Thousands of stroke survivors in Northern Ireland deserted after leaving hospital

This World Stroke Day, the Stroke Association published new findings⁽ⁱ⁾ that show thousands of stroke survivors in Northern Ireland said they struggle to access the support they need to rebuild their lives after stroke.

There are currently more than 38,000 stroke survivors in Northern Ireland, and these latest findings show that many people feel let down by the health and social care system. The charity’s Lived Experience report is compiled from a large survey of people affected by stroke to find out more about their experiences.

This final chapter, Rebuilding Lives after Stroke, reveals that in Northern Ireland:

• One in five (20%) of stroke survivors said they did not have the information they needed when they left hospital
• Although more than four out of five (86%) survivors were left with mobility problems, almost half (48%) said they needed longer or more frequent support from physiotherapy services than was provided.

• One in four (28%) of stroke survivors report not receiving enough emotional support leaving them struggling to cope.

Laura Harper, 26, from Bushmills in Northern Ireland, had a stroke in 2016 when her baby daughter Evie was just 10 weeks old.

She said: “I’m very grateful to the NHS for saving my life but I feel I was let down when it comes to rehabilitation. I didn’t get any physiotherapy in hospital and was sent home to stay with my parents in a two storey house. I couldn’t walk or climb stairs and had two young children. It was scary.

“I wanted to be able to walk again, talk again, get back to work and be as independent as I could, for me and my kids, but the rehabilitation service just wasn’t tailored for younger survivors like me.

“I had some occupational therapy, speech therapy and physiotherapy but after 12 weeks I was left to cope on my own. I had to pay for some more OT and equipment to help my recovery but it was a big burden on me and my family. Physically and emotionally my stroke has had a huge impact on everyone and I felt guilty that my kids, family and friends have to help me. I’ve got problems with my balance and weakness in my right side. My memory is bad and I struggle with every day things like feeling the temperature of my children’s bath. There are new challenges every day. Emotionally it is tough.

“Younger stroke survivors like me have a long road ahead of them and it takes time to adapt to a new life with physical disabilities so people shouldn’t be cut off from rehabilitation before they ready. Rehabilitation should be tailored to the individual and their ambitions to help them make the best recovery possible”.

Barry Macaulay, Director of the Stroke Association Northern Ireland said: “Stroke turns lives upside down, robbing you of your mobility, your speech and often your independence. We know there are hospitals, stroke units and dedicated stroke professionals throughout Northern Ireland providing excellent stroke rehabilitation.

“But there are still thousands of stroke survivors across Northern Ireland being let down by the health and social care system when they leave hospital. This is putting people’s recoveries at risk. Surviving a stroke is the first challenge; recovery is tough, but it’s only possible when stroke survivors can access the range of support services that they need, and deserve, to rebuild their lives.”

The Lived Experience of Stroke report also exposes the realities of living with stroke in Northern Ireland:

• Around a third (36%) of stroke survivors feel their support focused on their medical condition and not them as a person.
• Half (50%) of stroke survivors who also had other health conditions, felt the support was more focused on their other conditions rather than the impact of their stroke.
• Around a quarter (23%) said they didn’t receive enough practical support for things like driving after stroke.

Barry continued: “It takes a lot of effort and determination to keep going with rehabilitation after stroke but with the right specialist support, the brain can adapt. Even months and years after stroke, it’s possible to make a recovery.

“It’s important that everyone affected by stroke in Northern Ireland can access the support they so desperately need. Over the last decade there have been significant advances in hospital based stroke treatment in Northern Ireland. While acute stroke services are developed and improved further, it is vital that rehabilitation and long term support for stroke survivors is given the same priority. We’re pleased that the Department of Health has committed to improving rehabilitation and long term support in their proposals to reshape stroke services and we urge them to implement the necessary changes as soon as possible. No stroke survivor should be denied the chance to rebuild their life.

“We’re here for everyone affected by stroke. We offer vital support and information through our Stroke Helpline. We also have a number of stroke clubs and groups that you can join to meet other stroke survivors, so you don’t feel alone in your recovery. I’d also encourage all stroke survivors to refer to the national guidelines that we developed with the Royal College of Physicians (www.stroke.org.uk/stroke-care) so that they know their rights to rehab. My Stroke Guide is our online community of over 11,000 people affected by stroke, which many people said helps with their recovery.”

The Stroke Helpline (0303 3033 100) offers information and support to people who have been affected by stroke. For more information about the Lived Experience of Stroke report – Rebuilding lives after stroke - visit www.stroke.org.uk/livedexperience