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Asthma

Advice to others about asthma

We asked people what messages they would give to others from their experiences. A key message echoed by many interviewees was that although it might seem daunting to be diagnosed with asthma at first, particularly if you’ve experienced a serious asthma attack, you can control it rather than letting it control you. Nicola said, "It doesn’t have to take over your life", David’s advice was "learn to control your asthma and you can live a full life" and Eileen said, "It need not inhibit you in any way. But you have to make sure that you’re diagnosed, that you have the proper medication and that you take it." People were keen to point out that asthma need not interfere too much with your life if you take the right steps to manage it. They recommended that anyone diagnosed with asthma should be proactive and try to find out as much information as possible to help understand it, because as one person said ‘knowledge is power’.
 

Jan’s message to others is to find out as much information as you can, and take advice from health professionals about how to manage it yourself.

Jan’s message to others is to find out as much information as you can, and take advice from health professionals about how to manage it yourself.

Age at interview: 46
Sex: Female
Age at diagnosis: 4
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My message would be to understand it and I think things are less frightening if you understand it. To surround yourself with the right tools to try to manage it. So whether that’s the consultant, the right medication and to try and plan for doing what you want to do. So not stopping doing what you want to do, but to try and plan for it.
 

Alice’s advice is to ‘try to be active… proactive rather than passive, that’s a good motto for anything in life’. [AUDIO ONLY]

Alice’s advice is to ‘try to be active… proactive rather than passive, that’s a good motto for anything in life’. [AUDIO ONLY]

Age at interview: 59
Sex: Female
Age at diagnosis: 18
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Definitely get as much information as you can from all sources, particularly those on the Internet, that's really important. And be quite demanding of the medical services, get the best deal that you can for you. And I think you have to think about it a bit, what impact is this going to have on my life, on the people closest to me, and my wider circle of acquaintances? And accept that you may have to make some adjustments and obviously if it’s a thing like asthma, volunteer for Asthma UK, fundraise for them, do what you can to improving... I think try to be active, proactive rather than passive, that's a kind of good like motto for any, anything in life. 
 

Susan says, ‘You can live a normal life with it. It doesn’t have to rule your life’. Her advice is to go back and see the GP if you are still getting symptoms regularly, and be aware of your triggers. [AUDIO ONLY]

Susan says, ‘You can live a normal life with it. It doesn’t have to rule your life’. Her advice is to go back and see the GP if you are still getting symptoms regularly, and be aware of your triggers. [AUDIO ONLY]

Age at interview: 31
Sex: Female
Age at diagnosis: 18
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I think the thing is you can just, you can live a normal life with it. It doesn’t have to rule your life. And even though you might have to be on quite a few different medications to control it you can actually get quite good control where you’re not getting symptoms all the time and if you are getting symptoms all the time then, you know, you, you should go back and talk to your doctor because there’s probably something they can do. And just kind of, you know, be aware of your triggers but you can kind of still do stuff.

Sounds like you have to kind of really know yourself and also …

Yeah.

… be able or prepared to work…

You kind of have to…

.. Hand in hand with the doctor and the asthma nurse…

You have to be a bit kind of proactive and take a bit of control of it. But if you do you can just not have it interfering too much.
 

Peter says it’s important to work hand in hand with the GP to find the right treatment; ‘be prepared to experiment a bit’.

Peter says it’s important to work hand in hand with the GP to find the right treatment; ‘be prepared to experiment a bit’.

Age at interview: 62
Sex: Male
Age at diagnosis: 45
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I think if you’ve just been diagnosed you’ve got quite a lot to learn. I mean because its severity varies so much. I mean a lot of people are successfully treated with occasional use of a reliever inhaler. There are lots of very successful sporting people that what’s her name Paula Radcliffe, and I think even Mr Beckham and various other, you know, very successful sports people have asthma, but it must be all right, must be mild, must be well controlled by medication, which is great. And if that’s how it affects you and that’s all you need to do, well you know, that’s fine.

But if it goes on to be… to become more severe then there’s actually quite a lot to learn. I don’t think anybody has a monopoly of wisdom for any given patient as to what they should do. So you’ve got to be prepared to experiment a bit. I think if your GP can’t tell you, and I’ve always felt fortunate that my GP would say, “Well, you know, I’m not sure what the best thing to do is, these are the options. You know, what’s your feelings?” And we’d alight on something or other and see if it was successful and if it wasn’t you know, try something else. And I always thought that was good. But I mean taking into, to get your own views taken into account. So question what you’re told and be prepared to try out different things.

I think learning to self manage is useful. I think that is useful. But that might take a bit of time to get to the point where you feel confident enough to do it. 
People told us what they felt was important to enable somebody who was newly diagnosed, or had badly controlled asthma, to get to the stage where they could feel in control of things including:
 
  • work with the GP and asthma nurse or other health professionals to find the right medication for you
  • learn how to manage it yourself
  • be proactive and ask questions if you don’t understand
  • learn how to use inhalers correctly
  • try to find out what your triggers are so that you can try to avoid them
  • ask for help if symptoms change or get worse
  • go for regular reviews at the asthma clinic
  • always take the medication
  • be organised
  • make sure friends and family know how to help if you have an asthma attack
  • try to keep calm if you are having difficulties breathing
  • and make a few lifestyle changes (e.g. stopping smoking or losing some weight) if necessary to give you a better chance of controlling your asthma.

 

Belinda suggests carrying an asthma attack card on you to give people around you information on how to help in an emergency, and put an ICE (In Case of Emergency) number on your mobile phone. [AUDIO ONLY]

Belinda suggests carrying an asthma attack card on you to give people around you information on how to help in an emergency, and put an ICE (In Case of Emergency) number on your mobile phone. [AUDIO ONLY]

Age at interview: 53
Sex: Female
Age at diagnosis: 1
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Two things. For medical health professionals and for other asthmatics, and anyone who suffers from a long term complaint, always carry an asthma card which you can get from the Asthma UK charity. And health professionals, look for that asthma card, and on the back it should have your name, address, your triggers and what helps you.

And also carry an ICE, in case of emergency number on your mobile ‘phone in case you’ve collapsed.

What’s an ICE?

In case of emergency.

OK. Hmhm.

ICE. Put it on your mobile ‘phone’.
 

Jenny has severe brittle asthma and is often in and out of hospital. She recalls the first time she went in to A&E as an emergency, but now the hospital staff and paramedics know her and what she needs.

Jenny has severe brittle asthma and is often in and out of hospital. She recalls the first time she went in to A&E as an emergency, but now the hospital staff and paramedics know her and what she needs.

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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Going into hospital for the first time. We went to A&E because I’d been gradually getting worse… I have to, I have to remember the, the, you know, the sequence of events, I think mum had rung the GP who had sort of questioned her and said, you know, “Have you done this? Have you done that?” And, yes, basically it’s a case of well, “You’d better go to A&E”. So they took me to A&E, as I say, and I managed to pass out at the reception desk because my oxygen levels were so low, and I was just so tired because I had been fighting this for, fighting it for days, not realising how bad I was getting.

And had you been on steroids, at that point, or were you just using your inhalers?

I think at that point, I was just using my inhalers… because I hadn’t realised that I’d got an infection or anything because previously I’d had the infection in my foot, I’d had antibiotics for that.. and was just assumed that I was better and thought the cough was because it was the middle of summer, you know, was it hay fever or whatever… I was having a bit of a cough and stuff. And then, when I say I got to A&E, they just thought that my temperature was very high and I had this infection and they did the x-ray and it was, it was pneumonia in the left lung, and I was in the hospital for ten days with that.

And what took place whilst you were admitted into hospital and what, what sort of things were they doing?

In A&E I had nebulisers, oxygen, fluids because I’d got de-hydrated because I was coughing so much.

What the, do you know what the nebulisers called?

Salbutamol… and Atrovent nebulisers yeah.

So that’s to kind of stabilise you, and so when you were in hospital they were monitoring you and keeping, trying to get on to…

Yeah. The idea is, before you go home from hospital, you have to be back on your normal medication, unless they happen to have increased it or whatever. I mean, it turned out I then went on to a drug called aminophylline which they put straight into your veins and that sort of increases the blood supply to your lungs and it relaxes things down.

Now I have, since being here, I’ve… on my first admission it was all set up for me that now my home phone number and my mobile phone number are red flagged, what they call it with the ambulance service, so if I ring them up, it’s, they know who I am, they the chances are that it’s probably my asthma; if I can’t say much I don’t need to say much to them. They’ll sort of say, you know, they’ll ask you for your phone number, where you are or the location and then often they’ll say “Is that Jenny?” “Yes”. “Is it your asthma?” “Yes”. “Someone’s on their way,” and they sort of say, they give you the usual do this do that, whatever.

So it’s sort pre-set for a priority call?

Yeah.
 

Melissa’s message is ‘always ask if you don’t know’. It’s important to make sure you understand the medication and how to use it.

Melissa’s message is ‘always ask if you don’t know’. It’s important to make sure you understand the medication and how to use it.

Age at interview: 37
Sex: Female
Age at diagnosis: 16
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My message to somebody who’d just been diagnosed would be always ask if you don’t know. I never did I was so scared, so frightened and I felt so alone and blamed myself. And nowadays with the support that there is out there, there isn’t any reason to really feel like that I don’t think now. Because the doctors and the nurses they will never not answer your questions. They will always make sure if you need to know something that you know it. And if you’re not sure on taking your inhalers always say to them, I’m really not sure, could we just go through that again please. Because yet again I didn’t and I, I do feel that at the beginning for me that was part of my problem that I just didn’t know.

Didn’t have the right technique?

Didn’t have the right technique. It wasn’t, I didn’t know if I was doing it right. So yes, always make sure you’ve got enough information to be able to feel satisfied and happy before you walk away.
 

Dee’s advice is’ you can make a really big difference to your experience of this yourself…..working hand in glove with people who know a lot more about it than you do at the asthma clinic’.

Dee’s advice is’ you can make a really big difference to your experience of this yourself…..working hand in glove with people who know a lot more about it than you do at the asthma clinic’.

Age at interview: 52
Sex: Female
Age at diagnosis: 23
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And, I suppose the message that I’d be giving to anybody who gets diagnosis of asthma is, within limits, you can make a really big difference to your experience of this yourself. Yeah, working hand in glove with people who know a lot more about it than you do at the asthma clinic.

I mean I know from talking to asthma nurses, specialist asthma nurse and asthma professionals that they could spend all day and every day teaching people how to actually take the drugs properly. A lot of people have the medication and they think they’re taking it but they’re swallowing it or losing it into the air or whatever but they’re not actually getting it into the lungs.

Just be organised about where your medication is and about taking it and you know, don’t suffer in silence. You know, if you feel that you’re breathless or you feel it’s stopping you doing things, get out there and find yourself a an asthma clinic near you and go along and make friends with them and listen to what they say because it might all sound a wee bit kind of precious and picky at the start but they know what they’re talking about. And use whatever resources you can get at on the internet or reading or talking to other people but I think just if you can have an attitude that your asthma is there, you can either manage it or not manage it and managing it to within whatever level is obviously, going to be better for your quality of life.
 

For Margaret the most important thing is to ensure that you are taking the medication correctly and regularly. ‘It’s just part of the morning and night routine, before you clean your teeth, you take your inhaler’.

For Margaret the most important thing is to ensure that you are taking the medication correctly and regularly. ‘It’s just part of the morning and night routine, before you clean your teeth, you take your inhaler’.

Age at interview: 62
Sex: Female
Age at diagnosis: 47
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It’s a routine I follow. I don’t risk my treatment, you know, I don’t miss taking my inhaler morning and night. That’s just so important, it’s just part of the morning and night routine, before you clean your teeth, you take your inhaler, breathe in, wait for ten seconds breathe out, if you need another dose you take it. And that’s been, you know, sort of, and I know it’s worked for me. So I just hope that anybody who is watching this and is worried, it’s worth just beating it. It’s a long term, at the moment a long term and what they call a chronic condition which I hate, I hate the terminology, but it doesn’t mean to say that it must rule your life.
While people often mentioned taking a positive attitude, several also pointed out that this did not mean treating as asthma as trivial. Being aware of how serious it can be if not well controlled can help motivate people to make sure they manage their asthma effectively.
(Also see ‘Managing asthma – reviews and action plans’ and ‘Medication and treatment-inhalers’).

Last reviewed August 2017.
 
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