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

More than one million⁽ⁱ⁾ stroke survivors (89%) live in fear of having another stroke and are scared to go out alone (79%), leaving them afraid for their recovery (79%) in the aftermath of their stroke, according to a leading national charity. The Stroke Association’s startling new findings⁽ⁱⁱ⁾ show how people’s recoveries are under threat from fear itself.

The charity’s latest research (of over 1,000 stroke survivors) also reveals the hidden barriers that people can face after stroke, often too scared to talk to anyone about:

• One in five (20%) stroke survivors said they kept their fears to themselves and didn’t talk to anyone
• Over a third (37%) of these stroke survivors said they didn’t want to worry anyone, they were too afraid (27%) or didn’t want to sound stupid (26%) by talking about their fears.

On top of dealing with these fears and concerns, the study also shows that many stroke survivors are facing their recovery alone. This leads to a bleak attitude to recovery with almost nine in ten (88%) survivors afraid they won’t get better and four out of five (80%) fearing they would get sent to a care home when they first had their stroke. Fear prevents people from getting out and about and meeting others, two of the key factors that stroke survivors have said are integral to their recovery.

Niall Woods (29) lives in South Belfast and had a stroke when he was just 19 which left him completely paralysed and unable to speak. Niall spent six months in a coma and against all the odds, and thanks to the incredible support of his loving family, he continues to rebuild his life after stroke. He has re-learnt how to walk, talk and now is a familiar face at the pool where he swims regularly as part of his recovery.

Niall says: “When I had my stroke people thought I wouldn’t walk again. I’d gone from being an active guy to feeling like my life had changed forever. Since then I’ve worked hard on my recovery by getting involved in lots of activities such as going to the gym and swimming. The team from the Stroke Association have helped me to focus on my goals and rebuilding my life after stroke.

“When I left hospital the most important thing to me was to get back on my feet and walking again. I remember back at the start wanting to drive so badly as I saw it as freedom and so I’m really proud that I passed my driving test seven years ago. It made a massive difference to my life. I’m now able to get out independently and for me, that’s a big deal”.

“I love exercising. I do it because it helps me and every day I exercise, makes me stronger and that little bit better. Swimming is very important to me now, not only because it helps me with my physical recovery from stroke but also, it’s a great way for me to unwind and clear my head when things get on top of me. I’m proud that I’m able to drive and swim and that I can walk again but to me, it isn’t good enough yet and there’s still work to be done.

I’m now volunteering once a week at the Stroke Association office in Belfast. It makes me feel normal again and I need to get my confidence back within a work-place. It feels like a job and it’s nice to get out of the house and meet new people and give something back.

“If you’ve had a stroke, it’s so important that you get up and do what you have to do and don’t make excuses. You have to do it for you. You can’t say you want to get better for other people. You have to want to do it for yourself or you’re beat”.

Juliet Bouverie, Chief Executive of the Stroke Association, said: “These stats are truly shocking. I am heart-broken to hear that stroke survivors felt they couldn’t speak to those closest to them about their biggest worries and fears. When you live in isolation, too afraid to leave the house and are unable to ask for help, your motivation can disappear, and can leave you in a very bad place emotionally – feeling like a prisoner in your own home.

“It takes a team to rebuild lives after stroke. When stroke strikes, part of your brain shuts down, and so does a part of you. Recovery is tough, but with the right specialist support, the brain can adapt after stroke. I’ve heard countless stories, and know countless people who, after many years continue to make remarkable recoveries. The first step to eliminating fear is to ask for help and support. If you are a stroke survivor, this could mean speaking to your doctor or social worker to get some answers. If you know a stroke survivor, reach out, ask them how they’re feeling. No one should have to live their life in constant fear.”

The Stroke Association’s research also found that:

• Only 18% of stroke survivors were confident that they would get enough support to make a good recovery
• 87% of stroke survivors said they feared losing their independence
• 81% of stroke survivors said they were afraid they wouldn’t be able to look after their children or parents.

Juliet continues: “I was horrified to find out that there are still many people who feel helpless. People are missing out on the life they could have – this must change. Don’t be afraid to ask questions about your health. We want everyone to know that you can rebuild your life after stroke. Every stroke is different and so is every recovery. It can take years to adjust to a new normal.

“The Stroke Association’s Helpline is for everyone affected by stroke. There are no stupid questions. If you are worried about anything, call 0303 3033 100 and get support from one of our trained helpline staff.”

For more information about Rebuilding Lives or about stroke, visit www.stroke.org.uk/rebuildinglives.

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For more information on the research, please contact Brenda Maguire by emailing Brenda.maguire@stroke.org.uk or call 02890508051 or 07947273640

Notes to Editors

About the research

• (i)1.2 million stroke survivors in the UK according to the Stroke Association’s State of the Nation report https://bit.ly/2ntPyX5
• (ii)Statistics based on a 4Media Relations survey of 1,001 stroke survivors conducted August 2019.

Rebuilding Lives

• The Stroke Association’s Rebuilding Lives campaign will change the way people think about stroke using stroke survivors’ real stories. Told in their own words. Unscripted. Unfiltered.
• These stories show that stroke can strike anyone at any time. Changing lives in an instant. They’ll help people understand that a stroke happens in the brain – the control centre for who you are and what you can do. And that the impact varies depending on which part of the brain is affected. It could be anything from wiping out your speech and physical abilities, to affecting your emotions and personality. Crucially, the stroke survivors in our campaign are living proof that life after stroke is possible. With the right specialist support and a ton of courage and determination, the brain can adapt. People can recover. Adjust to a new normal. There is hope.
• The Stroke Association is here to support people to rebuild their lives after stroke. Our campaign will inspire everyone to take action and join our growing community. Because everyone deserves to live the best life they can after stroke.