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.

Helen Graham, 49, from Richhill in County Armagh had a stroke in November 2015. Before her stroke, the mum of four, was a teacher at a local primary school and led a busy and active life. She spent weeks recovering in hospital and was forced to retire from the job she loved due to the devastating impact of her stroke.

“It’s almost 4 years on since my stroke but I’m still struggling with the impact on my life. It’s not just physical, but mental and emotional too. I knew practically nothing about stroke believing that it only happened to older people. I did not know that stroke is a brain injury. When I first got home from hospital I found that I was able to do so little and I really struggled with that.

“The community stroke team visited me for a few weeks but when that stopped I felt very much on my own. Thankfully, I have a very supportive husband and family and that helped a lot. I’m not surprised that so many stroke survivors in Northern Ireland feel they haven’t received enough support to recover as I’ve met many people since my stroke who have struggled to access things like physiotherapy, speech and language therapy and counselling. Having a stroke is hard enough; we shouldn’t have to fight for the rehabilitation and support we desperately need to recover”.

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