroke. Researchers will collect and assess comprehensive, specialist medical information from stroke patients, including brain scans, blood samples and measures of disability. 

The findings will help to understand how Covid-19 impacts stroke recovery and which treatments might best support survivors’ recoveries. 

Dr Terry Quinn at the University of Glasgow works with the UCLH team on their Covid-19 and stroke research. Hhe said: “Research that compares stroke in patients with and without Covid-19 is essential to understand if Covid-19 results in more severe strokes, where survivors will need more support to recover from its devastating effects. 

“From the beginning of the pandemic, I would see patients admitted with unusual strokes, who would then go on to have a positive Covid-19 test. This vital research will help us understand why this happens.  

“The findings from this year-long study will inform decisions about the most effective treatment and the rehabilitation needs of this group of patients, including prevention of recurrent stroke. We already know that from the moment a person has a stroke or mini-stroke they are at substantial increased risk of further strokes. 

“We’ve come a long way since the start of the pandemic. In the early days of the pandemic, stroke teams from across the UK came together to share their experiences and data. I was part of this collaborative activity and the exchange of information was crucial for delivering the best possible stroke care.

“This work had no external support and was reliant on busy clinicians giving up their time.  Stroke clinicians will continue to engage with the new project, but the Stroke Association funding will allow us to achieve things that would not be possible without this support.” 

Stroke is a sudden brain attack, stroke strikes every five minutes in the UK, and there are more than 128,000 stroke survivors living in Scotland. It’s estimated there will be around 173,000 by 2035.  

Dr Rubina Ahmed, Research Director at the Stroke Association, said: “Stroke is a leading cause of adult disability in the UK and the second biggest killer in the world. It’s extremely concerning that we’re seeing strokes happening in ways we have not seen before.

“This research is absolutely critical in understanding and treating stroke after Covid-19, to help reduce the devastating effects and ultimately improve lives. Covid-19 is here to stay, so it’s vital we can prevent and treat strokes linked with the virus. 

“The pandemic has shattered our fundraised income and is threatening research that drives life-changing breakthroughs in stroke care. As a result of the pandemic, we have had to halve our budget for stroke research. 

“Research improves treatment and care for people affected by stroke so they can live their best lives possible, and that’s why stroke research is worth saving. Now more than ever, we need the public’s support. If you can, please help us find a way through the research funding crisis by donating today, so that we can fund more life-saving research.”  

In February, the Stroke Association announced the world’s largest study to confirm if Covid-19 increases the risk of stroke and by how much. Together with the new research announced today, the two studies will help doctors to prevent and best treat Covid-19 strokes in the people who are most at risk.  

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. Research helps stroke survivors rebuild their lives, but the pandemic has hit research hard. By saving stroke research, more sure stroke survivors can live life to the full. 

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

Letters: Walk To Remember

Dear Editor,

Stroke really is such a cruel condition. Sadly we have all heard of someone who has been affected by stroke and many people like me have tragically lost someone too.

Almost five years ago my wonderful Mum, Diana, suffered a severe stroke. She died four weeks later. My Mum was the most active, ‘full of life’ person I knew. She LOVED life. She was my best friend and I miss her every day.

That’s why I want to ask your readers to take part in the Stroke Association’s, A Walk to Remember.

This wonderful event is a special way to celebrate the life of your loved one whilst raising money in their memory. Simply pick a special place that is filled with memories, create your route and on June 27th take part in your own walk to remember to raise funds for the Stroke Association

Stroke strikes every five minutes in the UK, and there are around 128,000 survivors in Scotland living with its devastating effects who really need our help.

Like so many charities, the pandemic has drastically affected the Stroke Association’s income. However the charity has still been supporting stroke survivors as much as they can with support and advice, while continuing to fund vital research into the condition. 

Please join me and do something amazing in your loved one’s memory by taking part in A Walk to Remember. It’s bound to be an emotional but amazing day for all of us that have lost someone to stroke.

Walk in their memory and raise funds to rebuild more lives after stroke.

To sign up, please visit – https://www.stroke.org.uk/fundraising/a-walk-to-remember

Yours sincerely,

Katherine Dow Blyton

Actress

Letters: Stroke research survey

Dear Editor

Six years ago, completely out of the blue I had a sudden and life-changing stroke. I’m not alone in this: stroke strikes every five minutes in the UK, and around 1.2 million survivors are living with its devastating effects.

Yet, despite this research into stroke is severely underfunded. Just 1% of the total UK public and third sector health research spend goes towards stroke research.

When I had my stroke I was incredibly frightened and I thought I was going to die. But three weeks later, I was out of hospital and started physiotherapy. Within months I was able to start working again. My recovery has been made possible thanks to stroke research, which continues to improve care and find new ways to rebuild lives.

The Stroke Association have launched a unique opportunity for stroke survivors, like myself, and those who care for stroke survivors, both informally and as health and social care professionals, to have our say on the future of stroke research.

Partnered with the James Lind Alliance, the charity will find out what matters to us most so research can make the biggest difference to our lives.

With such limited funds for stroke research, worsened by the Covid-19 pandemic, it’s  vital that we come together and make our voices heard. If you’re a stroke survivor, or you care for or work with someone affected by stroke, join me and speak up for stroke.

Don’t miss your chance, visit: www.stroke.org.uk/jla by the deadline of 21 March. 

Yours Sincerely,

Chris Tarrant

Radio and TV Broadcaster

Strokes caused by Covid-19 under the spotlight in world’s largest research study

The Stroke Association is funding the world’s largest research study to investigate worrying reports that Covid-19 is causing life-threatening strokes.

As Covid-19 cases continue to rise across the globe, this critical research may help to prevent Covid-19-related death and disability. The study will build on the work of the British Heart Foundation (BHF) Data Science Centre at Health Data Research UK (HDR UK).   

Announced today, the study uses health data from nearly all UK adults. Having access to large amounts of data will allow the researchers to follow the health of Covid-19 patients. Data analysts will compare stroke in patients who have tested positive for Covid-19 with patients without the virus, to confirm if Covid-19 increases risk of stroke and by how much.

The researchers will also analyse stroke risk and characteristics including age, sex, ethnicity and geography to identify which Covid-19 patients may be most at risk of stroke. Stroke risk due to Covid-19 will be compared to increases in stroke risk due to other infections and cardiovascular conditions.

Dr Rubina Ahmed, Research Director, Stroke Association said: “Stroke already strikes every five minutes and we’re extremely concerned that Covid-19 may lead to more strokes, destroying more lives.

“Equally concerning are reports that stroke patients who have Covid-19 may be younger, and experience more severe effects of stroke, including death [3]. Severe illness due to Covid-19 is a challenge enough– but it’s worrying that a deadly stroke might also be on the way. This new research can help guide the development of new treatments that can prevent life-threatening strokes.”

This research forms part of the CVD-COVID-UK flagship project consortium, which is led by the BHF Data Science Centre at HDR UK. This project consortium aims to understand the relationship between Covid-19 and cardiovascular diseases such as heart attack and stroke in the UK population.

Dr William Whiteley, Reader in neurology at the University of Edinburgh and a lead on this research said: “Covid-19 may cause stroke in some patients.  So far studies of Covid and stroke have been small. More data will improve our understanding and give a better idea of the risks of stroke after Covid-19 infection.

“With the funding of the Stroke Association and access to the data and research community brought together by the BHF Data Science Centre, the team can use health information from nearly all adults in the UK.

“By working with information specialists, we’ll be able to accurately detect even the smallest increase in risk of stroke across different groups of people. We’re incredibly grateful to have the support of charities to help get this urgent research underway, so that we can better inform patients and health care professionals about Covid-19 and risk of stroke.”

Dr Rubina Ahmed continues: “We will be living with Covid-19 for the foreseeable future and we don’t want to see the pandemic leave more deadly strokes in its wake. Stroke is a leading cause of adult disability in the UK and the second biggest killer in the world.

“This research is crucial to our understanding of Covid-19 and strokes, but this is just the tip of the iceberg. The Covid-19 pandemic has had a devastating impact on our income and is threatening life-saving breakthroughs. Now more than ever, we need the public’s support. If you can, please help us find a way through the research funding crisis by donating today, so that we can fund more life-saving research.”  

Juliet Bouverie, Chief Executive of the Stroke said: “We’ve been supporting stroke survivors throughout the pandemic through our Helpline and our Stroke Association Connect and Here For You services.

“Strokes changes lives in an instant and stroke survivors need support to recover, cope and adapt and those with Covid-19 may have additional needs. We need to be prepared with new knowledge about links between Covid-19 and stroke to support people affected by stroke long into the future.”

Prof Cathie Sudlow, Director of the BHF Data Science Centre at Health Data Research UK said: “The BHF Data Science Centre is delighted to be providing the scientific and data access infrastructure to enable this important Stroke Association-funded research project.

“We look forward to working with and supporting Dr Whiteley and his research team as they generate insights to help people with stroke, their carers and health professionals understand the impact of Covid-19 on stroke risk, and make informed decisions about their treatment and care.”

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. This year, as a result of the pandemic the charity has had to halve its budget for stroke research.

To find out more about research funded by the charity visit stroke.org.uk/research or to donate please go to: stroke.org.uk/donate-research 

Better outcomes for stroke patients in Scotland

The first step towards a national thrombectomy service for stroke patients is underway with the launch of a pilot in the North of Scotland.

Thrombectomy is a highly skilled procedure in which blood clots are removed mechanically rather than broken down by medicines (thrombolysis). It is used to treat those with severe stroke and reduce their risk of long-term disability.

NHS Tayside developed a training programme in Mechanical Thrombectomy (MT), supported by the Scottish Government. Key staff were trained by Professor Iris Grunwald, one of the UK’s leading stroke thrombectomy interventional neuroradiologists, using advanced simulation techniques.

Initially the thrombectomy procedures in Dundee will be performed on patients in Tayside before the service is extended to patients across the North.

A fully operational 24/7 service is anticipated in Tayside by 2023, and will form part of a national network in line with the Scottish Government’s Programme for Government commitment.

In the West of Scotland, the Queen Elizabeth University Hospital campus will provide a ‘hub’ thrombectomy service for the West of Scotland by 2023, while the NHS Lothian service will also be operating from the Little France site within the same timeframe.

Health Secretary Jeane Freeman said: “Over the past 10 years, the number of people dying from stroke in Scotland has decreased by more than 35%. While this is significant progress, we can still achieve even better outcomes.

“A quality and clinically safe thrombectomy service is part of our wider commitment in this year’s Programme for Government to ensure those who experience severe stroke receive the best possible treatment and care.

“It is testament to our healthcare professions that we are now seeing this first step towards a national roll-out, despite the additional pressures placed on them during the pandemic and I want to thank them for their hard work.

“Funding will continue to be made available to other boards to develop the programme and the framework.”

Honorary consultant interventional radiologist in NHS Tayside Professor Graeme Houston said: “We are delighted to be able to launch this service to provide mechanical thrombectomy for patients in the North of Scotland.

“Thrombectomy delivers a significant benefit for some patients who have sudden onset of stroke with significantly improved outcomes and a reduced level of disability.”

Chest Heart & Stroke Scotland Chief Executive Jane-Claire Judson said: “It’s good that we are seeing tangible progress towards thrombectomies being available to stroke patients in Scotland. 

“People in Scotland must be given the best possible chance of living without disability or dependency after a stroke.  We know that at least 600 people a year in Scotland would benefit from a thrombectomy. Developing the skills to deliver this procedure is a key part of establishing the service in Scotland.

“This progress is being driven by inspirational stroke survivors campaigning for change.  Together, we will keep campaigning to make sure that this game-changing stroke treatment is available as soon as possible.”

The Stroke Association in Scotland welcomes the announcement that mechanical thrombectomy is to be made available to some Scots for the first time since 2018.

This is a long overdue but a significant first step towards delivery of a national thrombectomy service for the whole of Scotland which should be in place by 2023.

Thrombectomy is vital. Around 700 stroke patients are eligible for the procedure in Scotland each year. Patients who have a stroke caused by a large blood clot in the brain would potentially benefit from a thrombectomy procedure.

It involves inserting a catheter into an artery, usually within six hours of someone having their stroke, to remove the blood clot. This allows blood flow to resume and oxygen to reach brain tissue.

The treatment can dramatically reduce the devastating consequences of stroke such as losing the ability to walk and talk. Around one in three people who receive a thrombectomy after their stroke will be less disabled as a result, and around one in five of those who receive it will be able to function completely independently afterwards.

Andrea Cail, Director Scotland for the Stroke Association said: “Thrombectomy is a game-changing treatment, and it is good to finally have it available in Scotland again. But it is only the first step. Stroke is now a clinical priority in Scotland and restarting a thrombectomy service for those need it will be the difference between living or dying; living permanently disabled or without any disabilities at all.

“Thrombectomy is an extraordinary, highly-specialised, procedure that can save lives, reduce disability and is absolutely cost effective. One thrombectomy patient is estimated to save the NHS £47,000 over a five year period.

“We congratulate everyone involved in the North of Scotland thrombectomy planning group on making this happen. We know it’s not been easy. It has required serious commitment from everyone involved. By working together, hundreds of people affected by stroke and their families will benefit over the next few years.

“All Scots deserve the same. Thrombectomy must also be made available to the larger population centres of Glasgow and Edinburgh as soon as possible.

“We urge all those involved in developments for these next two sites to work together with purpose, and for the Scottish Government and Health Boards involved to urgently resolve or remove any barriers towards implementation and delivery.  The time it has taken and is taking Health Boards to sort this out is lengthy and unacceptable.”

Professor Rustam Al-Shahi Salman, consultant neurologist in Edinburgh and President of the British Association of Stroke Physicians, says: “Mechanical thrombectomy for acute ischaemic stroke is one of the most effective treatments in modern medicine.

“We knew this in 2015. In the last five years, about 45 people in Scotland have had this treatment, but about 700 people should have it each year. I am relieved that this dire disservice to patients with stroke is beginning to come to an end in Tayside. Patients elsewhere in Scotland deserve the same.”

Case study

Norrie Andrews, 77, from Glasgow had his stroke in Majorca last year.  Only a few days into the holiday, Anne, Norrie’s partner, had gone to check on some electricity issues they had been experiencing.  On her return, she found Norrie slumped over the side of his chair unable to talk and unable to move.  Norrie had had a massive stroke. 

He was taken to the local hospital quickly, and was administered with thrombolysis, a drug to break up the clot.  Unfortunately the thrombolysis had no effect and the doctors decided Norrie would benefit from thrombectomy. He was immediately transferred to Son Espases University Hospital in Palma.

 Anne had to give consent for Norrie to undergo thrombectomy (on his behalf.)  It felt like an endless series of questions and forms that needed answered. 

The procedure took 15 minutes and when Anne went up to the intensive care unit to see him she was amazed.  He was alert, his speech was starting to come back and some movement too. They could hardly believe how something so horrifying had turned on its head.

Norrie still had some mild impairments, but the seriousness of his disability was saved (they believe,) by thrombectomy.  And just over two weeks later, Norrie walked out of hospital without any difficulty and his speech was fine. 

Anne said: “The doctors told me that had Norrie not had thrombectomy, he would never have been out of a wheelchair or spoken again. I was so relieved to hear this and we both felt very fortunate to have been in Majorca at the time.

“After returning home, I discovered thrombectomy would not have been available at the time of Norrie’s stroke. I was amazed to think a small island like Majorca had the treatment my husband so badly needed. Norrie is now back to his old life again. 

“He walks every day and I am thrilled he has started to play golf again. He keeps his brain ticking over with puzzles, crosswords and word searches.  He’s seeing his friends now, which has lifted his spirits and I’m able to see my own friends too.

“I am thrilled to hear thrombectomy is available in Scotland now.  Stroke is a devastating illness and the disability caused by a stroke can be lifelong, destroying lives. I hope now there will be more people in Scotland making better recoveries from stroke because of thrombectomy.”

New approach to informing stroke research priorities

The Stroke Association is calling on people affected by stroke in Scotland to have their say on what stroke research should be taking place.   

There are over 14,000 strokes every year in Scotland and about 128,000 stroke survivors rebuilding their lives. For the first time, the Stroke Association is funding an ambitious new project to determine the future of stroke research.

The Stroke Association is working with stroke survivors and their carers, health and social care bodies, the James Lind Alliance, Chest, Heart and Stroke Scotland and other charities to deliver a set of priorities for stroke research that work best for the people that matter most. 

Andrea Cail, Director Scotland at the Stroke Association, said: “Stroke happens in the brain, the control centre for who we are and what we can do.  It affects people differently, it could be anything ranging from affecting speech and physical ability, to affecting your emotions and personality.

“The good news is that stroke research continues to find new treatments, and also ways to improve how we can help more people live independently in their own home, return to work and rebuild lives.  

“However, we want future stroke research to address the things that matter most to everyone affected by stroke and make the biggest difference to the lives of stroke survivors. Through this initiative we will develop a defined set of research priorities for stroke. But, if we are to be successful, we need everyone in Scotland who has been affected by stroke to engage with this project. 

“If you’re a stroke survivor, or support a loved one who has had a stroke, this is your chance to make your views and voices heard. We invite you to get involved as stroke impacts on so many people in our communities.

“Our survey is open to those closely affected by stroke, from stroke survivors and the family members who support them, to people who work with stroke survivors.”

Ruth Lyle, from Hawick who had a stroke in 2017 and is involved in the project said: “I really welcome the move the charity is making in involving people affected by stroke to come up with a set of research priorities. 

“I took an interest in being a member of the Steering Group because there are certain areas of stroke that I think we need to know more about. All those affected by stroke – not just researchers – should get the opportunity to feed into this piece of work. 

“We need to know what is important to those individuals. I would encourage people affected by stroke to get involved with the JLA project and complete this short survey to tell us what stroke issues matter most to you.”

The Stroke Association has been at the forefront of stroke research for the past 30 years. In Scotland, the charity funded early research into thrombectomy, the game-changing treatment that can gives stroke patients a better chance of living the best life they can after stroke.

The Stroke Association also continues to fund cutting-edge research in Scotland. For example, they are currently funding research into how those affected by stroke can be supported to manage their recovery more independently, as well as research looking specifically at managing the devastating effects of stroke on mental well-being, like depression and anxiety. 

Have your say for stroke and find out more about the James Lind Alliance Priority Setting Partnership at: www.stroke.org.uk/jla.

Your questions can help the Stroke Association and our partners(ii) influence stroke research and answer the questions that matter most to the people affected.

For more information and to have your say visit: www.stroke.org.uk/jla  

Get talking about the JLA PSP on social media using the #MySayforStroke 

Trapped and Terrified: Over 1 million stroke survivors’ recoveries under threat

More than one million stroke survivors live in fear of having another stroke and are scared to go out alone, leaving them afraid for their recovery in the aftermath of their stroke, according to a leading national charity.

The Stroke Association’s startling new findings show how people’s recoveries are under threat from fear itself. Continue reading Trapped and Terrified: Over 1 million stroke survivors’ recoveries under threat