Nearly half of working age stroke survivors face financial hardship

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.

Sean Barr lives in Ballymena and is 54. In May 2019, just eight months after being made redundant from a 40 year career as a security manager at Michelin, Sean had a stroke.

“The morning it happened, I remember falling out of bed and my wife being concerned but went on to work. She knew something was wrong though and kept calling my mobile but I just couldn’t work out how to answer it. Thankfully Sharon came back and found me unable to speak properly and rang for an ambulance.

“They took me to the Royal Victoria Hospital where I underwent surgery to remove a clot from my brain”.

Sean says: “I was looking forward to retirement and then all of a sudden the stroke happened. It’s been a big shock. I’ve worked all my life and after the redundancy I planned to get a part time job to tide me over until I could retire. My wife Sharon and I had always planned to retire together when we were 57 but the stroke has changed all that. She’s still out at work but I’m at home. My wife had to take a month off work after my stroke to help me recover. She worries about me doing too much and the kids are always calling to check I’m not doing things I shouldn’t be. They’re very protective and they won’t even let me cut the grass”.

“I worked for 40 years and it was a demanding job but I always coped fine. But since the stroke, I’ve struggled with anxiety and I’m just so tired all the time. I live with fatigue following the stroke, I couldn’t cope with work now so we have to tighten our belts financially. It’s not how I planned our retirement and the fear and worry of me having another stroke affects all the family. But I’m grateful that my recovery is going well. The doctors told my wife that I had a 50-50 chance when I got to hospital so it’s a miracle I’m here. Your health is your wealth but stroke definitely has an impact on your life, career and finances. I was looking forward to my retirement but having a stroke was a big shock”.

Barry Macaulay, Director of the Stroke Association in Northern Ireland, 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.

Barry 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 like Sean, 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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