Juliet Bouverie, Chief Executive of the Stroke Association explores the challenges around recovery from stroke
When stroke strikes, part of your brain shuts down. The impact is devastating. It could be anything from wiping out speech and physical abilities to affecting a person’s emotions and personality. There’s no doubt that recovery from these effects takes time, a ton of courage, determination and support.
Doctors, physiotherapists and speech therapists are a vital step in helping stroke survivors rebuild their lives, but we need to know what struggles stroke survivors face that advances in medical knowledge cannot solve. This is why the Stroke Association commissioned our largest ever survey of UK stroke survivors to form our four-part Lived Experience of Stroke report.
Throughout 2018, over 11,000 stroke survivors and carers from across the UK told us about their experience of stroke. They shared their thoughts and feelings about the severity of their stroke, life after their stroke, the things they have found challenging to adapt to, the support they have received, and the areas in which they wish they had been better supported.
Every day, my colleagues and I at the Stroke Association hear upsetting stories which bring the research findings to life. We hear of marriages broken and suicide attempts, of jobs lost, houses sold and stroke survivors, their families and family carers becoming homeless. When I first joined the Stroke Association, I was told about one man who lamented that living with the effects of stroke wasn’t a life worth living for him and that he’d rather have died in hospital. On the most basic level, this is upsetting and speaks of the psychological trauma a stroke can cause. We now have robust data to show what we knew anecdotally, that the stroke population desperately needs emotional and psychological support.
For too long now, the social and psychological impacts of stroke have gone unnoticed and have been overshadowed by the importance of physical rehabilitation. There are currently 1.2 million stroke survivors in the UK. Alarmingly, we found that nearly a million stroke survivors have a mental health problem as a consequence of their stroke. Three-quarters of survivors face a battle with depression, anxiety, lack of confidence, mood swings and even suicidal thoughts. Devastatingly, a quarter of these people say they haven’t had the emotional support they should be getting, and so desperately need, to rebuild their lives.
Overall, nine out of ten survivors experience at least one cognitive effect including fatigue, problems with concentration, decision-making, reading, writing and poor memory. These challenges are compounded by the worry that another stroke may be on the way.
A stroke at any age can be devastating, but the condition is particularly cruel when it hits people of working-age. One in every four strokes happens to a person aged 18-65. We now know that nearly half (43%) of working-age stroke survivors are faced with financial hardship after their stroke and over half (51%) gave up work or reduced their working hours following their stroke. Nearly one in six (15%) working-age stroke survivors experienced discrimination, missed out on a promotion or said their employer was not supportive.
Of course, the psychological and physical effects of stroke can be heavily intertwined, as often the mental and therefore hidden impacts of a stroke affect a stroke survivor’s ability to work as much as the physical impacts. Employers often do not understand the breadth of consequences that a stroke can have on a person; this is symptomatic of the public’s overall lack of stroke knowledge. For example, 14 million people who know a stroke survivor don’t even realise that stroke happens in the brain.
Our stroke recovery teams provide stroke survivors and their families with information and advice on how to rebuild their lives after stroke, including signposting to other services and support with filling in disability benefit application forms. The Stroke Association’s service teams help stroke survivors get back to work and provide advice to reduce the financial burden that a stroke can have on a survivor. We have developed My Stroke Guide to help stroke survivors access vital information and offer peer support online and we also run the Stroke Helpline as further support for everyone affected by stroke.
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 social, emotional and psychological support. We have pushed for psychological support to become a higher priority and I’m pleased to see more holistic support included in the National Stroke Programme. The programme aims to deliver on stroke goals in the Long Term Plan and we are proud to be working closely with NHS England to develop and deliver it. Please do refer your clients who may be affected by stroke to the Stroke Association’s vital information and support services (see below for details). We’re here to help rebuild lives after stroke.
Stroke Helpline +44 (0)303 303 3100
Stroke and Work: