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Asthma

Messages to health professionals

We asked the people we interviewed what messages they would like to convey to health professionals who look after people with asthma. Developing good relationships with your GP, asthma nurse or consultant was seen as helpful in enabling people to manage their asthma successfully, and to get help when needed. In order for this to happen, one of the most common messages was that health professionals should really listen to patients, give them plenty of information and time to ask questions, and treat each person as an individual, especially since asthma can vary so much from person to person.

 

Jenny emphasises the importance of being treated as an individual because ‘all asthmatics are different’.

Jenny emphasises the importance of being treated as an individual because ‘all asthmatics are different’.

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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Number one, all asthmatics are different, don’t label …stick us all in the same box, you know. Don’t, don’t, don’t assume that we’ll all have the same attitude to things, and that you can treat us all the same way. And it’s like, oh, it’s great when acknowledge that you have the condition and you’ve lived with it and you know what you’re doing. I mean, now, I’ve got A&E well trained now. When I go in there they say, “What do you want, what do you need?” Because they know that I know that I’ve lived with this for a long time so I will say to them well, “Can you listen to this? Am I wheezy? Am I this, am I that? And they’ll, and they’ll say, yes, whatever, and they’ll treat me.

So you’re seen as the expert on your condition, in a sense?

Yes. I mean, lots of people, a lot of medical professionals will say that. “Oh, it’s your condition, you’re the expert”, you know, and then they completely ignore you.

And then I think, well, hang on, you just told me that I’m the expert and that I lived with it, and I am. I mean, the classic thing, my brother, he’s a junior doctor at the minute, and he acknowledges that he knows nothing about that or that he knows very little. I know a lot more about asthma than he does, and - accept the knowledge, use it. I mean, sometimes you get junior doctors who will just blank you. You’ve asked them something and they’ll just blank you, and you’re just like well, what’s the point? You know, I know, I know what’s, what’s happening, I know my body, I know how I feel, and I know what will help, you know.

So you feel that to say to them to listen to you…

Yeah.

And take your help?

I mean, I have to say it gets worse the more senior they get. When you go into hospital down here, you go in under whichever medical consultant happens to be on, and that consultant sees you the next day and then hands you over to, so they’ll hand me back to my, my consultant. But some of the consultants, they want to do this, that and the other. Oh, well, we’ll do this then, and I was like, do you know, just hand me back to …… to my respiratory consultant, and they are like, “Oh, well I think we should try it this way”. And occasionally you have to stop, I mean there’s one doctor and I who, we, she just looks at me and goes, “Oh; it’s you”, and then just walks off now. She won’t, because I refused to let her do something she wanted to do.

It can be quite difficult to assert yourself when you’re feeling low and ill and vulnerable, can’t it, I imagine?

Yeah, yeah, it can be, and I’m, when I’m well, I go from one extreme to the other. I either go to, I’m either the completely helpless, just do it to me, I don’t care, or the, I want this, I want that, I want, you know, you don’t touch that, you’re not, you know. And so that, I mean, again, that makes it difficult sometimes, you know, to, to be, yeah, you, you have to assertive but assertive in a positive way.

I mean, the other thing is if something goes wrong, you know, if a complaint needs to be made or something, I’m not afraid to make the complaint because I don’t want it to happen either again to me or to somebody else. I mean, a classic example, I was left in A&E once, they were busy, and I was put in the wrong cubicle and basically ignored and by the time they had got round to me I ended up in the high dependency unit for three days because they’d left me. And I sort of, I’d said something to one of the nurses, “Oh, I’ll get so and so and so…”, and I ended up having to put in a complaint and get it sorted, and now, you know, they have a different asthma management, so if somebody comes in with asthma, they are only put into a certain area … and they are monitored, it’s much better.
 

Melissa says if the doctor gives you time and reassurance it’s more likely that you will feel able to ask for help and information if you need it. People may need to ask the same question several times to feel sure.

Melissa says if the doctor gives you time and reassurance it’s more likely that you will feel able to ask for help and information if you need it. People may need to ask the same question several times to feel sure.

Age at interview: 37
Sex: Female
Age at diagnosis: 16
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I think I would just say, just please make sure you give them that extra time to make sure they are a hundred per cent on knowing everything they need to know. And if they do go away and come back, just give them the same…

Patience.

Patience and understanding as you would have the first time they were diagnosed, because sometimes you can go, okay this is fine, and you can go away and then you can suddenly go, actually I’m really not sure on this. And you go back and then because you’re asking the same questions you’ve asked before you feel that they’re, you’re being judged. So yes, just always bear that in mind really that we’re asking the same question again because we need to know and we’re not sure. It’s not because we’re stupid and we’ve forgotten or any other reason. A lot of the time it’s because we’re just not sure.

Just need a little reminding?

And we just need that bit more of reassurance to back up what you told us before. And I think that’s the key to a lot of things is that if the health profession is more understanding and more helpful and there for you more you’re more willing to go back and ask questions. Whereas if you don’t feel comfortable and you don’t feel you’re getting the support, you’re not going to go back, you’re not going to ask questions.
 

Jane thinks it’s important that doctors listen and understand how asthma is affecting your life ‘talk to us about how it’s affecting us in the round’.

Jane thinks it’s important that doctors listen and understand how asthma is affecting your life ‘talk to us about how it’s affecting us in the round’.

Age at interview: 59
Sex: Female
Age at diagnosis: 54
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I would say that it’s really important to listen to your patients. Because they are the experts in how they’re feeling. And to see asthma as more than something that affects our airways. It actually affects us as, as people, it affects our lives. There’s a huge adjustment that you have to make when you’re first diagnosed. I went from seeing myself as a healthy person with no, no health worries and problems at all to somebody who might have an asthma attack tomorrow that they don’t survive.Or even this afternoon.And that’s a huge adjustment that you have to make.

There’s a lot written in the psychological literature about the embodiment of self and so on so I would, I would ask health professionals to talk to us about how it’s affecting us in the round ... not just how it’s affecting our breathing.
Belinda says it is important to feel that your doctor or asthma nurse is working with you rather than telling you what to do. ‘It’s not you and them, we are together as a team’. For Jan, the most important thing is to feel that you are being heard and taken seriously… "our experience counts, to me it should be about partnership, I mean yes, we haven’t got the technical knowledge but I’ve got 43 years’ experience of living with asthma."

Jane recommended that doctors think about how asthma is affecting people ‘in the round, not just how it’s affecting our breathing’, and others agreed that seeing the whole person was helpful.

Faisil would like doctors to be mindful of the impact that having asthma could have on people’s wider life and wonders if they are sometimes too focused on prescribing inhalers and medication and not on providing wider support and information.

Andreane suggested more attention to the whole person might actually give the doctor useful clinical information about possible triggers or lifestyle factors affecting the person’s asthma.
 

Andreane feels it’s important for doctors to get a full picture of a person’s life ‘take the time to listen and give them the time to open up, and establish a rapport, it helps…’.

Andreane feels it’s important for doctors to get a full picture of a person’s life ‘take the time to listen and give them the time to open up, and establish a rapport, it helps…’.

Age at interview: 48
Sex: Female
Age at diagnosis: 33
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I think it’s, they have a lot of training, a lot of training, which is fantastic. But they haven’t been given the practical side of how to deal with a person, individual to respect them. And sometimes to encourage them to open up, because in encouraging an individual to open up they can actually share with them and give them much more of a greater, a wholer picture of what their lifestyle is, and therefore there might be other factors involved that they don’t know about. That could have a great impact on their illness, and yet, if the health care professional is just short sharp, right this is what you’ve got, this is what you’re going to have, bye, bye thank you very much. What’s the point? You know, you need the fuller picture of the person, because it could be something else in their life that they are doing or not doing that could have a knock on effect and an impact to, on their illness, but if you take the time to listen and give them the time to open up and respect, you know, establish a rapport it helps.
Peter has been doing volunteer work for Asthma UK so has had the opportunity to talk to quite a lot of people with asthma. He says he there seems to be a wide variation in the way that health professionals think about asthma and the way that they deal with patients.
 

Peter says it’s important for health professionals to have a good understanding of asthma, and to take it seriously.

Peter says it’s important for health professionals to have a good understanding of asthma, and to take it seriously.

Age at interview: 62
Sex: Male
Age at diagnosis: 45
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It sounds like you’ve had quite a good experience?

Yes. I think overall I have. Many people I’ve met don’t. The, post code lottery does seem to exist. I wasn’t sure I quite believed it but I do now. I think there are more generic things that I want to say are not necessarily applying to asthma, but my impression is that not everybody listens terribly well. I always felt I was very lucky in having a genuine consultation. It’s the kind of desk side manner of the person you’re talking to. But I always felt that was positive to be having a genuine consultation rather than being told to take these and go away. And that doesn’t seem to happen necessarily all that widely.

I think even, this is my impression, although it’s not my direct experience that, that probably quite a lot of health care professionals don’t actually take the condition as seriously as it should be taken partly because the majority of people- all they need is reliever inhaler and they’re fine for a long, long time. In a way that’s difficult to believe because they ought to know that it can be serious and you’d have thought if they were seeing a couple of thousand people over the course of a year or whatever it is then, some of those people have fairly severe asthma but …

Do you think that reflects, I mean generally in society do you think not enough is known about asthma?

No. I don’t think people do know that a) its widespread and b) it can be a serious condition. Again this is not my experience because I haven’t had it, but talking to other people who’ve you know, been admitted to A & E you know, it would appear that people in A & E don’t necessarily know too much about asthma and might be very good at fixing other sort of emergency situations, but the aftercare from severe asthma attack also seems to be very, very inconsistent. You know, from nothing to quite a process.
Julie feels that if a parent goes to see the doctor with a wheezy child they should be listened to and taken seriously because asthma can be life threatening if not recognised and treated. "Be aware that asthma kills, to put it very succinctly. Not fob it off."

People thought a balance needs to be struck since for most people asthma can be well controlled and will not be life-threatening. Stephen remembered his GP giving lots of reassurance when he was newly diagnosed as a young adult that "this is no big deal. We can cope with it. There might not be a cure but there’s plenty of other ways of dealing with it very positively." Saying ‘we can cope’ rather than ‘you can cope’ is perhaps a good example of working as a team together.

People who had been diagnosed as children or in their teens, also had important messages for health professionals. Nicola’s key message was to make sure that young people know where to go for help, information and support, even if the GP doesn’t have much time.

Tomas emphasised how important it was for doctors and nurses working with young people to explain things in ways that could be easily understood, to ‘talk on the same level’. He thought bringing home to young people the reality of the condition might encourage to take their medication regularly - "showing them how bad it can be, but not so scary that they’re going to be really worried about it." But David, like Stephen, preferred a more reassuring approach.
 

David says younger people may have lots of questions about asthma and need to be given lots of reassurance and information.

David says younger people may have lots of questions about asthma and need to be given lots of reassurance and information.

Age at interview: 18
Sex: Male
Age at diagnosis: 5
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How to treat the asthma really and what affects asthma. I think doctors and nurses should be able to convey these ideas to the patient, help to reassure them. I think they need to know basically a good deal about asthma so they can definitely reassure the patient. And say there’s a young child and it may have loads of questions they might want to ask I mean it’s good. Obviously if the doctor and nurse can answer all these questions so probably a good deal of knowledge is probably recommended. Yeah.

Anything else?

Well obviously it would be good if they knew how to, how to use certain equipment, inhalers and peak flow meters for example. So they can make sure the patient is using them correctly and they also advise and teach them how to use it.

Any issues about when they communicate with young people?

Yeah just be friendly, be friendly, reassure them because the kid’s obviously going to be like, have loads of questions about the asthma and going to be really panicking if the doctor and nurse can’t answer their questions ‘cause they’ll feel that people don’t really understand and maybe that’s. Maybe they’ll feel more reassured if people do understand what’s going on. So they feel reassured that people can help them. So basically it’s just be polite, be friendly to the patient or the child or adult with asthma. Just reassure them really I think. Help to keep them calm.
Margaret was concerned that sometimes health professionals rely too heavily on standard measurements such as the peak flow reading that is used to assess people’s lung function, because they don’t always take individual variations into account. She feels it’s important that people should also be encouraged to be aware of their own capabilities and limitations and to know their own body. Her message to health professionals was "You do the theory and I do the practical and we have lessons to be shared and learnt from each other". Alice also felt it was very important for health professionals to encourage people to get to know and understand their own asthma patterns, and to give them the right tools to help them self-manage their condition.
 

Alice says it’s good for people to learn how to self manage their asthma, and it’s good for health professionals because in the long run the patient will need fewer appointments and less time with the doctor. [AUDIO ONLY]

Alice says it’s good for people to learn how to self manage their asthma, and it’s good for health professionals because in the long run the patient will need fewer appointments and less time with the doctor. [AUDIO ONLY]

Age at interview: 59
Sex: Female
Age at diagnosis: 18
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I think, definitely encourage people to do self-management and to give them the tools to do it, you know, give them, I don't know, spacers and nebulisers, do encourage them to have the regular checks, you know, because...

...to sort of, you know, keep their asthma under control and obviously they can't learn, you know, a tremendous amount detail about every single illness but if they can have at least have an, have an awareness, and I definitely would encourage most medical professionals to hand over the management to the, to the people with asthma, frees them up for other things and it’s good for the people with asthma. 
(Also see ‘Dealing with health professionals’ and ‘Managing asthma – reviews and action plans’).

Last reviewed August 2017.

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