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

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.

Ann Turner, 66, from Ampthill, understands the pressures and concerns family members face when caring for someone who has had a stroke. She has been a carer for husband Les, 68, since 2010 following two major strokes, which left him unable to speak and move his right side.

Following his strokes, Les had to have three months of rehabilitation while in hospital, with Ann at his side, followed by months of physiotherapy which is still ongoing.

Ann said, “Our lives were turned upside down after Les had his two strokes. As well as major problems with speaking, Les has had to learn to do everything with his left hand so straight away he became reliant on me for everything he needed on a daily basis.”

“My main motivation has always been to keep Les in his own home rather than residential care, which we’ve been able to do. We have been married for 45 years, so of course I do everything I can for him - it’s just what you do for the person you love”.

While Ann is always on hand for everything Les may need, she has also learnt the importance of caring for herself too.

Ann said: “What I’ve learnt from the experience is that as a carer, it’s so important to take care of yourself physically and mentally. I do exercise classes, walk to town and have coffee with a friend every other day and practice mindfulness. I’ve discovered that If you don’t look after yourself, how can you look after someone else?”

Juliet Bouverie, Chief Executive 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.

Juliet 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