Nearly half of working age stroke survivors face financial hardship

New figures published today by the Stroke Association reveal that almost half (43%) of stroke survivors across the UK, aged under 65, are faced with financial hardship after their stroke. The charity’s findings reveal that more than 125,000 stroke survivors have experienced a loss of income, faced discrimination at work, and in some cases, have been forced to sell their home to pay for medical expenses.

The Stroke Association’s Lived Experience report is the UK’s largest ever survey of people affected by stroke⁽ⁱ⁾ with over 11,000 responses. The second chapter (of four), The wider impact of stroke, shows how the impact of the condition affects people’s working life, relationships and finances.

There are currently over 1.2 million stroke survivors in the UK, with a quarter of strokes happening to people of working age. The findings show the price tag that can come with a stroke, revealing that across the UK;

• Over half (51%) of stroke survivors aged under 65 gave up work or reduced their working hours following their stroke.
• Close to one in six (15%) of stroke survivors aged under 65 experienced discrimination, or missed out on a promotion, or said their employer was not supportive.

Sam Hodson from Newark, who had her stroke in 2018 when she was just 41, has faced serious financial hardship ever since.

Last November, while getting ready in her bedroom, Sam began noticing a tingling sensation in her face and a terrible feeling of spreading numbness down her body. After sitting down, Sam began to lose the use of her arms and could no longer stand or even speak properly.

After managing to alert her son and daughter, who were luckily in the house, Sam was rushed to A&E where doctors began Thrombolysis treatment to try and break down the clot that had led to her stroke. Sam’s stroke was caused by a hole in her heart and she is still on a waiting list for a procedure to close this. She has been left with aphasia, whole left side weakness and major fatigue among other symptoms.

Sam said: “At the time of my stroke I remember thinking, ‘I’m going to die’ it was the most terrifying moment of my life. While my recovery has been good physically, I suffer from extreme anxiety and depression and I always have the fear of having another stroke”.

As if the physical and mental challenges of her stroke weren’t enough, Sam, who worked with adults who have learning difficulties, has also struggled financially and feels the support just isn’t there when she isn’t able to work.

Sam said: “Financial struggles have definitely hindered my recovery, especially with having a family and a mortgage. Things are so much worse after my sick pay period ended, more needs to be done to help families in this situation”.

“The waiting time for any help is ridiculous. I seriously think the government and Department of Work and Pensions need to look into help for people after sudden illnesses like stroke. They are forcing families into spiralling debt and the risk of losing their homes – it’s absurd”

Juliet Bouverie, Chief Executive of the Stroke Association, said: “Life changes instantly after a stroke, and the condition can have a huge cost, not only to people’s finances, but also to their health, independence and relationships. But not enough people realise the wider impacts that stroke can bring. Overnight, a partner becomes a carer. A breadwinner becomes jobless.

“These latest figures show that many stroke survivors are facing a life on the edge of poverty; many have had to give up work, and in some cases, face discrimination from their employers. This comes at a time when financial worries should be the last thing on their minds.”

The Lived Experience of Stroke report seeks to expose the realities of living with stroke. The charity wants everyone affected by stroke to have access to the support that they need, when they need it. The latest findings also show that:

• Nearly one in five (15%) of stroke survivors faced increased costs as a result of their stroke, which could include medication, aids and higher household bills due to being at home
• Sometimes stroke survivors even have to sell their homes to pay for medical expenses; across the whole UK stroke population this could be as many as 12,000⁽ⁱⁱ⁾ people.
• Only one in 10 (10%) of stroke survivors had used a benefits or financial advice service.

Juliet continues: “Recovery is tough, but with the right support and plenty of courage and determination, the brain can adapt. Time and again we’ve seen thousands of people adapt to a new life after stroke; and we’ve helped them to adjust to a new normal. However, it is extremely worrying that not enough stroke survivors are receiving the support they need to either remain in work or access vital benefits. I’d like to see more people contacting our Helpline to help them through this difficult process.”

The Stroke Association spoke to stroke survivors, who offered advice for anyone who has found their work or finances impacted by their stroke. They advised:

Before stroke happens, consider income protection insurance and critical illness cover. For those who have dependents, such as a partner or children, you might also consider life insurance.

• When returning to work, talk to your employer and agree reasonable adjustments to help you in the work place. This could be a phased return, part-time or adjusted hours, or a move to lighter duties.
• If you are an employer and an employee has had a stroke, learn about the condition to help you understand how it affects an individual. Ask your employee what they need as this will enable you to support them in the best way.
• A stroke can have a huge financial impact, stroke survivors need signposting to services or charities that offer financial support.

Don’t be afraid to seek help – whether you are a stroke survivor or you know someone who has had a stroke.

Angela Matthews, Head of Policy & Advice at the Business Disability Forum, said: “Soon after a stroke, a survivor has to navigate how different their body feels, the changed pace at which their body needs to work, and learn to adjust to doing things in new ways. All of this often happens in the background while needing to return to work so that personal finances are affected as little as possible. Stroke survivors might not be able to return to the same job they did before, but they can sometimes return to some type of work, albeit different to what they used to do.

“The worrying 51 per cent who have given up work following a stroke means employers are losing valuable, experienced talent. There is also the wider policy concern that the disability employment gap is being increased, when stroke survivors are not being supported back to work by both the healthcare and workplace settings working together.”

The Wider Impact of Stroke report is part two of a four part series focusing on the Lived Experience of Stroke. For more information about the Lived Experience of Stroke – Wider Impact report, visit www.stroke.org.uk/livedexperience.

The Stroke Helpline (0303 3033 100) offers information and support to people who have been affected by stroke.

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

Notes to editors:

About the Stroke Association

• Stroke strikes every five minutes in the UK and it changes lives in an instant.
• The Stroke Association is a charity working across the UK to support people to rebuild their lives after stroke. We believe that everyone deserves to live the best life they can after stroke. From local support services and groups, to online information and support, anyone affected by stroke can visit stroke.org.uk or call our dedicated Stroke Helpline on 0303 3033 100 to find out about support available locally.
• Our specialist support, research and campaigning are only possible with the courage and determination of the stroke community and the generosity of our supporters. With more donations and support, we can help rebuild even more lives.
• You can follow us on Twitter, Facebook and Instagram.
• (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)Extrapolation based on 1% of the people who answered our survey said they had to sell their home to pay for medical expenses.

About Business Disability Forum

Business Disability Forum is a leading non-profit membership organisation which exists to transform the life chances of disabled people. With over 25 years’ experience, it brings together business leaders, disabled people, and Government to understand what needs to change to improve the life opportunities and experiences of disabled people in employment, economic growth, and society more widely. Business Disability Forum provides practical, evidence-based, strategic solutions for businesses to recruit, retain, and provide inclusive products and services to disabled people.

For more information, please visit http://businessdisabilityforum.org.uk/about-us/