Life after stroke support is a vital part of recovery. These services enable people to thrive, not just survive, after their stroke by providing information and help with regaining their independence, reducing their risk of a further stroke, and improving their confidence and physical and mental wellbeing.

However, too often, support suddenly ends when a stroke survivor leaves hospital, leaving them feeling abandoned.

Julie, 55, from Bury, was discharged from hospital without support when she had a stroke on 1 June 2023.

Stroke Association Support Coordinator, Jo, reads through a stroke information booklet with stroke survivor, Julie.
Stroke Association Support Coordinator, Jo, with Julie

“I was given my medication but then simply told to go home,” says Julie. “It was very odd getting home without any knowledge of what happens next. I felt left upstream without a paddle.

“A couple of weeks later, I still hadn’t heard anything from the stroke nurses or community stroke team. I thought, ‘Is that it? Have they just dropped me off home and left me?’ It was very lonely and quite scary.”

Julie is a full-time carer for her daughter, who has complex needs and is in her 20s. They were at home together one morning when Julie realised something was wrong.

“A few days before, I’d felt pins and needles in my left cheek. Later that week, I got up and found I couldn’t tie my dressing gown. I went to put my earrings in and really struggled. My left hand wasn’t doing what it was meant to be doing.”

Concerned, Julie called her doctor who told her to ring an ambulance. She was taken to Fairfield Hospital where she was diagnosed as having had a stroke. She then had surgery at Oldham Hospital and was discharged the next day.

When Julie got home, she received a letter about our support service in Bury. Worried about her next steps, she decided to get in touch with us. From that point, everything changed.

“I made contact with the Stroke Association and I received a lovely email back from Jo – one of the Stroke Association Support Coordinators, who has supported me since then.”

“Jo reached out to the district stroke nurses and connected me with the community stroke team. It turned out that I’d been missed off the system.

“Suddenly, I had a physiotherapist, stroke nurses and an occupational therapist all come out to see me. I couldn’t have been more looked after by them.”

Jo also put Julie in contact with services to help her get adapted cutlery so she can eat with her hand weakness and aids for her bathroom to support her mobility.

“Emotionally, it’s been really good to have the Stroke Association’s support. I’ve had lots of calls and emails from Jo. She visits me at home too, to see how I am and talk through my questions. She’s been my safety net.

“Jo also speaks with my daughter to see how she’s feeling. Though I’m a carer for my daughter, she is able to use the telephone and I know she would be comfortable to call Jo on my behalf if she needed to because she has met her and knows that Jo’s support benefits me.

“Jo is able to be there to support me for as long as I need, which is great just now because I don’t think I’m ready to be without her yet. The journey hasn’t ended and I know the Stroke Association will be there for my future steps.”

Join our campaign

Sadly, too many people don’t have access to ongoing life after stroke support services like ours, after their stroke.

We are calling on all UK health providers and decision-makers to recognise the value of life after stroke support, and ensure support meets the national guidelines so everyone who has a stroke can benefit.

Your voice matters, so please get involved. Read our report or join our Campaigns Network to learn more how about how you can campaign for life after stroke services in your area.

Stroke News magazine

This article is featured in the winter 2023 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.