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Carers at breaking point: UK stroke carers go without vital support

Press release   •   Sep 23, 2019 11:04 BST

Stroke survivor Anne with carer husband John, Cardiff

One in five (19%) people caring for stroke survivors have not accessed any form of help after their lives were turned upside down overnight, according to new figures published today by the Stroke Association.

The charity has also found that 40% of stroke carers who had been caring for more than three years report feeling exhausted and around 1 in 3 stressed or anxious . Despite this, more than a third of people caring for stroke survivors (35%) receive no emotional support, with a devastating impact on their health and well-being.

There are currently over 1.2 million stroke survivors in the UK and this number is predicted to rise to 2.1 million in 2035. The charity is warning that stroke carers are coming under increasing pressure to manage their own daily needs while caring for their loved ones, and the situation is likely to get worse.

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 third chapter (of four), Caring for a stroke survivor: what carers need, reveals:

  • Stroke carers are struggling to cope: almost half (47%) of the carers who did not have any support said that they were not offered any help, or did not know where to start.
  • Stroke carers are feeling isolated: Over a quarter (27%) of carers said there were not enough support groups for them.

John Milnes, 72, from Cardiff, has been caring for his wife Anne since her stroke in 2015, despite being diagnosed with Parkinson’s himself.

He said: “Anne’s stroke left her unable to use her right side. She also has speech and language difficulties. Anne was an English teacher and her mind is as sharp as ever, but she can’t get her words out, which is so frustrating for both of us.

“Only a few months after Anne’s stroke, I was diagnosed with Parkinson’s, which affects the strength of my voice and energy levels. I attend voice training {LSVT}and exercise classes each week to help.

“My wife does have carers who come to the house for an hour or so each morning and evening, which is very helpful. But otherwise, I’m her carer, 24/7. I also need to make sure that any new care staff that come to the house understand what Anne needs, which can be very draining and means I have very little free time for myself.

“As soon as I tell people my wife is being supported, the doors which could offer me support seem to close and I never have the time to follow-up any opportunities.

“It’s never been clear at which point I could get any help for myself.

“One thing which has made life easier are the golfing sessions for carers, organised by the Stroke Association. It’s good to spend time with others who understand, while my wife enjoys some respite at the local stroke group.

“One benefit of golf is the chance to meet for a coffee and chat afterwards. So even if our golf pro isn’t available, we’re still going to organise some get togethers for the group of carers.”

Carol Bott, Director of the Stroke Association, said: “Lives change in an instant after a stroke. Overnight, a partner becomes an unpaid carer. We know that thousands of people all over the UK are dedicating their lives to caring for loved ones, whose speech, independence, emotional wellbeing or personality could be affected after a stroke. And as these new figures show, over time, taking on the role of carers often comes at the cost of their own health. Sadly, far too many people are facing this devastating situation alone and unsupported.

“The number of stroke survivors is set to rise by almost one million people by 2035. So this problem is only set to get worse.”

The Lived Experience of Stroke report exposes the realities of living with stroke. The Stroke Association wants everyone affected by stroke to have access to the support that they need, when they need it. There are currently over 1.2 million stroke survivors in the UK, and over half (62%) of those surveyed said they had relied on the help of an unpaid carer at some point since their stroke. The findings also reveal that:

  • Stroke carers are facing financial hardship: over a quarter (27%) of carers said they did not receive enough support on Carer’s Allowance/benefits.
  • Caring for stroke survivors is not shared equally between women and men, with more women (68%) taking on the role of carer.

Carol continues: “Carers need support, advice and information to help them balance caring while taking care of their own well-being. We need to make sure that every person who cares for a stroke survivor has the right emotional, financial and practical support in place. For example, every carer is entitled to a Carer’s Assessment(ii) from their local authority, to make sure they have the help and support they need.”

Emily Holzhausen OBE, Director of Policy and Public Affairs at Carers UK, said: “Suddenly taking on care for a family member who has experienced a stroke can be a whirlwind of change, with carers having to adapt quickly but often unaware of where to turn to for support.

“Enduring high levels of stress and exhaustion, many carers see their finances worsen and find it difficult to prioritise their own needs, continuing their caring role without support.

“Unpaid carers and the people they care for urgently need better quality support and access to services. The Government must deliver plans for social care reform that ensure carers get the practical and financial support they need to care without putting their lives on hold.”

The Stroke Association provides support and information for people who have been affected by stroke. We provide carers with information on how to request a carer’s assessment. We also offer Life After Stroke Grants for short breaks for carers and support through our Stroke Helpline (0303 3033 100), My Stroke Guide, Stroke Recovery Service and our education programme, Caring and You.

For more information visit: www.stroke.org.uk

For more information about the Lived Experience of Stroke report – Caring for a stroke survivor: what carers need - visit www.stroke.org.uk/livedexperience


-Ends-

For more information on the research, please contact: Katie Chappelle, Head of Influencing and Communications at Stroke Association Wales; Katie.chappelle@stroke.org.uk or 07703 318844, or ffion.miles@stroke.org.uk / 02920 524419

Notes to editors:

About the Stroke Association

  • Stroke strikes every five minutes in the UK and it changes lives in an instant.
  • Each year around 7,400 people will have a stroke in Wales and we estimate that there are almost 70,000 stroke survivors currently living in Wales.
  • 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 survey was carried out by 2CV (June-August 2018) 9,254 stroke survivors completed a postal survey, 1880 stroke affected people, of whom 681 were carers completed the survey online as part of a nationally representative sample of the stroke population in the UK.
  • (ii)In Scotland, this type of assessment is known as a Carer’s Support Plan.

About Carers UK

Carers UK is a charity led by carers, for carers – our mission is to make life better for carers.

  • We give expert advice, information and support
  • We connect carers so no-one has to care alone
  • We campaign together for lasting change
  • We innovate to find new ways to reach and support carers

For practical advice and information about caring, www.carersuk.org or email advice@carersuk.org.

The Carers UK Forum is our online community of carers and is available to Carers UK members 24 hours a day, 365 days a year: www.carersuk.org/forum.

Website (www.carersuk.org), Facebook: (www.facebook.com/carersuk);
Twitter: @CarersUK

Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097).

  • 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.