Life Without Communication

Stroke Association shares survey to mark Aphasia Awareness Month

The fear of being unable to communicate has been laid bare in a new survey of over 163 people across Scotland. Research conducted by the Stroke Association reveals that more than a third of the respondents (36%) can’t imagine living in a world where they couldn’t communicate. 

A world without communication is an everyday reality for the 350,000 stroke survivors like Tom Middlemass (61), from Edinburgh, in the UK living with aphasia – a communication disability, which is most commonly caused by stroke. 

The research has been carried out by the Stroke Association to mark Aphasia Awareness Month and to encourage stroke survivors living with aphasia to use the information and support that’s available from the charity so they can navigate the challenges aphasia brings. 

Aphasia can affect a person’s ability to speak, read, write and use numbers, but it does not affect intellect.

The charity’s latest survey also reveals people’s biggest fears if they lost their ability to communicate:

  • Over a fifth (23%) of people feared not being able to carry out everyday activities
  • Over a quarter (26%) of people feared how it would affect their relationships with family and loved ones                   
  • Around one in five people (23%) feared being lonely
  • 10% feared not being able to express their emotions
  • 6% feared losing their job.
  • 4% feared l losing their friends.

Tom Middlemass from Edinburgh had a stroke at the age of 52 in 2016.  He couldn’t move or speak at first. At the time, he had an overwhelming instinct to get up off the floor, but couldn’t make himself understood. 

Tom says: “It took three weeks for me to be understood properly and it was scary. I used a pen and paper at first to write down what I wanted to say and felt stupid not being able to get the words out. 

“Shopping was a challenge as I found numbers hard to understand.  I couldn’t socialise with friends, or go to the football with my daughters, I just felt embarrassed and unable to cope. Having relied on meeting in person and talking face to face, it was impossible to do so now.” 

Thankfully, Tom is now mobile and able to talk. He volunteers for the Stroke Association, which allows him to give hope to others. Tom believes that there can be life after stroke and it can be good again. 

He adds: “I would encourage everyone with aphasia to seek help. Find information, get advice and use the tools and services which charities like the Stroke Association provide, to help you with your recovery.”

The charity’s survey also highlighted how vital communication is to our everyday lives:

  • Over half (52%) of people said they rely most on meeting face to face or talking in person 
  • Just under one in five people (19%) rely on email, text or instant messaging
  • Under one in ten (7%) depend upon talking on the phone 
  • Under one in ten (6%) rely most on reading for work or leisure.

For many stroke survivors with aphasia, these commonly used communication tools are either a challenge or impossible to use.

John Watson, Associate Director Scotland of the Stroke Association said: “Aphasia is incredibly common after stroke, affecting one in three stroke survivors.  It robs you of the ability to talk to loved ones, to do everyday tasks such as go shopping, use public services or get online – things we all take for granted. People with aphasia often feel lonely and isolated too, which can impact their relationships.

“But there is hope and the brain can recover and adapt. Stroke survivors with aphasia can make improvements as well as developing alternative ways of communicating.

“Get in touch with the Stroke Association to find out how we can help. We’re here to support people with aphasia to rebuild their lives and to regain their confidence and independence.

“Our ‘Getting Online for People with Aphasia‘ guide equips you with the skills you need to get online, keep in touch with family and friends and to connect with the stroke community. Support is also available through our stroke support groups, My Stroke Guide and communication support service.

“It’s also incredibly important for the public to be aware of what aphasia is, the things to look out for and to learn strategies that might help those with aphasia living in their community. We all have a part to play in adapting our communication to be inclusive for all.”

If you or someone you know is living with aphasia, visit stroke.org.uk/aphasia for information and support.

The ‘Getting Online for People with Aphasia’ guide is available at: www.stroke.org.uk/aphasiaonline 

My Stroke Guide is available at: https://www.stroke.org.uk/finding-support/my-stroke-guide

Letters: Stroke charity and Royalty thank volunteers this Thank You Day

Dear Editor,

I am delighted to be able to say a huge thank you to the hundreds of wonderful Stroke Association volunteers this Thank You Day 2022. 

The annual Thank You Day, which takes place on Sunday 5 June, is extra special this year, as it coincides with the Queen’s Platinum Jubilee weekend where the nation will stop to celebrate 70 years of service by Her Majesty, the Queen.

To all our volunteers, you make a huge difference to thousands of stroke survivors and their families by sharing your stories, providing information and support through services and stroke groups, promoting stroke in local communities, fundraising, and campaigning for change. 

I’m also delighted to pass on the best wishes of The Duke of Kent, who is also President of the Stroke Association:

On this Thank You Day, it is an honour to be able to say a huge thank you to every one of the fantastic volunteers at the Stroke Association.

This special weekend, as we celebrate the Platinum Jubilee, it is fitting to also take time to recognise the service of the amazing volunteers who are supporting stroke survivors and their families every day as they rebuild their lives after stroke.

We are inspired by your dedication, commitment and care towards others, particularly those volunteers who have been so badly affected by stroke themselves.

My best wishes and thanks to you all.”

So it’s a huge thank you from me and everyone at the Stroke Association. Thank you for giving hope to thousands of stroke survivors and their carers and supporting them with their recoveries – You’re amazing! 

Juliet Bouverie, OBE

Chief Executive of the Stroke Association

Stroke Association responds to latest Public Health Scotland figures

Responding to Public Health Scotland’s latest stroke statistics, John Watson, Associate Director Scotland of the Stroke Association, said: “The latest stroke figures reinforce what the Stroke Association has repeatedly said – that stroke has a huge impact on the health and social care landscape in Scotland, and those who live in the poorest parts of our country are the most adveresly affected.  

“The health and social burden of stroke falls most heavily on certain groups. The death rate for cerebrovascular disease in the most deprived areas in 2020 was 43% higher than in our least deprived areas.  

“Stroke remains Scotland’s fourth biggest killer. More than 128 000 Scots are living with the effects of their stroke. The need for improvements in stroke prevention, treatment and care is urgent and recognised by the Scottish Government. 

“We await the imminent publication of the Scottish Government’s vision report outlining a new progressive stroke service for Scotland.

“We then expect a Stroke Action Plan to follow that quickly – outlining how the vision is to be delivered in Health Boards and communities across Scotland.”

Nine out of ten stroke survivors would warn their younger self to change their lifestyle

Nine out of ten stroke survivors in Scotland would warn their younger self to change their lifestyle, according to Stroke Association survey

Nine out of ten stroke survivors would go back in time and urge their younger self to make lifestyle changes which may have prevented their stroke, a new UK-wide survey by the Stroke Association has revealed.

More than four out of five people surveyed in Scotland, say they hadn’t realised that they were at risk of a stroke. 

But nine out of ten had since made lifestyle changes. This is important to the two in five people who may go on to have a second stroke.

The charity has released the findings to mark Stroke Prevention Day, on Friday 14 January, and is urging everyone to make one small change to reduce their own risk of stroke. 

Stroke is one of the leading causes of adult disability and the fourth biggest cause of death in the UK.  While some strokes are unavoidable, up to nine out of ten are linked to lifestyle and could be preventable if people are aware of the risks and able to make changes.

Alexander Mackenzie, 61, from Edinburgh had his stroke in Feb 2020.  He was told the stroke had almost definitely been caused by high blood pressure.  

He said: “The stroke affected the right hand side of my body.  I couldn’t use my hand at all – it just ‘froze’, I couldn’t walk and my speech was slurred.  I wasn’t able to write either.  My speech gradually returned to normal within three to four months.  It took two months before I could walk, but my sense of balance is still affected.  

“I knew high blood pressure was something that needed to be watched, but I never suspected it was what had most likely caused my stroke.

“My lifestyle could have been better.  Looking back, I drank too much – nearly every night.  It interfered with my energy levels and mood – it wasn’t good at all.  And now, having gone through the shock of a stroke, I have given up drinking completely and it’s had a major impact on my health. 

“I sleep properly and make better use of my time.  I am more optimistic about the future and believe there are exciting opportunities ahead.

“I regret the amount I drank. My lifestyle was getting in the way of a good life and in a sense, my body ‘gave up’. 

“I wouldn’t wish a stroke on anyone.  It plays havoc with your life.  Knowing what I do now, I wish I’d known just how important managing your blood pressure is and taking steps to reduce your risk of stroke.” 

The leading change survivors would urge their younger self to make, would be to reduce stress levels with 49% saying they would have done this. Other changes stroke survivors would have made include:

  • Monitor blood pressure – 42%
  • Exercise more – 34%
  • Eat more healthily – 32%
  • Lose a set amount of weight (for example one stone or ten kilograms) – 32%
  • Stop smoking – 24%
  • Drink less alcohol – 21 %
  • Reduce salt intake – 20%
  • Monitor high cholesterol – 19%

As a first step, the Stroke Association wants people to make one small change to reduce their risk of stroke, starting on Stroke Prevention Day.

Examples include:

  • Having your blood pressure, cholesterol and pulse checked regularly
  • Stopping smoking
  • Having a number of alcohol-free days each week
  • Changing your diet to include less salt or switching to a reduced sodium alternative such as LoSalt®
  • Eating more fruit and vegetables
  • Getting up and moving regularly during the day, especially if you’re working from home
  • Joining an online exercise or activity group, or better still, taking on the charity’s Stride for Stroke challenge – one step for each of the 1.3 million stroke survivors in the UK.    

John Watson, Associate Director Scotland at the Stroke Association said: “A stroke happens in the brain, the control centre for who we are and what we can do. It can happen at any time and at any age and can be devastating.

“We know not all strokes are avoidable, but as many as nine out of ten strokes could be prevented as they are linked to things you can change or manage.  Many people simply don’t realise they are at risk and that’s something that we as a charity desperately want to put right.  

“The effects of a stroke can be life-changing for you and your family, so why not do all you can to avoid one yourself?

“However, we know that it isn’t always easy, so pick something that’s manageable for you. Aim to stick with it for an initial three months and, if you can do that, you’re more likely to form a regular habit.

“The good news from this research is that almost nine out of ten stroke survivors have already taken steps to reduce their risk of having another stroke.”

The charity’s campaign has been launched in partnership with LoSalt®.Almost a third of stroke survivors said they would exercise more and an ideal way to motivate yourself is to sign up for the Stride for Stroke challenge.

Find out about this and the other things you can do at www.stroke.org.uk/stroke-prevention-day. Money raised will help the charity’s work supporting stroke survivors and carers across the UK.

Stroke Association warns number of untreated strokes likely to rise due to rise in Omicron cases

The UK’s largest stroke charity is warning people not to delay seeking treatment for stroke due to fear of Omicron

The Stroke Association is concerned that public fear of increasing COVID-19 rates, due to the Omicron variant, is likely to see a similar drop in stroke admissions seen in Scotland at the start of the pandemic. 

During the first wave of the pandemic there was a significant decrease in admissions to stroke wards, when the COVID-19 infection rate rose rapidly. The Stroke Association’s Recoveries at Risk report found this was due to patient worries over catching COVID-19 or being a burden on the NHS. Nearly a third (32%) of people who survived a stroke between March and June 2020 said they delayed seeking medical attention due to COVID-19.

This year, with the added impact of reported ambulance delays, this is likely to intensify feelings of being a burden on the NHS, causing people to delay seeking medical treatment.

To add to this potential crisis, new data shows that this year, more people are living with unmanaged hypertension (high blood pressure) and other major stroke risk factors due to fewer regular in-person appointments where cardiovascular conditions (like high blood pressure) are spotted.

Hypertension is the biggest risk factor for stroke, contributing to 55.4% of stroke cases. This means that the stroke rate could rise this Christmas as more people live with unmanaged hypertension than in previous years.

In Scotland there are almost 10,000 strokes a year and 128,000 stroke survivors. A stroke is a medical emergency which is caused by a blockage or bleed in the brain cutting off blood supply. Stroke is fatal in over one in seven (15 %) patients.

The main treatments for stroke, thrombolysis and thrombectomy, must be delivered as soon as possible within four and a half hours of symptoms starting, which is why is it vital to call 999 as soon as any sign of stroke appears. Stroke is the UK’s fourth biggest killer and the leading cause of adult disability.

Key stats:

  • Of those who delayed seeking emergency medical attention, 42% hadn’t wanted to burden emergency services
  • And 34% of those who delayed seeking emergency medical attention were afraid of catching COVID-19 in hospital.

John Watson, Associate Director Scotland of the Stroke Association said: “When COVID cases rise as quickly as they are doing now, that sets off alarm bells at our charity and everyone involved in the treatment of stroke. More Omicron cases is likely to mean more preventable deaths and disability due to stroke, as people delay seeking emergency medical attention.

“We know that people get scared to go to hospital when cases rise but stroke is a life-threatening condition. Fear of catching COVID and feeling like a burden on the NHS stopped people calling 999 in the past. This is likely to be even worse this Christmas due to the news about ambulance delays. Stroke is an emergency medical condition and should be treated as an emergency from the moment you ring 999.

“You have to remember that stroke is a brain attack and when you see any of the FAST signs of stroke in someone, this means that their brain is dying. You must raise the alarm; you must call 999 immediately.

“After nearly two years in the pandemic we know that many people haven’t had their high blood pressure diagnosed because there haven’t been as many regular, in-person appointments with medical professionals such as GPs. That means more people are living with undetected high blood pressure and are at high risk of stroke. As a result, we could see even more people having a stroke this Christmas than in previous years.”

John continues: “Stroke clinicians and nurses as well as paramedics and therapists have worked tirelessly throughout the pandemic to maintain stroke services. Everyone at our charity is thankful for their hard work and support.”

Signs of stroke (FAST test)

Face – Can the person smile? Has their face fallen on one side?
Arms – Can the person raise both arms and keep them there?
Speech problems – Can the person speak clearly and understand what you say? Is their speech slurred?
Time – If you see any single one of these signs, it’s time to call 999

Letter: Stride for Stroke challenge

Dear Editor

Like so many others, stroke has left a really devastating legacy on my family. My dad died of a stroke and his dad, my grandfather, had a major stroke which left him unable to speak again. 

But many people don’t realise that the vast majority of strokes – around 80-90% in fact – are preventable, which is why I’m supporting the Stroke Association’s Stride for Stroke campaign as my New Year’s resolution.  

I exercise regularly, try to eat healthily and keep an eye on my blood pressure, which are all ways to help lower your risk of stroke – but there’s more we can all do…

So this year, the charity is challenging everyone who cares about this devastating condition, and who is able to do so to walk 10,000 steps a day for 130 days. If that’s something you could do, that would add up to 1.3million steps, one for every stroke survivor in the UK.

Stroke strikes every five minutes in the UK and it changes lives in an instant. However, with our support, the Stroke Association can help more stroke survivors and their families find hope and rebuild their lives.

So come on, if you’re looking for a New Year’s resolution that will make a huge difference, why not take on the Stride for Stroke challenge? Sign up today at www.stroke.org.uk/stride   

Thank you and Happy New Year,

Vogue Williams

Hope ‘critical to recovery’ after a stroke

Hope after a stroke: Nearly a quarter of stroke survivors lost their job after their stroke with some even losing their home or partner – but having ‘hope’ is critical to recovery 

  • 23% of stroke survivors in Scotland say having a stroke cost them their job, with almost one in five saying it impacted their relationship and 5% even lost their home
  • Across the UK, over half of younger stroke survivors under the age of 50 say they have never emotionally recovered from their stoke 
  • Whilst 15% felt their first signs of hope after a month since having a stroke –a quarter did not feel any hope in over a year.
  • The Stroke Association calls for those who can to donate to give more survivors hope after a stroke

The practical, emotional and physical impact of having a stroke has been laid bare by a new survey of over 3,500 stroke survivors across the UK (220 respondents from Scotland), released today.

The research, conducted by the Stroke Association ahead of World Stroke Day (29 October), is part of a renewed call for vital funds to help the charity give more survivors hope after their stroke and help them to rebuild their lives. 

The impact on survivors in Scotland

The research reveals that 23% of those in Scotland who survived a stroke say it directly led to them losing their job whilst 5% say it led to them losing their home. 

Furthermore, almost one in five (19%) say it had a negative impact on their relationship.  It is not only relationships with partners that are affected – over one in ten (12%) say they lost friends as a result of having a stroke.  

Younger survivors more severely impacted

Looking at stroke survivors across the UK, the research reveals that the emotional impact of a stroke can impact younger survivors more severely. Amongst those under the age of 50, six in ten (60%) say that they’ve never emotionally recovered from the impact of their stroke. This compares to 44% for those over the age of 50. 

This is despite a similar number of younger stroke survivors under the age of 50 (52%) and over the age of 50 (50%) saying they have not physically recovered from their stroke. 

The importance of hope 

The research shows the importance and transformative power of feeling hope after having a stroke. Over three quarters of those surveyed in Scotland (77%) say that hope played an important or critical part in their recovery. 

But for many, it was not a quick process. Whilst 15% say they began to feel hope after a month since their stroke, a quarter (25%) say it took more than a year to experience what they felt was the first sign of hope. Meanwhile one in ten (11%) say they have never felt hopeful since they had their stroke – demonstrating how strokes can impact survivors differently. 

The Stroke Association helps people to find the hope they need to rebuild their lives through specialist services, including a Helpline, peer support service, support groups and Support Coordinators.

Louise Copland, 36 from Glasgow, had her stroke six years ago.  The effects of her stroke were dramatic.  She couldn’t walk or talk.   

She said: “At the time I was terrified, I had no idea what was going on, but I got the impression it was a big deal, which made me very anxious.

My family and the physiotherapists were marvellous.  I’ll never forget standing up for the first time.  It felt weird and I was dizzy, but it was exhilarating. I had to call my parents to give them this fantastic news and they immediately got in the car to go to the hospital and share my happiness and excitement.  This was my first moment of hope that there might be light at the end of the tunnel.

I was due to get married two months later and was determined to walk down the aisle with Dad. I focused all my attention on being able to walk again. I did it.  This was the biggest moment of hope I’ve had since my stroke and it gave me the impetus to carry on.

But Louise knows she probably won’t ever recover emotionally after her stroke.

“I wake up every morning with an arm and leg that don’t work like the way they did.  I fear the challenges in forming new relationships – my confidence has been dashed and people do judge you for having a disability which is demeaning.

Louise continues to find moments of hope and lives her life to the full.  She would have been lost without the support of friends and family.  She now attends a stroke club where she gets to meet others in a similar situation to herself.

“The people I meet at the café are so welcoming.  They understand the issues I’m dealing with, because they are dealing with them too.  It’s important to find hope in others.  It’s important to ask for help when you need it and it is out there.  There is hope after stroke.”

Big and small moments of hope

The research found that it can be both big and small moments of hope that are important. When asked what gave them their first moment of hope after a stroke, nearly one in five, (19%) said it was being able to use their affected side for the first time and 11% said it was being able to speak again. However, one in ten (10%) said it was being able to complete a small every day task such as making a cup of tea.  

Reevaluating what is important after a stroke 

The impact of a stroke leads many to reevaluate what is important in life. Over half (54%) say having a stroke made them appreciate their life more, 43% say it made them appreciate their family more and 42% say it made them appreciate the importance of looking after their health.  

John Watson, Associate Director Scotland at the Stroke Association said: “Every five minutes, someone in the UK will have a stroke and, in a flash, their life is changed.

“There are more than 128,000 stroke survivors living in Scotland and 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 1.3m 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.”

The Stroke Association is asking those who can to donate today so that it can reach more stroke survivors and give them the specialist support they need to find hope and move forward with their recovery. Visit stroke.org.uk/hopeafterstroke  

Join Team Stroke for Kiltwalk

Sunday 26 September in Glasgow 

The Stroke Association is calling on you to take part in a walking challenge to support the thousands of stroke survivors living with the devastating effects of stroke. The Kiltwalk takes place on Sunday 26 September from Glasgow Green at 11am

Amanda Potter from Greenock said: “I decided to take part in Kiltwalk this year as it is something I have not yet taken part in when fundraising for a charity. I have previously taken part in the Stroke Association’s Resolution Run in 2019 after my mum had a stroke in August 2018 at only 52 years old.

“Without the money raised through fundraising, there would have been no treatment for my mum to continue to live her life again.

“I’m super excited to be taking part in Kiltwalk this year with some of my work colleagues and help raise awareness and money for a great cause!”

The walk is open to anyone from Scotland. Participants can take part by undertaking The  Mighty Stride of 16.5 miles or the Wee Wander of 3.5 miles.  

Andrea Watt, Fundraiser for the North of Scotland said: “Be a Kiltwalk hero in 2021 and join Team Stroke! All Kiltwalk fundraising for the Stroke Association gets a massive 50% boost from The Hunter Foundation.

So why not take on the challenge as a family or maybe a team effort with your work colleagues? Whatever you want to do! We hope to see you there!

Sign up at www.thekiltwalk.co.uk and select Stroke Association as your chosen charity.

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