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Stroke

Support from patients and support groups

Nearly all of the people we talked to had at some point been given information about a support group, although some, mainly older people, were not aware of any. Most support groups were in a local town; many are independent, although The Stroke Association runs some groups, as do Different Strokes, who cater for younger people affected by stroke. Some of the people we talked to had been instrumental in starting support groups in their areas, or had offered their services as volunteers. Support groups are also sometimes run by staff at stroke units who may also offer exercise or gym classes. Connect is a voluntary group in London for people with a communication disability following stroke (called aphasia), and offers advice and mentoring for people with communication difficulties.

The common experience of stroke can break down social barriers - for example a 67 year old woman had established mutual support with a 38 year old man - and others commented that they had made friends with people from different backgrounds.

 

Enjoyed meeting people from different backgrounds in hospital and admired the determination of...

Enjoyed meeting people from different backgrounds in hospital and admired the determination of...

Age at interview: 58
Sex: Male
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Yes, I met some, I met some smashing people actually, we, we were very sort of, I mean, we were right across the class range, I mean, you know, very different bunch.

Did that help in any way to, you know, motivate you to, to get better? Was there any competition or anything like that?

I don't think it was that exactly, there was every so often, we had little, sessions for people who could stand and, we would sort of, we would play, sort of routine tennis, you know with bats and balloons back and forth. So that was quite a bonding exercise but it wasn't competitive as such. No most of the people, I'm talking now about the [the hospital]. Most of them were, were a good lot, good fun. And we had, we had a few laughs, bit like a kind of grown up boarding school really. 

How about, good examples, you, you know you mentioned about the guy at the gym who was a very good example of'

Oh yes, oh yes he's' Now he was, he would put me to shame to be honest. He because the sheer amount of physical exercise he did and was determined to do was so great that in the end he decided he, he ought to become a gym instructor and was a good one too. And he'd had, if anything I think, a worse condition than mine in that he'd lost a lot of speech ability as well has having lost a lot of mobility. But he'd obliged himself to get rid of his stammer or his, you know, his speech difficulties. And had really, really, really worked hard at it. Younger than I am, only in his thirties. Very, very admirable guy. Really amazing. 

 

Apart from a couple of members of his wife's family his only contact with people who have had...

Apart from a couple of members of his wife's family his only contact with people who have had...

Age at interview: 54
Sex: Male
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I was wondering if you'd had any contact with any support groups for people that have had a stroke at all or looked up any information about strokes?

Well' apart from actually speaking to people, there are 2 or 3 members of [my wife's] family have had strokes, actually died from strokes. It seems to be kind of, inherent, if you like, you know. Her mother had a bad stroke 2 years ago and that left her with no speech the only other people really I've come in contact with is, has been at the cardiac gym the rehab gym, and not just stroke patients but all kinds of patients but stroke patients have been there, you know, and it's very, very interesting to speak to, you know, people that's had the same kind of injury as yourself, you know, it really is, it's very enlightening, you know. And the likes of, you get a talk after the cardiac rehab gym, you get a half hour, half hour talk, be it on diet, be it on stress management, what causes stress, how to beat it , heart problems, what causes it, how to beat it, you know, strokes, what causes them, how to beat and they're really, really interesting. Really interesting. And you get a talk, we had a talk from a, the pharmacist in the hospital and explained how, the difference between heart attacks and angina and strokes, all that kind of thing, you know, and it's very, very, educational, you know. And it's been a great help. It's been a great help with, with diet and your exercise and drinking liquids and stretching various parts of your, your legs and, you know. Aye, it's been very, very education. Very, very good.

People who enjoyed attending stroke groups often emphasised the value of being able to talk with people who had been through similar experiences - some saying that it was impossible for anyone who had not had a stroke to understand what they were going through. Groups often included a social side and arranged trips, fund raising events and educational sessions. Some groups focused on exercise or gym classes and all offered an opportunity to meet other stroke patients.

 

Gains a lot from the two support groups he attends where he enjoys the friendly and non-...

Gains a lot from the two support groups he attends where he enjoys the friendly and non-...

Age at interview: 68
Sex: Male
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But I say I'm very comfortable when I've got my, my groups, my group. We have 2 groups. One is the stroke, stroke association, that's, what we have a, there's about 20 of us and 4 of us in little, one table and we all, we're all given little tasks, the task is something like perhaps a topic, what you think about this and the idea is that we just talk and of course we have a helper. These, they're not, they're not trained other than just trained, trained that way. They're not sort of professionally trained, just good helper, helping and they just help us and the idea is that they will just sort of get us going, you know. So of course we're all trying to do that and I really enjoy that because it's 2 hours, we have a cup of tea and we have a raffle and we have a good laugh really. It's great and we've got a good helper and we are, I find that's fine. So I come away after about 2 hours and boosted by it, you know.

I think back to the groups, you know, the groups I go to, they really, all the time, they're really, they're smashing. That's really enjoyable that where you can you can get the attention and they'll listen to you and you'll listen and you tell them the same story again, it doesn't matter. It, it's terrific and there's no, there's no judgement, you know, everybody's sort of friends together, you know, that's really nice, good.

 

Finds it helpful to meet other people with aphasia at Connect meetings and found lots of other...

Finds it helpful to meet other people with aphasia at Connect meetings and found lots of other...

Age at interview: 34
Sex: Female
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What, tell me what you do when you go to the meetings?

A coffee. Well the, I had juice because I can't Fanta and lemonade, ugghh, a stroke is strange, I don't know but anyway. Chatting and conversation. 'Ah hello, hello' and, because [one of the men] is a lively one' so upstairs and the group divide' and talk about, you know, books or film or, you know, literature, you know. You know, the Queen, you know. So, and all of us in the circle is and then' and coming altogether and' running up, you know, the' I can't say it, you know the but, anyway.

Is it helpful to meet other people that have the same experience as you?

Yes. Exactly the same as me. Aphasia. One side of my body, well, the different other side of the body but I didn't know because Australia only 2 or 3 got it but' lots of people had aphasia on the right side, yeah. 

So it was helpful to meet other people?

Yes. Finally, finally. And numbers, you know, I can't add up, you know. Different. Yes. Finally. This is it. Connect [laughs].

Carers and spouses also sometimes appreciated the opportunity to meet up at support groups - one woman pointed out that the carers always seemed to be wives at the group she and her husband attended. 

 

They used to attend a stroke club in London which provided exercise and support for people who...

They used to attend a stroke club in London which provided exercise and support for people who...

Age at interview: 62
Sex: Male
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Husband' I notice up here in [where we are living] that lots of people, older folk with scooters for example, really don't pay much attention to anybody else. You have to wonder what, why they are like that. I think it is because they are encouraged all the time to think about themselves rather than other people. I was a member of a stroke club in North London for 2 years and I think that really helped keep things a bit in focus because you realised that other people are a lot worse off than you and their carers too have a difficult job.

Wife' I, and, but this day when he went, it was a very unusual stroke club in that it was, it lasted for the whole day and they had exercise, an hour's exercise in the morning and they took their sandwiches and then they'd have a talk or games in the afternoon and so it gave me quite a few hours on my own. Although, to start off with, we went together and in fact the first day [my husband] went on his own it was a bit like first day at school, he wasn't too happy about going on his own [laughter]. But, it was good because I met other wives who, it always seems to be wives who are in the caring situation and you could compare with them and as [my husband] said, you, he met people who were worse off than him in, in different ways. So you, it puts things into perspective. 

However, some people who had attended support groups had been disappointed by the type of activities on offer, or felt they had little in common with the other members. Meeting people who had had repeated strokes could be very worrying or could dent their own optimism about their recovery. 

Support groups can also be dominated by one or two strong personalities - one woman commented that she found the man who ran the support group an unsympathetic 'control freak'. A married couple thought that the local group that they tried just did not 'gel'. On the more positive side some made friends through the group with whom they continued to have regular contact, even after they stopped attending. 

 

Was disappointed that the Different Strokes support group he attended was very focused on fund...

Was disappointed that the Different Strokes support group he attended was very focused on fund...

Age at interview: 56
Sex: Male
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Well, as far as support goes, it wasn't a case of support with Different Strokes. I was kind of disappointed with the Different Strokes meeting. I mean, I went there and there was, was a, was a good turnout, a big turnout but what I found was they were more or less talking about, I was wanting to talk about my experience and get experiences back from them and there was very, very little of that. What I did get was all this fundraising ideas. That's what they wanted was fundraising ideas, you know, we'll do this and we'll do that and I wasn't wanting that. Go away to some place for the day and that's not my forte, you know, I'm kind of independent that way. I was wanting to go my own places and what not but that's what I found with the Different Strokes meetings. I was very disappointed with that. I don't go to them any more. Maybe because there was a lot of people there, you know there was one lady that I still keep in touch with. I take her to the gym twice a week with me and that's the only person that's really in the stroke group that I kind of tied to, you know what I mean. Talking to her now when I go back and forward about her stroke helps me too, you know, which she can do, she went through what I can do and what I went through and we bounce off each other and that's what I was wanting at the stroke meeting but I never got that. I only got very, very little at all. Only 4 people there that gave me information or experiences, you know, that's, that's what I went for. I wanted to meet people who had the same thing as me and see how they cope and I never got that from the Different Strokes meeting. So I'm afraid I don't go now. 

 

Felt that she had nothing in common with the people at the stroke group - who all seemed to be...

Felt that she had nothing in common with the people at the stroke group - who all seemed to be...

Age at interview: 41
Sex: Female
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So can you tell me about your experiences of perhaps using a support group?

It was suggested to me that it might be helpful to visit a support group and there was one locally, well actually in Coventry, which is not too far away from here which was intended for young stroke survivors as they like to call us. So I thought, well, it might be helpful. And the only, well it only helped the other people I think it's been a disaster for me. I went one, the Saturday before Christmas and I remember I went and I got all nicely dressed up, my high heels, make up, the lot and it was full of people who absolutely, it was morning and it absolutely stank of drink most of, which I couldn't believe and they all smoked which also I couldn't believe. A lot of them were on their fifth or sixth unexplained stroke, which I really did not need to hear, that people were having over and over perhaps drinking and smoking perhaps they were and it was horrendous and I know my GP that I work for said to me afterwards, 'There is something weird about people getting together when the only thing they've got in common is an illness' and he was so right. Never ever would I do that again. Never. Because it was true. All that the people were interested in talking about was their illness. So it was nothing in the way of a support group at all and it just made me feel dreadful because I thought, 'These people have had 3, 4, 5, 6 strokes, when am I having my next one?' But it made them feel wonderful because I'd had one and looked great [laughter] so did them some good and not me. 

It was not unusual for people to be in two minds about whether they wanted to spend time with other people who had had a stroke. Many formed a temporary bond, which was sometimes powerful, with the people they had met in the stroke unit. 

 

Has some mixed feelings about joining a support group even though he likes the idea of a group...

Has some mixed feelings about joining a support group even though he likes the idea of a group...

Age at interview: 54
Sex: Female
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Can you tell me how you found out about that and, you know, if you've got any other experiences using support groups? 

I liked the idea of young stroke survivors, because it's very different to, with respect to older people, it's very different when you're 41 and disabled to when you're 75 and disabled. You've got a whole different range of issues to be dealing with because you're younger.

I mean, some of me thinks, 'Well do, what help will I really get from being around stroke survivors?' Now, maybe I'd get a lot actually because it's, it's like having one foot where I'd like to talk to people who've had strokes and then on the other foot that says, 'Well [own name]', one foot where I'd like to talk to people who've had strokes and the other foot that says, 'Well, really, you need to get on and go, move forwards, and integrate that into your life'. And I happen to have a close friend who has had a stroke, a major stroke as well. So I mean, he and I are in quite regular contact, so we can talk to each other about, how fed up we get with not being able to walk properly [laughter], or people pushing us in shops or, the sorts of things that stroke survivors want to moan about occasionally or joke about. And I prefer that with a friendship. Yeah. 

 

Developed a strong bond with the women she was in hospital with and feels the experience has made...

Developed a strong bond with the women she was in hospital with and feels the experience has made...

Age at interview: 44
Sex: Female
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You get very, very close to the ladies either side of you because they tell you about their lives and about their past and about their children and it's very, very hard because you get quite attached to them and a couple of them passed away whilst I was in there and I found that very hard to deal with because it's something, I had lost members of my family but not spoken to them at 10 o'clock at night and had a conversation and then lost them during the night and then going and saying 'Come on [name of another patient] eat your Weetabix' and [name of another patient] not there any more so the whole process of being in hospital was completely life-changing for me.

It's made me a much more humane person. It's made me much more aware of other people, especially older people and people who have pain, which is something before I'd never had to deal with. I now understand a lot of the issues if you see an old lady and she's finding it difficult getting on a bus, to help and to sit and to chat. I find it much easier now to talk to older people , I think it's actually, in a way, made me a far nicer person maybe because I've had to take the time out in my life and readjust totally my whole values to my life and it does bring it down to ground zero and you start from scratch. 

Meeting ex-patients who were recovering well could be very encouraging. Seeing patients who were very disabled was variously described as depressing or a reminder that one was not so badly off. One woman suggested that it would be very helpful for people who were about to leave hospital to have the opportunity to talk to someone else who had dealt with the stark realities of coping at home.

 

Was initially encouraged when a woman who had had a stroke came to talk to her in hospital but...

Was initially encouraged when a woman who had had a stroke came to talk to her in hospital but...

Age at interview: 66
Sex: Female
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Yes. I'd probably been in, I'd been in the hospital bed probably, I think it was about 2 days before they actually asked this lady, who'd been a patient, who was a patient in the hospital, to come over and talk to me and she'd had a stroke and they said that this lady had had a stroke and I thought, 'Well, you know, this lady is standing by my bed, she's had a stroke' and she was going, she was going home and so I thought, 'Well, you know, that's really good, she's been here a little while, she was going home and it was possible that I was going home at the end of that week' so I, I thought, 'You know, things were really not too bad' and then I was told that it would be a very long time before I went home from the hospital and that's when I think I realised that something very serious had happened to me and really, I suppose it really hit me then. I suddenly realised that things were pretty bad.

How did you feel, you know, that they'd done that, that they'd brought somebody to see you'?

I think perhaps that was wrong. I mean, I understand why they did it and I, I'm not really criticising them because I think they felt that I couldn't talk to anybody. Talking was very difficult for me in those first few days. I could talk but it actually sounded as if I was permanently drunk I suppose. It was very slurred and I found it difficult to get the words out and so I think talking to somebody who actually stood there looking quite normal, I thought, 'Well, you know, I shall be like that in a couple of days' and of course it doesn't work out like that. I think they wanted to, I think they wanted to encourage me and because they saw that I felt so helpless, I think they wanted to give me some sort of, some sort of hope I suppose and so they produced this lady who was going home in the hope that it would make me feel better. Whereas in fact when I found out that I wasn't going home, it certainly made me feel an awful lot more miserable. So, but I think they had my best interests at heart. It's just that, you know, it was a bit of a shock when I found out that I wasn't going to go home in a few days, so that was not so good. 

Some people told us that they were aware of local support groups but were quite certain that they would not want to go. One man explained that he was a private person, another that he was not very social. One said that having a stroke is 'not something you brag about'. Others suspected that the people who attended groups were older, or had more severe problems, or said they just did not feel the need to meet other people who had had strokes. A man whose GP had told him about the Different Strokes group decided that, although he enjoyed meeting people from many walks of life in the stroke unit, he preferred to concentrate on getting back to work and normal life. One woman said that she received all the support she needed from her occupational therapist. Sometimes people had enjoyed attending the group but found travel difficult, or had to stop going because they had other commitments on the weekday that the group met. 

While some people stressed how important they found it to meet other people who had had strokes, others commented that everyone's experience was too different to make comparisons or said that they preferred to mix with long standing friends. Because stroke is relatively common many people knew of someone else - perhaps a friend of a friend, colleague or relative - who had had a stroke. Other people who had experienced their own, different, health problems could be sympathetic and a valued source of social support.

Several people said that they had not yet been to a support group but thought that they might - an Asian man wondered if members of his community might find a group particularly useful. 

 

Wondered whether a stroke support group would be useful for other people in his community. Felt...

Wondered whether a stroke support group would be useful for other people in his community. Felt...

Age at interview: 74
Sex: Male
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Have you had any experience of support groups for stroke at all?

I begin to think that a support group would be very helpful, especially for Asians, it should be a helpful. We could exchange, we could talk about it, what is happening. 

But I definitely wish to see that stroke support group should be there. That would be better than spending more time in rehab because in rehab, psychologically, you are still in an environment which is technically surrounded with machines, with white collared doctors with stethoscopes which psychologically affect you, you are a sick man. 


 

Last reviewed June 2017.
Last updated August 2013

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