The making of Selfhelp4stroke

Selfhelp4stroke is a free self management website for anyone who has had a stroke.

It was developed by Chest Heart & Stroke Scotland in partnership with NHS Scotland, The University of Edinburgh, and people who have had a stroke living in Scotland.

It was funded by the National Advisory Committee on Stroke.

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John and Bill’s Story

Hello there, my name is John Fogarty and I’ve had a stroke. I had my stroke four years ago and I’m involved in the development of Selfhelp4stroke.

Hello, I’m Bill Rodman. I had a stroke almost five years ago and I’m involved in the development of Selfhelp4stroke.

What was life like before self management?

John: Well, before the lifestyle management course was even suggested to me, it was a big void I think. A lot of people didn’t know what to recommend me for where I kind of fitted. My stroke was predominantly down my left side, so I couldn’t move my left hand side. That included my arm, my face had dropped down on my left hand side, my speech was affected. So it was kind of a difficult time emotionally as well with my wife and four children. For them to see the dad that was and what daddy has now become. I felt a bit lost, that’s really the biggest emotion that I think I came across. I didn’t know where I belonged any more. And yet I could see my family and see them crying for me and I was you know in bits. It was only when the stroke nurse came to see us one day and suggested that lifestyle management maybe something I would consider. Thank goodness I did consider it cause it made a whole difference and it taught me about the self management side of things, taking ownership ourselves. And it’s not about doing things differently, it’s about doing things to achieve the same result as you used to before prior to you having the stroke.

Has self management helped you?

Bill: My emotions were all over the place. I was really, even when you laughed it turned to hysteria and the tears would start. It was really, really terrible. In fact in the class one day, there was four of us, one of them cracked a joke and the four of us all started laughing and it turned to hysteria, the four of us we were all just crying and the stroke nurse wasn’t too happy with us at the time. We couldn’t help it, it was just one of these things that happens to you. We’ve come a long way since that.

So they really helped you, support you in dealing with your emotions?

Bill: Oh without a doubt, I still have a wee bubble at that ‘Surprise Surprise’ comes on right enough, but doesn’t everybody? And most of them have problems sleeping, I have problems staying awake. I’m just someone that’s different from everybody else, I don’t know how. But yeah, I have no bother sleeping.

John: But what lifestyle did for me, it opened up a whole new realm of possibilities, you know plus doing physio and trying to strive myself to walk you know again. Cause when I left hospital I was in a wheelchair and thats devastating enough as it is you know I didn’t want to stay in a wheelchair all my life. So my first port of call was to actually say to myself right you got to get on your two pins and be able to stand up for yourself, so that’s what I did. And then when I went to the course it also taught me various different ways of achieving things. One of the stresses, they do stress on the course is really one of, you’ve had the institution of the hospitalisation and now you’re out in the real world that there’s not a bottomless pit of funding that can go to an individual. You know sooner or later that money is curtailed, or they are going to run out of funding. The emphasis has to be on you getting on and doing more things for yourself. And that’s kind of the essence of lifestyle is all about teaching you the self management road and how to actually achieve, I’ll stress again, achieve the same things that you used to before, but by doing it in a different way.

Describe your involvement with Self Management

Bill: My stroke nurse put me on to the Lifestyle Management and thoroughly enjoyed it, I really did. In fact, I just looked around about the class one day and I seen these young mothers, young people just starting their careers and I thought to myself maybe I could do something to help these people cause I just thought it was old guys like me that had strokes. I never in a million years thought that young people took strokes. So I asked the stroke nurse if I could come back to future classes to see if I could do anything to help. She agreed with that and I went to the other classes and I got so much satisfaction out of it. One guy he was sitting himself one day and I went over and spoke to him, just blethered away and the following week he came in and said he was on a downer, but he went out on a high after talking to me so I said to myself you’re doing something right here. I’ve been doing that now for five years and I just hope if I’m spared I can do another five years.

How have you found being involved in the development of Selfhelp4stroke?

Bill: Well to me it’s an honour and a privilege because I know it’s going to help so many people that can’t get to these classes. It’s a great thing.

John: Well, first of all I thank Chest Heart & Stroke Scotland for giving me the opportunity to be as much involved as I am. I also think that the, it is such a , it is going to make such a difference to so many people. That I feel if I can make a difference to one person’s life after stroke then I’ve achieved something, after my stroke. I also have to say that I think that on the lifestyle course one of the things that I stressed before getting involved with Selfhelp4stroke was that I wouldn’t want it to be that it curtailed those courses for other people and I was assured that it wouldn’t be curtailed that this was just going to be yet another tool to assist people with stroke. Now I’m well involved with it, I do believe that this is going to be the way forward and it’s going to be enormous benefit to people.

How will Selfhelp4stroke help others?

John: I think the, most certainly the exercises, most certainly seeing other peoples examples, so people can see they’re not alone. I think that the encouragement that SelfHelp4Stroke gives its using like minded, like affected people. Now we know everybody’s stroke is a very individual thing but there’s similes that you can draw between certain individuals. I think people will look at that, look at the various sections, cause there’s quite a number of various sections that people have worked on and be able to pinpoint and choose things to actually manage their exercise regime, their fitness levels, their emotional levels and also different ways of doing things to achieve the same thing and also I understand that the lifestyle management somewhere along the line will be there in a computer based form so people can do it in their own home.

Final thoughts about Selfhelp4stroke

John: Oh, I highly recommend it, not because I’m that involved in it! But I just truly believe in it from the bottom of my heart. I just think this is going to make such a difference. If people give it a chance and work their way through the sections, they will see an improvement in themselves. It might not be an enormous improvement first of all, but you’ve just got to give it a chance and each little bit of movement and each little bit more energy that you get, the better your life becomes.

Thank you to Bill Rodman & John Fogarty selfhelp4stroke steering group members.

Have a look at the video below to find out how selfhelp4stroke was developed.

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Self-management groups are often used to help support people manage their long-term condition. These groups offer advice, information and peer support and are lead by health professionals. People who attend self-management groups following their stroke report positive changes to their wellbeing and quality of life.

An idea came from one of the group leads of an existing lifestyle management programme in Lanarkshire. With the increasing use of tablets, laptops and smartphones, why not develop a free online self management resource that anyone could use, free of charge? Chest Heart & Stroke supported this idea and managed to secure funding from the National Advisory Committee for Stroke to develop it.

So what did we put into Selfhelp4stroke? The best people to ask were the people who would be using it. We travelled the length and breadth of Scotland, attending some lifestyle groups, clinics, stroke support groups and people at home to find out from them. Through questionnaires and interviews we were given a lot of good ideas.

After going through all the ideas, we managed to group them into 5 sections, with each section having subsections. Now all we had to do was write it!

Over 60 authors were involved in writing Selfhelp4stroke. Health professionals with specialist knowledge in stroke from all areas of Scotland, Researchers from universities, Self-management organisations and charities all made sure the information we were providing was up to date and recommended. More importantly people who had a stroke were involved at every stage to write from their experiences.

Selfhelp4stroke was put together by the Interactive Content Team, based at Edinburgh University’s Learning Teaching and Web division. With their previous experience in developing other websites for Chest Heart & Stroke Scotland they were able to advise us on how to present our information. Making the website as accessible as possible was very important. We needed to make sure that the language was right, instructions were easy to follow and Information was presented in different ways. An expert team of health professionals, people who had a stroke and web content developers sat in a group overseeing this. The website was always getting reviewed.

The personal touch was very important to the people we had asked about selfhelp4stroke. They wanted to hear from other people’s experiences and be guided through the site. Many people came forward to share their experiences. We even filmed a guide for the website (John) who is with the user every step of the way.

Before being ready to use, selfhelp4stroke was critically reviewed by stroke groups around the country and also by a number of experts in self-management and stroke. After a few alterations it was good to go!

We really hope you enjoy using selfhelp4stroke and that it helps support you on the road ahead. Go ahead and help yourself to selfhelp4stroke !

For all the people involved in the project see our Acknowledgements page.