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 theres 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.

Did you find the GP helpful?

Very helpful indeed, yeah. He hes actually an asthma sufferer himself.

And he explained hes got two kids and they’re the same, two young fellas, but hes 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, hes 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.

Well I think there are a lot of benefits actually. You can always see theres 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.

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 peoples 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.

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 theres 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.

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.

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 weve got [name] and he leads in. He, he talks through new things hes 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 were just like basically people who tell him what to do really, like what he needs to improve on and what we think is good.

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. Hes 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.