Heart failure

Support groups

There were mixed views about support groups among those we talked to; some said they hadn't tried them and thought they were just not their 'sort of thing', while others said they were a lifeline. One woman said she found that sharing her problems with others in the group helped her and she enjoyed the social side of it. Others talked about the money support groups raised for hospital equipment and the social events they organised which encouraged people on their own to go out more. Apart from the social aspect of support groups, one carer said that his support group helped to keep him up to date with the latest research on heart disease.

Being in a support group helped her because she shared problems with other people.

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Age at interview: 72

Sex: Female

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Yes, I certainly do recommend the support group. We have an absolutely wonderful one here which started with a few people coming out of rehab, which they have today in a lot of hospitals, (they don't have it in all hospitals I don't think or they certainly didn't), and from that, to get people together with you know, the same sort of problems and you go and talk to people and instead of thinking, 'Gosh I've got this, I've got that', you speak to somebody else and they say, 'So have I', and it lessens it, totally shared. And you sort of think well she or he looks all right and it is an absolutely wonderful thing. And if you sort of mix socially as well, which our support group does, we have a tremendous social activities and combined with, of course exercises, walks and meetings where people talk about medical things, not always by any means. But you know, we get together and we see people, 80 year olds 90 year olds (well she is not quite 90 our oldest one but she's in her mid-eighties absolutely wonderful), whose has had the same problems as people in their 40s who think, 'Golly I won't get there..', but you can. We are all different though. Every single case is totally different. But it is a wonderful thing, support groups I think are essential.

She describes what happens at her support group and why she enjoys it.

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Age at interview: 66

Sex: Female

Age at diagnosis: 65

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When I was in hospital on one of the occasions, I found a leaflet on a stand, and it was about a heart support group for the local hospital, and I phoned them, and that's how I joined that and they're really brilliant, we meet once a month. We have a questions and answers session, they do have medics and nurses who come, but it isn't only about that, it's also about other things, guide dogs for the blind.

Two months ago they had John Woolley who was the little policeman who found the great train robbers, so that brings you into other things as well. But there's about 80, I think there's about 200 people in the group but usually about 80 to 85 go each month, and we have tea and coffee and we all meet together and we all have a bit of moan together. We all ask questions of these professional people, and then we do other things and we arrange social events. We've had 10-pin bowling, I can't do it but I did a bit of scoring for the others as well, it was good. I can't have the wine with the others but I can have my fizzy lemonade with a slice of lemon and some ice in, there's no harm in kidding yourself.

He attended one support group meeting and found other people's experiences gave him a bit of hope.

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Age at interview: 66

Sex: Male

Age at diagnosis: 64

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Have you ever thought of joining a patient support group?

I went to one at the Royal. I got a letter through saying they had these meetings so I went and sat in one. They were quite good, actually, there were a lot of people, well 8 or 9 of us there who'd had heart attacks in different stages of it, you know what I mean? Some of them had already had the operation to cure it but I never saw anybody who hadn't had something done about it. I was the only one there that they couldn't do anything about, you know... so... but I never spoke much at that meeting, I just listened because it was the first one I went to. I had a cup of tea and a biscuit.

Have you been to any more?

No.

Why is that?

I never got invited to any more. I never had a letter. You see, I don't know whether they still have them but you see, I was only more or less half way through finding out what they could do for me so I couldn't really talk about, I mean a lot of these people had had heart attacks and had bypasses done and things like that. But I was still, I was like a junior, I'd not long had my heart attack and I was still in the process of finding out what they could do for me and what treatment I could have and they didn't even know then that I couldn't, that they couldn't do anything about my heart, you know.

And was it helpful at all?

Yes, yes it was all right. It gave me a bit of hope, actually, because you know like one chap had got an allotment, mind you he said it took him forever to dig it, you know what I mean? I can imagine because I know how long it took me to dig that bit out there. But, and there was one chap who he'd had a bypass but he was only just getting over it, you know what I mean? It does take a few months to get over it, especially I think the operation in your leg is worse than the one on your heart, you know walking after that.

Several people we spoke to had been involved in setting up or running a local support group for people with heart failure, cardiomyopathy or implanted devices (ICDs). Some also acted as a ‘buddy’ by giving individual support to people newly diagnosed or newly fitted with an ICD. Not all support groups operate on a face-to-face basis. Some people we spoke with belonged to an online heart failure support group, enabling them to chat to other members over the internet or by phone, which they found helpful.

Mike set up a support group for people with ICDs; he also gives one-to-one support to people newly fitted with an ICD.

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Age at interview: 69

Sex: Male

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I’m particularly positive as a person, I do feel that although it was, it was, it was a dramatic, you know, thing, things have bounced, have actually come from it that, that wouldn’t have happened. So that’s how I feel, I feel at the moment, you know, so…

What kind of things?

Well, firstly that we started a group for people with ICDs, because when I was, I think the problem I had first was that I didn’t have anybody to talk to. I could talk to the doctors and the nurses but they hadn’t got a defib. So we had, I had a chat with one of the doctors and she said to me, “What about starting a group?” I said, “That’s a good idea”. So we started a group six years ago. Didn’t know what we was doing (laughs), as you do. And the group has got bigger and bigger and bigger now, you know. We’ve got a website now, we’ve got about 150 members, something like that. And we meet every three months and we get speakers like a cardiologists, we get dietitians, pharmacists, we’ve had a Buddhist monk come to talk to us about, about relaxing.

And, and then we’ve got, ah, we’ve got a buddy system where we, [city name] I shouldn’t say [city name] you know, the hospital will phone me up and say, “Can you go and talk to so-and-so, they’ve just had a defib put in and they’re absolutely terrified”. So my wife and myself go along and, and talk to these people about, you know, positive things. ‘Cos I think it’s, it’s difficult sometimes. Well it’s, personally I think it’s more difficult, it’s more difficult for the partner really because it’s frightening isn’t it? You know, so we go along and talk to these people and it’s, and it seems to be working, you know, and so we’ve done particularly well as a group, you know.

Once she had joined an online closed support group Beth found it reassuring to know there were people she could talk to about her concerns.

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Age at interview: 57

Sex: Female

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I’ve spoken to quite a few heart failure patients and we all seem to have a similar concern that you’re packed up, you’re bandaged up and you’re sent home and then there’s nothing, you’re just left with all these things going around and these little worries and little niggley things and you do end up building them up in your head. But once you become involved in a community, like I have with heart failure patients, and I know it’s a close community, and often we’ve had the same sort of fears and niggles, we can talk about it with each other. And last year when I was quite anaemic and feeling pretty low I got a couple of phone calls from people just ringing me up seeing how I was and, ‘Right we’re here if you need to talk to somebody’. And that was lovely knowing it was somebody outside of the family, outside of the medical profession who had been through what I’m going through, and I could talk to them. And that was probably more reassuring than talking to any nurse or doctor or consultant. And you know that they’re there for you any time of day or night, you can ring somebody and you get the reassurance you’ll need. And that’s what’s wonderful about charities and the communities that have, it’s like a family away from your own family that you can talk about anything to; that’s lovely. I’ll tell anybody get involved with a local charity, you know, find one, do your research, find a charity on the internet, get in touch with them and build those links and build that network and you will get the support you need.

Last reviewed April 2016.
Last updated April 2016.