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A million stroke survivors battling mental health problems

Press release -

A million stroke survivors battling mental health problems

EMBARGOED UNTIL 00:01 Tuesday 18 June 2019

A million stroke survivors battling mental health problems

Almost a million people who have survived a stroke have developed at least one mental health problem, according to new findings(i) published today by the Stroke Association.

There are currently over 1.2 million stroke survivors in the UK, and more than three quarters (78%) face a battle with depression, anxiety, a lack of confidence, mood swings or even suicidal thoughts. Yet worryingly, over a quarter (27%) of people say they have not received enough emotional support to help rebuild their lives.

The Lived Experience of Stroke report is the Stroke Association’s largest ever survey of people affected by stroke, with over 11,000 people responding(i). The first chapter demonstrates how the hidden effects of stroke affect almost everyone, yet can often go unnoticed by people in a stroke survivor’s life.

The findings reveal the real impact that stroke has on survivors’ mental health, with many people having to adapt to a ‘new normal’ while still living with the fear of having another stroke.

While anxiety and fear(ii) top the list of emotions that have the highest impact within the first six months of a stroke, most respondents said these effects can improve over time. In fact, more than half (56%) of these stroke survivors report now ‘feeling positive emotions’.

However, one in six (16%)(iii) people who have survived a stroke reported having suicidal thoughts, and a quarter (25%) of those were parents with children in their households. The findings reveal that among those survivors who felt this way, nine out of ten (89%) people also reported that their personal relationships had been negatively impacted since their stroke.

The charity’s latest findings demonstrate how stroke changes lives in an instant. As a result, roles within relationships are turned upside down. Overnight, a partner becomes a carer. A breadwinner becomes jobless.

Juliet Bouverie, Chief Executive of the Stroke Association, comments: “This report exposes the true devastation stroke can bring. These figures are extremely concerning, and show a desperate need for support to cope with the hidden, and often overlooked, effects of stroke. Far too many lives have been destroyed by stroke, and no-one should be left feeling suicidal. The evidence highlights how important it is that families, friends and health professionals who support stroke survivors understand what it means to live with these ‘hidden effects’, ask how people are feeling, and provide appropriate emotional and psychological support.”

Vicki Hewlett, 24, from Essex, had her stroke in July 2015 when she was just 20 years old and working as a horse riding instructor. For Vicki, it was the hidden effects that had such a big impact on her life.

After coming home from work, Vicki found that she couldn’t raise her left arm, which she initially dismissed. However, after shouting her partner Chris, they suddenly discovered Vicki was unable to stand, smile or even speak.

MRI and CT scans at the hospital soon revealed Vicki had had a stroke but it would be six months before they discovered that the stroke had been caused by a hole in her heart.

Vicki said: “After my stroke I felt like I had been hit by a bus. I have never felt so weak and delicate. I was left with a lot of fatigue and my speech was slurred when I felt tired - I became exhausted just walking from my bed to the toilet.”

While Vicki worked tirelessly to get back to physical fitness, it was losing a job she loved that had a huge effect on her mental wellbeing.

Vicki said: “When I came back to work I never really felt like they understood the severity of my situation. I couldn’t do certain tasks anymore and in the end I lost my job. I was distraught for so long and I just cried for days as I could no longer do something I loved”

“It was the lowest I’ve ever felt. I’m in my twenties, so people just assume that I’ve had a stroke and now I’m fine because my physical symptoms aren’t as obvious but things are still really hard.”

“Luckily, my family and partner have been amazing. I’ve made a conscious effort to eliminate any negativity in my life, I think of myself as a positive person and I want to remain that way, despite the ups and downs.”

Worryingly, the research also revealed that an overwhelming nine out of 10 (92%) stroke survivors experience at least one cognitive effect, such as fatigue(vi), problems with concentration, decision-making, reading, writing and poorer memory. Of those respondents:

  • Almost nine in 10 (86%) of people surveyed experienced fatigue(iv), which can be debilitating and doesn’t get better with rest
  • More than eight in 10 (83%) stroke survivors said they have problems with their short or long term memory
  • Eight in 10 (80%) stroke survivors reported issues with concentration, which can affect their ability to do more than one thing at a time.

The Stroke Association has published the Lived Experience of Stroke report to expose the realities of living with stroke, and highlight the many gaps in support that still exist. The charity wants everyone affected by stroke to have access to the support that they need, when they need it.

Juliet continues: “There is hope. We know from these findings that things can, and do, improve over time for many stroke survivors. Evidence shows that many are still recovering years after their stroke. That’s why we’re now working across the UK nations to support and drive changes which will improve the lives of people affected by stroke.

“In England, for example, we’re working closely with NHS England to deliver the Long Term Plan for the NHS which includes the National Stroke Programme. This Programme supports health and care services to make improvements from prevention and treatment right through to rehabilitation and long-term support after leaving hospital, including psychological support for stroke survivors.”

Dr Eirini Kontou, Clinical Psychologist and Senior Research Fellow at the University of Nottingham, said: “Many stroke survivors experience a wide range of overwhelming emotions, such as depression or anxiety, which can have an impact on their recovery and quality of life. There are effects of stroke that cannot be seen, so it is important that people can talk about how they feel and access the support required to rebuild their lives. This report highlights that we need to make sure that all stroke survivors and their families can get emotional support when they need it most.”

The Hidden Effects of Stroke report is part one of a four part series focusing on the Lived Experience of Stroke. For more information about the Lived Experience of Stroke – Hidden Effects report, visit www.stroke.org.uk/lived-experience-of-stroke-report.

For more details of support available in your area, please contact the Stroke Association helpline on 0303 303 3100. If you’re struggling to cope, you can contact the Samaritans free any time from any phone on 116 123, even a mobile without credit. This number won’t show up on your phone bill. Or you can email jo@samaritans.org or visit www.samaritans.org to find details of your nearest branch, where you can talk to a trained volunteer face to face.

-Ends-

For more information on the research, please contact: Ken Scott PR Officer at the Stroke Association at ken.scott@stroke.org.uk or 0115 7788429.

Notes to editors:

  • (i)The Lived Experience of Stroke – Hidden Effects, Stroke Association report surveyed 11,134 people affected by stroke; 1,880 people by online survey, and 9,254 by postal survey, conducted by 2CV (June – August 2018)
  • (ii)Around the time of their stroke, people report feeling anxious (46%), frightened (54%), shocked (39%) and confused (43%). Stroke survivors continue to feel these emotions during the six months following their stroke. Over time these negative feelings diminish, with 56% of stroke survivors saying they now feel positive emotions. (1,880 respondents responded to these questions in the Lived Experience of Stroke – Hidden Effects, Stroke Association, June 2019)
  • (iii)1,880 respondents (stroke survivors and carers) responded to these questions
  • (iv)Fatigue, or extreme tiredness, is the most common effect of a stroke. 86% of survey respondents experienced fatigue. Fatigue affects almost all stroke survivors and can be far more debilitating than people imagine. It is different from normal tiredness as it doesn’t get better with rest. Fatigue affects people both physically and cognitively.

About the Samaritans:

  • Samaritans is a charity working in the UK and Ireland to reduce the number of people who die by suicide and help those struggling to cope.
  • Anyone can contact Samaritans FREE any time from any phone on 116 123, even a mobile without credit. This number won’t show up on your phone bill. Or you can email jo@samaritans.org or visit www.samaritans.org to find details of your nearest branch, where you can talk to one of our trained volunteers face to face.
  • Every six seconds, Samaritans responds to a call for help.
  • Samaritans is a charity and it’s the public’s kind donations and more than 20,000 volunteers that mean we are always there for anyone struggling to cope. Find out how you can support us or volunteer with us.
  • You can follow Samaritans on social media on Twitter, Facebook and Instagram.

Topics


  • When stroke strikes, part of your brain shuts down. And so does a part of you. That’s because a stroke happens in the brain, the control centre for who we are and what we can do. It happens every five minutes in the UK and changes lives instantly. Recovery is tough, but with the right specialist support and a ton of courage and determination, the brain can adapt. Our specialist support, research and campaigning are only possible with the courage and determination of the stroke community and the generosity of our amazing supporters. We’re rebuilding lives after stroke. 
  • We’re here to support you to rebuild your life after stroke. If you need information or just want someone to talk to, call us on 0303 3033 100 or visit stroke.org.uk
  • Contacts

    Angela Macleod

    Angela Macleod

    Press contact Communications Officer Scotland press and Stroke Association research communications 0131 555 7244
    Laura Thomas

    Laura Thomas

    Press contact Communications Officer Wales 07776508594
    Ken Scott

    Ken Scott

    Press contact Press Officer North of England and Midlands 0115 778 8429
    Daisy Dighton

    Daisy Dighton

    Press contact Press Officer London and East of England 02079401358
    Martin Oxley

    Martin Oxley

    Press contact Press Officer South of England 07776 508 646
    Vicki Hall

    Vicki Hall

    Press contact PR Manager Fundraising and local services 0161 742 7478
    Scott Weddell

    Scott Weddell

    Press contact PR Manager Stroke policy, research and Northern Ireland 02075661528
    Katie Padfield

    Katie Padfield

    Press contact Head of PR & Media This team is not responsible for booking marketing materials or advertising
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    Kate Asselman

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