The NEN – North Edinburgh News

• Over a quarter (27%) of the population don’t know that a stroke occurs in the brain – highlighting a lack of knowledge around the UK’s leading cause of disability.

• Nearly half of UK adults know someone who has had a stroke (20 million people), but most admit to a lack of awareness and understanding needed to support stroke survivors in their recovery.

• In a separate survey of stroke survivors, more than four out of five (85%) people said the people they had daily contact with did not understand the impact of the stroke.

Startling research unveiled today shows nearly half (45%) of people who know a survivor of stroke personally admitting that they are struggling to support them to make their best possible recovery, according to new findings published today by the Stroke Association.

The research reveals that one important reason for the lack of stroke support for survivors stems from a lack of awareness of what stroke is and how it affects people. Shockingly, more than a quarter (27%) of the public(ii) don’t know where in the body a stroke occurs: the brain. For those that know a stroke survivor, a huge 82%(i) feel that a greater understanding of stroke would help them support the survivor better.  All this, despite stroke being the country’s leading cause of disability.

The research(i) also found that of those who know someone personally who has had a stroke:

• Nine in 10 (95%) agreed that family and friends play an essential role in the recovery process.
• Nearly half (46%) admitted wanting to do more to help the stroke survivor that they knew but lacked the knowledge to do so.
• Nearly a fifth (18%) say they do not properly understand the overall impact of the condition.

In a separate survey (iii) of stroke survivors, more than four out of five (85%) of stroke survivors said the people they had daily contact with did not understand the impact of the stroke. This ‘knowledge gap’ is preventing survivors getting the support they need from those closest to them, and stopping survivors from making the best possible recovery to rebuild their lives after stroke.

Tom Middlemass from Edinburgh had a stroke at the age of 52.  He was at work at the time when it happened. All he remembers is not being able to talk or get up.  He had lost the ability to communicate and wasn’t able to walk.

When the emergency services arrived, he was taken straight to the Edinburgh Royal Infirmary where he remained in hospital for several days.  Tom couldn’t talk for three days and he had to learn to walk again.

Tom and his wife Joanne didn’t know anything about stroke including the fact it can affect your ability to communicate.  So Joanne had to find ways to help him whilst struggling to grasp the enormity of it all herself. She wrote things down, she tried to encourage Tom to talk, but it was hard to stop herself from finishing sentences for him.

Tom said: “Coming home made me realise just how much my life had completely changed. Everything changed for me: physically, emotionally and financially. I found myself going into deep depression.  I called it my ‘black, evil dog’.

“I couldn’t get out of bed in the morning. My life felt like a tunnel that I couldn’t escape from. There was no light at the other end.  The whole family were aware of it, but didn’t really know what to do and how to help me.”

Joanne, Tom’s wife said: “There’s nothing more distressing than knowing you have to help the person you love get better, but not knowing how to do it. And it wasn’t until Tom starting talking about his depression, that he started to turn the corner.  

“He’s never been one to talk easily about his feelings, but something had to change. Since then, Tom has gained confidence from volunteering with the Stroke Association in Scotland. He still has good days and bad days, but things are definitely better than they were.”

The charity published these findings to mark the launch of its newest campaign, Rebuilding Lives, which aims to showcase the challenges faced by stroke survivors and those who support them with their recoveries.

Other findings reveal the damaging effects that stroke can have on social networks and relationships:

• More than one in 10 respondents admitted to seeing the survivor less after the latter had a stroke.
• More than one in six of those who know a stroke survivor, admitted spending less time with them because the latter was perceived as not being the same person following the stroke.
• A quarter (25%) said there had been a drop in social activity on the part of the stroke survivor.

Juliet Bouverie, Chief Executive of Stroke Association, comments: “A stroke happens in the brain, the control centre for who we are and what we can do. 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. So, it’s a real challenge for everyone as they come to grips with this sudden and life changing event. These findings highlight the complexity of stroke and raises the desperate need amongst people to understand the impact of stroke in order to better support their loved ones.

“There are over 1.2 million stroke survivors living in the UK of which 124,000 are from Scotland.  Many of those are reliant on their friends and family, from help with daily living to understanding their emotional and mental health needs.  

“It doesn’t have to be this way. We’re urging those people who know someone who has had a stroke, to help turn this around and fill this knowledge gap. Reach out to the Stroke Association for help, so that together we can support stroke survivors to rebuild their lives.”

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

For more information about what you can expect after a stroke, the Stroke Association has partnered with the Royal College of Physicians to produce an easy to read booklet accessible here: https://tinyurl.com/yyqj638z