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.

Willie Mclean is 46 and lives in Portadown. Willie was a busy music teacher, performing musician and family man when stroke struck late one night in October 2017.

Willie’s speech returned after a few days but he was left with paralysis on the left side of his body and spent two months in hospital where he received physiotherapy and occupational therapy.

Willie says: “I remember the day the Consultant stood at the end of my bed to tell me ‘Willie you might never walk another step again’. I just remember saying, that’s nonsense and I did it. I walked out of the Lurgan Stroke Unit. After that, everyday I’d try and walk another 10 steps more or walk to the next house along the street and just kept extending my goal each day.

“In the beginning, right after I’d been discharged from hospital, being cooped up at home was tough. I remember being offered medication for my mental health but I always said I’m not depressed or sad, I’ve just had a stroke. I had to wait nearly five months for any kind of emotional support. It was great when I got it but the wait was too long.

“When I came out of the hospital in December, I’d been told that I would receive regular physiotherapy immediately to make the most of the progress I had already made. But in the first few weeks I only saw therapists three or four times. I remember those days of being sat at home, unable to get out of the house, it was so frustrating for me. I was house bound and days would pass when no one would turn up. I just kept thinking - maybe tomorrow. I’m grateful to everyone who has helped me recover along the way but you can’t choose when stroke strikes and at that time, here where I live, the rehabilitation support was lacking”.

“After four months, I was told to prepare for the possibility that the movement in my arm would not come back but I refused to give up and so I’ve been paying for neuro-physiotherapy and swimming sessions.

Willie continues: “I’m so lucky to have music in my life. I involved my friends from the local music scene in holding two fundraising music concerts and raised an amazing £8,000 to help me pay for private therapy which is really working. I can now weight-bear on my arm and my strength and movement is improving all the time.

“Since my stroke, I’ve been determined that I will get better. I just need time and the access to the experts who can work with me to make it happen. I’m very proud of the achievements I’ve made, I just know that by staying positive and taking encouragement from each small improvement I’m going to get better.

“I just wish all stroke survivors were able to get the appropriate physical and emotional support they need to rebuild their lives no matter where they live or what their circumstances are”.

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