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.
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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.
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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.
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."
Susan thinks chat forums can be reassuring because you can hear about how other people have dealt with things. They can answer questions you may have forgotten to ask the GP.
Susan thinks chat forums can be reassuring because you can hear about how other people have dealt with things. They can answer questions you may have forgotten to ask the GP.
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I mean, they’ve got quite, their website’s got quite a good, kind of just generally information but they’ve also got these forums. I’ve not used them, I’ve not posted there a lot but particularly when sort of things are changing or I’m maybe being given a new drug or it’s getting worse or I don’t know quite what’s going on, and kind of going on there and it’s kind of, it’s quite comforting because there’s lots of people with similar problems who’ve maybe tried the same drugs and they’ve got nurses as well that post there. So like you can post a question and a lot of the answers will be from other asthma sufferers which is really nice but also they’ve got nurses who answer as well. And so you might get responses from sufferers that are all about like how it feels and how, how they experience it and then the nurses might come in and say, “Yes, and you know this is the sort of thing that your doctor might do and this is what you can expect”. And so you can get those…
It’s like it adds an extra layer….
...kinds of things.
...to what you get from going to your GP practice?
Yeah, and it’s kind of, it’s not got that element of bothering anyone. And you can also, because you can search the forums so you kind of like, sometimes you can get an answer to a question by finding someone else that asked the same question. And then you can just, like read all the answers to that and read what people said and what people found. And sometimes that’s enough to kind of answer the query that you had. Like, you know, I’ve been prescribed this new drug, you know, how long is it going to take to work? Or, you know, what sort of things might you expect?
And it’s really good for things like that I think.
I think the thing is if you can find somebody that’s kind of had a similar problem to you and, you know, maybe, maybe someone who was where you are, maybe six months ago and then you can see where they are now after six months and you can say, “Oh actually that’s, that’s the sort of thing I can expect” Or if you’re going to be on a new drug or something, you know, some other new type of treatment you can see how other people found it, you know. Was it really difficult to take? Did it have horrible side effects? You know.
And like really silly things like, that you forget to ask the doctor like how long is it going to know, take before I know whether it’s working or not? And I always forget to ask the doctor that and I get home and go, “Oh, how am I, you know, they said to come back if it’s not working, and I forgot to ask how long it should take”. And you think, “Well I can’t really ring them up for just that”.
So you think, “Well, maybe I can find out”. And then you find out that everybody’s saying, “Oh well, you know, it started working within two weeks”. Or, “It started working within three weeks”. And you think, “Well OK, so if it’s not working by like three to four weeks then it might be worth going back to the GP”.
And so it’s kind of like the little questions that you forget to ask, sometimes you can find people that either have asked them and somebody else has answered or somebody’s kind of put something up about, you know, when they had this drug and how it went. It’s like the tablet that I’m on, it’s one of those ones where everybody says, oh it’s either, you know, it either does absolutely nothing if you, you know, if it turns out that you don’t have a big allergic component to your asthma then it just doesn’t do anything. Or if you do have an allergic component it’s like miracle drug.
And, and that was really interesting to kind of, you, you, you saw all these people go, “Well it didn’t work at all for me but, you know, my mate or my, you know, my brother or whatever it was an absolute…” you know … “marvel”, And, you know, “It like changed our life”. And stuff.
And so it’s really interesting to kind of know, oh actually, you know, that it, if it doesn’t work for you it’s kind of, well you’re just one of those people it doesn’t work for.
And knowing kind of what to expect is really useful.
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.
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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’.
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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.
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.
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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.
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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.
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.
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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.
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.
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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.
(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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