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Asthma

Support and support groups for asthma

Here we look particularly at the value of asthma support groups and meeting or knowing other people with the condition. A few people we talked to said that their GP or asthma nurse had asthma themselves which meant they had real experience of living with asthma and understood how it felt.
 

Mark’s asthma nurse has the condition herself. He says she really understands, because she knows what it feels like.

Mark’s asthma nurse has the condition herself. He says she really understands, because she knows what it feels like.

Age at interview: 49
Sex: Male
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It does help a great, great deal to actually have you know, that talk and what, what actually helps even more is the nurse that I see, she actually has asthma herself. Yeah, asthma and hay fever, yeah, so you’re not going to get any better help or understanding than from the person that’s on the other side of the phone, or you’re sat there talking to, with what they’ve been through, right, then you’re going to get the best understanding and help that you can.

Yeah, that’s a good point. So someone who’s been through it?

Because there’s that, you know, when you have a problem, right, when you’ve got two people who have got the same problem you’ve got that bond there where you know you’re going through the same, right, and you know that whatever you say or do then you’ve been through it. Right. And that is the difference between say, seeing an, another person, like say you’re seeing another nurse, they give help and understanding, right, and what to do, but they don’t have the problem. And mostly I find that you know, you need somebody who has that problem, right, say like asthma, right and you know, who can give you that bit of extra nudge and that bit more help.
 

Stephen’s GP has asthma himself and Stephen is encouraged to see how he has not let it affect his life.

Stephen’s GP has asthma himself and Stephen is encouraged to see how he has not let it affect his life.

Age at interview: 25
Sex: Male
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Did you find the GP helpful?

Very helpful indeed, yeah. He he’s actually an asthma sufferer himself.

And he explained he’s got two kids and they’re the same, two young fellas, but he’s also reassuring at the same time, in that I am now twenty five and himself was only diagnosed when he was twenty five and again, an active man, keeps himself fit and he just explained how it hasn’t hampered his life, he’s had it for, I don’t know, I’m guessing, thirty years, going by his age and he hasn’t let it affect his life. You know, he takes it in the morning. He forgets about it and he gets on with it.

He stays fit and healthy; it’s again, positive mindset.
Asthma UK is the main support organisation for people with asthma. Many of the people we interviewed found the website helpful as a source of information about asthma. They provide comprehensive factual information, some personal accounts of living with asthma, an online forum, Twitter feeds and Facebook groups where people can contact and talk to others with the condition, and an advice line on which you can phone to speak directly to a specialised asthma nurse if you need help, information, or just a ‘sympathetic ear’.

Finding factual information is really important, and some people like Dee felt that hearing other people’s stories was helpful because, "You’re actually listening to not the official line out of the text book, but you’re listening to “what does it mean to you in your day?” And that’s maybe a lot of what people would like to see.’ Peter commented, ‘I’ve got a high regard for my GP practice, but they’re not the only source of wisdom."
 

Jenny’s best friend has asthma too. It can be good to have someone to ring up and talk to, who understands what it’s like having the condition. [TEXT ONLY]

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Jenny’s best friend has asthma too. It can be good to have someone to ring up and talk to, who understands what it’s like having the condition. [TEXT ONLY]

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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My other best friend is also asthmatic, she lives where we used to live and she’s the same, is she a little bit older than me, and she’s got, but she’s got two, she’s got twins, who are now 18 because she had them quite young and they were actually what kicked off her asthma. She’s never blamed them, but you know, she wasn’t really asthmatic before she got pregnant. But she’s brilliant, I mean, she’s a Salvation Army minister, so she’s and she’s just so chilled and you know, sort of God’s got a purpose for her, so… but, and she’s brilliant too because you can – you need somebody who you can ring up and say, “I’m having a really bad day” or, “Oh, for heaven’s sake, I’m puffed to put me socks on”, you know, and you’ve got somebody who can understand.

Who knows what you mean.

Yeah.
 

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Online forums can reassure you that you’re not the only person living with the condition managing similar symptoms.

Online forums can reassure you that you’re not the only person living with the condition managing similar symptoms.

Age at interview: 62
Sex: Female
Age at diagnosis: 57
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Well I think there are a lot of benefits actually. You can always see there’s someone with the same symptoms as you or, you know, if not worse than you kind of thing. And that’s that is one of the things I think about online forums is that they can be quite reassuring in the sense that you’re not the only person that’s living with this condition and these symptoms and it also... I mean the thing about asthma is it’s, you know, sometimes one of the things I felt, when I saw the consultant at the hospital was, it was a kind of it’s a your fault situation almost, you, you, you could have stopped yourself. I mean she still put in the notes ‘smoked ‘til 1978’. Now I know there was no way that the few cigarettes I smoked, you know, up ‘til 30 years ago have caused this, because throughout my forties I was as fit as a lop. You know, I might have had the conditions there. So I think it’s kind of supportive to be able to share with people this, it’s kind of an empowering experience I think to be able to share with people that, what other people have been put in the same situation and you know damn well it’s not your fault, you know, that it’s the fault of the environment or you know, your genes or your family history or whatever. But I know it’s not my fault that I’ve got this condition.
People explained what they gained from hearing others’ experiences, both face-to-face and online. Benefits include getting practical advice, tips and information, help in adjusting to having the condition, and general emotional support. As Val says, it can be good to know you are not alone, and sometimes being able to share negative feelings with someone else who can understand is a relief. While Val felt she got most benefit from people whose experience of asthma were similar to her own, Peter said seeing other people much worse off than him can make him feel better about his own situation.

On the other hand, not everyone wants to meet or chat to other people with asthma; just having an illness in common does not necessarily make a good basis for friendship. People talked about not wanting to dwell on their condition or be defined by it. Sometimes people could find it depressing or frightening – Belinda, for example, had been shocked and saddened by the death of one of her friends when she was at a school for children with severe asthma in the 1960s, even though in other ways the school was a supportive place to be.

Online forums and websites which post people’s stories offer a way to benefit from others’ experiences without having to meet them or take an active part oneself.
 

Ann uses the internet to find information and likes to see videos of people talking about their experiences ‘but I like to be able to click the stop button’.

Ann uses the internet to find information and likes to see videos of people talking about their experiences ‘but I like to be able to click the stop button’.

Age at interview: 55
Sex: Female
Age at diagnosis: 53
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I made a deliberate decision to stay away from forums and chat sites because I just felt for me with this tendency to have a over-active imagination that that just was not helpful.

So do you think, there are benefits in sharing experiences on the Internet or I suppose what I'm getting at is, is there, is there a format for sharing experiences that would be more acceptable to you in that sense? I mean would you rather just read about other people's experience rather than joining in and chatting and taking part in a conversation for example?

Yes. Yeah. I'm quite a reflective person that's my style really and I don't want to be put on the spot, I prefer to think... about what my opinions are, what my feelings are. I'm quite happy to talk about all those things, but I like to turn it all over in my mind. So, I like to have information in written form. I like to see short videos and I like to hear people talking about their own experiences. But I like to be able to click the stop button.

So, it's not so much the interactive experience that you’re interested in?

No, no. Not for me personally.

Yes.

I'm sure that it is very useful for some people but it's just not for me.
Some people felt inspired to get more actively involved in sharing their experiences. Asthma UK offers people opportunities to volunteer in different ways such as fundraising, raising awareness, campaigning for services and promoting the work of the charity, and helping advise experts and health professionals on policy issues. People’s motivation to take part in these activities varied but often it was a case of wanting to offer support and help to other people and to be able to ‘give something back’.
 

Peter has trained as a volunteer speaker for Asthma UK. He likes learning more about asthma and helping others, but he has also been helped by meeting others with asthma and hearing their experiences.

Peter has trained as a volunteer speaker for Asthma UK. He likes learning more about asthma and helping others, but he has also been helped by meeting others with asthma and hearing their experiences.

Age at interview: 62
Sex: Male
Age at diagnosis: 45
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Probably about four or five years ago, hm, yes, five, six years ago, I started to get a bit more active with Asthma UK I trained as a volunteer speaker so I go about talking to anybody who’ll listen, telling them specifically about asthma and trying to spread the word about it.

What prompted you to do that? What prompted you to get more involved in that way?

Enlightened self interest I suppose. I thought it was a way for me to learn more about it. To meet other people with the condition which would be helpful to me which it is and trying to do a little bit to help other people. That, that’s fine as well.

What do you think there’s benefits in sharing experiences?

Yes, I do I mean I think of myself as a fairly robust sort of person and I can be self reliant and so on and so forth, but I joined, when it first started, something which Asthma UK started four or so years ago called a Users and Carers Advisory Forum bringing people together from all over the country with different degrees of asthma. And feeding back to Asthma UK on Asthma UK’s proposals and formation of policies and strategies and so on, feeding back on the variety and wide variation in types and quality of treatment around the UK. And try to generally help formulate Asthma UK’s policy. So that little group became inevitably because people have that one thing in common, becomes a support group and I did find it cheering to know that you’re not on your own and as always you meet people a jolly sight worse off than what you are and oddly that makes you feel better or you’re thankful you’re not as bad as they are.
 

Eileen is a member of a group called ‘Speak up for Asthma’. She feels it’s important that people learn from each others’ experiences, and to help doctors and researchers improve care for future generations.

Eileen is a member of a group called ‘Speak up for Asthma’. She feels it’s important that people learn from each others’ experiences, and to help doctors and researchers improve care for future generations.

Age at interview: 62
Sex: Female
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I am involved in two ways. I’m, firstly I was involved as a, a SUFA which means I Speak Up For Asthma. So groups can ask me to go along and talk to them about the work of Asthma UK in the main, so I’m giving people statistics and information that they can find more information that is relevant to them.

For instance, they have a fantastic website which has a, absolutely wonderful children’s area that’s pitched at children They also have an area where people with asthma do talk about how they’re doing with it and carers also talk about how they’re dealing with it.

And I’m also part of the Readers’ Forum, so when they’re having new information coming out it will be sent to me, and, and the others on the Forum and we evaluate the information and send back our comments on it.

I’ve also been involved, they have these big Melas every year, within the Asian community to try and get over the message to them that help is available and they do all these pamphlets in sort of Gujerati and all sorts of languages.

And I’ve been to a couple of those and talked to people.

Is that something that’s that, that that community isn’t quite so good at managing ...

Yeah.

..the symptoms of asthma?

Yes.

Yeah.

Yes.

And what made you want to kind of be so, you know, helpful in supporting in that way? Is that the kind of person you are?

Yeah. I think it is the kind of person. The kind of person I am. I feel it’s important that we give as much as we can so that doctors and researchers can learn and therefore improve, if not for us, for the next generation.
People expressed particular concerns about the importance of raising awareness in schools, not just for children who have the condition, but so that both teachers and other children will understand more about it.
 

Tomas is a member of Asthma UK’s youth forum who give the charity their viewpoint about living with asthma, and get involved in a variety of different activities to support young people with asthma.

Tomas is a member of Asthma UK’s youth forum who give the charity their viewpoint about living with asthma, and get involved in a variety of different activities to support young people with asthma.

Age at interview: 16
Sex: Male
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You started to find out more about this charity and which type of work are you doing with them?

Well I’ve been on a youth forum in an, the office in London which is just a group of about ten to twelve children around the ages of thirteen to seventeen and gathered together about every three months I think. And we’ve got [name] and he leads in. He, he talks through new things he’s going to bring up and. And it’s up to us as, like the children to tell him what we think will work and what we think is good or what we think is bad or what we think won’t work. And if anything is to change and if something needs to change then he takes our advice and he changes it. So we’re just like basically people who tell him what to do really, like what he needs to improve on and what we think is good.
 

Esther joined Asthma UK because she wanted them to organise a talk in her daughter’s school about asthma. She has encouraged her daughter to contribute to the Asthma UK website by sharing a positive story about how she has adapted to having asthma.

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Esther joined Asthma UK because she wanted them to organise a talk in her daughter’s school about asthma. She has encouraged her daughter to contribute to the Asthma UK website by sharing a positive story about how she has adapted to having asthma.

Age at interview: 41
Sex: Female
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We’ve looked at Asthma UK because we’re members, and we’ve actually contributed something on one of their websites, but no, I think the only reason I went to them was because I wanted, would quite like somebody to come in and talk to the school about it, because I think there’s a lot of, I think children need to know more about it. I don’t think lots of people really understand what the triggers are and what’s going on. And of course there are loads of different triggers, but for someone people, for us it’s cold weather and having a cold. But you know, I think there’s a lot of mystery around it, and I think I wanted somebody to come to school and talk to them.

There was an Asthma UK thing did happen recently. They had this sort of map of England and you could put your story, whether it was a sad story or a happy story. And ours was a happy story because we’d got better and we put that online, and [daughter] really enjoyed doing that as well, which I felt was important for her to be able to express her feelings about it, which is partly why I wanted her to take part in this. Because I think it’s good for her to be able to think about it and express it, because she’s suffered really and getting it out is good.

And there’s not always the opportunity is there to talk about it, what happened to you?

No, who can you talk to? No.

No.

So telling your story I think is a really important thing in life and giving her an opportunity to do that I felt might help her.

Do you think there are benefits or what benefits do you think there might be sort of sharing experiences, either on the internet or personally?

I just think there’s no doubt a benefit to being able to express yourself, to come to terms with it, to help you. How do you tell somebody else, you know, you are telling a story yourself and you’re looking at what happened and you’re coming to terms with it. I think that’s really important. I think, you know, it has felt really unfair that she had asthma and she couldn’t run around like the other children, and she’s just been able to really say that. And so letting her express that feeling will get that feeling out, and she won’t carry it as a burden. I don’t want her to be bitter and twisted when she’s big. I want her to get it out now. I’m a strong believer in expressing how we feel.
Some younger people we interviewed had taken part in a ‘Kick Asthma’ holiday organised by Asthma UK. Lisa remarked that as a teenager she had found it really helpful watching a DVD her nurse had given her that showed other children talking about their experiences. As Lisa pointed out… "If they’re a similar age, it’s easier for you to understand". Social media such as Facebook and Twitter is also a big source of support for many people (especially young people) helping to provide information and a way to connect with other people who have asthma. 
 

David volunteered at a Kick Asthma camp as part of the Duke of Edinburgh award. Seeing that other kids have the same kind of troubles and worries is important.

David volunteered at a Kick Asthma camp as part of the Duke of Edinburgh award. Seeing that other kids have the same kind of troubles and worries is important.

Age at interview: 18
Sex: Male
Age at diagnosis: 5
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I found out about Kick Asthma UK through doing the Duke of Edinburgh awards. ‘Cause for my gold Duke of Edinburgh award I had to complete a residential section where I have to spend a week away helping like helping at a youth hostel for example. So I found it on the Duke of Edinburgh Award website and then I contacted [name] and basically he wrote back to me and gave me information about it and I said I wanted to sign up as a volunteer. You know so go down and fill in a few forms. So I found out basically through [name]. It’s how I found out really about Kick Asthma and he was really helpful. He’s a really good manager.

Kick Asthma what’s that?

Kick Asthma. Oh it’s a, it’s an organisation which is set up to help kids with asthma, help manage their asthma. But it’s not only asthmatics, eczema and anaphylactic reactions, allergic reactions to things. And yeah. So basically it’s. The holiday’s run, it’s like different holidays spread out through the summer each year at different locations like five. And then kids from all across the country could come to them and like learn about their asthma and mingle with kids who have the, the same kind of like disabilities who they may not be used to hanging around with to see that other kids do have the same kind of like, same kind of troubles and worries that they do. So it’s basically just to reassure them that they’re not the only ones who have a certain type of reactions. Basically it’s to reassure them, yeah, they’re not the only people who have like worries about asthma and eczema.

But yeah it’s a really good organisation. The volunteers and leaders can like help like help the kids, like feel reassured about their asthma and do activities where they can get involved without worrying about their asthma. So it’s basically just keeping it in check.

Also for the more, more serious cases gives the parents a week off without having to look after the kids knowing that the kids are in safe hands with this organisation. Gives the parents time to like refuel. So it’s, so yeah it’s a really good organisation.
Mary set up and ran a local support group for about 10 years. Julie set up a similar type of group in her local area. Susan is a trained first aider and she uses her own experience of having asthma to help her train other people. ‘I actually train first aiders in treating people with asthma now because they like to have somebody who knows what it’s like’.

(Also see ‘Finding information about asthma’, ‘Dealing with health professionals’ and ‘Managing asthma –reviews and action plans’ for more about the importance of having a strong relationship with health professionals).

Last reviewed August 2017.
Last updated August 2017.
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