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.”
Debbie Pritchard, 39 from Liverpool, was building her high flying management career when she had a devastating stroke aged just 30, caused by a car accident.
Debbie’s stroke affected the vision in both her eyes, and also left her with a loss of sensation of heat and pain in both sides of her body. However, it was the hidden effects of Debbie’s stroke which affected her the most.
Debbie said: “I used to cry a lot, constantly. I mean for days, months at a time. I think I cried for about four years. It was so hard to control my emotions. The biggest thing was working out why it had happened to me. I felt like I had no purpose at all. One day I’m living for my career, the next I’m not even wanting to go out my front door. I was always living in fear of it happening again.
“I got into a deep depression. At times I did feel suicidal. In fact, I planned three attempts to kill myself, but I was scared I’d survive it. I was never like that before my stroke. I always saw suicide as the coward’s way out but after my stroke it seemed like the easiest way out. It was no reflection on anyone else. It was just about me. I always wanted to make a difference, but my stroke took that away.”
Debbie’s brother let her look after his pug for a couple of months, and she realised she wanted a dog of her own. She added: “Everyone was against it because they didn’t think I could look after myself, but I got my own dog, Duchess. She is my heartbeat. She’s the reason I got up and went to the park in the evening. She gave me a purpose. Duchess was my life changer.”
As well as focusing on Duchess, Debbie also went to the Stroke Association’s Merseyside Life After Stroke group, five years into her recovery. Debbie added: “I didn’t want to go but I’d tried everything and knew I was going down a deeper spiral. Once I walked into that group I never looked back. I was able to talk about my stroke. We were like a big family.”
Debbie has now returned to work, nine years after her stroke, as a clerical assistant for the Stroke Association. She said: “The emotional effects of stroke may be hidden to others, but they’re not hidden to the person who is walking with them 24/7. It’s been a mission to get to where I am now. Getting back to work was something I never thought I’d do. Over this last year I’ve also had emotional support. I opened up as much as I could and conquered some demons. Nothing can prepare anyone for what goes on in your mind after a stroke. But emotionally today I’m stronger than I ever was.”
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 email@example.com or visit www.samaritans.org to find details of your nearest branch, where you can talk to a trained volunteer face to face.