A-Z

Asthma

Finding information about asthma

Being diagnosed with asthma means different things to different people and their need for information will vary depending on how long they have had the condition and what kind of symptoms they have. Those for whom asthma had been a part of their lives for many years or where the symptoms were mild or infrequent, often said that they felt they knew enough about asthma and how to manage and control it.

People who are diagnosed as children or young adolescents tend to have information filtered through their parents until they are old enough. Tomas felt he understood enough about asthma when he was growing up and had never needed to search for more. ‘Explaining to me was through the doctor but with my parents there. So obviously they would explain it to them and then my parents would explain it to me in an easier way for me to understand. So... I pretty much understood it from the start.’

On the other hand, looking back, Philip says he thinks he wasn’t given enough information as a young person with asthma and has since used the internet and found out a lot more information for himself.

 

Philip doesn’t think he knew too much about asthma when he was a teenager, and wonders if this was because the staff talked to his mum, or perhaps he didn’t pay much attention.

Philip doesn’t think he knew too much about asthma when he was a teenager, and wonders if this was because the staff talked to his mum, or perhaps he didn’t pay much attention.

Age at interview: 32
Sex: Male
Age at diagnosis: 6
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I think there definitely was that lack of communication between me and the GP, me and my mum or I wasn’t paying attention or whatever, but I definitely wasn’t informed about this stuff. It was like, you see when I found out there, you know, I found out a few years ago I’ve some gastro problem they say I’ve maybe, either a hiatus hernia or I just produce too much acid so I started taking a wee tablet to stop that and life’s been much better since I started taking the tablet. But it’s called G.E.R.D. something, gastro something. Eighty per cent of people who have that, have asthma.

Oh, right.

Stuff like that there. If you read about it, apparently it’s quite a lot of people have the same sort link. I don’t know if it’s linked. It’s seems to be a wee correlation. They say eighty per cent of people have that and asthma. Like that’s something I had to find out myself with that. The doctors never said that to me.

It’s kind of like. There’s a lack, there was a lack of communication.

And maybe it was to do with I was a kid and they talked to my mum or I just didn’t pay attention because I was a teenager, which isn’t the best thing on earth.

But that’s what they do.
Lisa also said that she wondered whether doctors and nurses sometimes didn’t tell you too much about it to avoid scaring you, as it wasn’t until she was older and did some research for herself that she found out how severe asthma can get. "People can die from it and I don’t think I realised until I got a bit older". There were mixed views among people with both childhood and adult onset about how to get the balance right between reassuring people that you can live a normal life with asthma but at the same time bringing home to them the risk of a serious attack if they do not keep it well controlled.
 

Andreane thinks people need to understand how serious asthma can be so that they can manage it properly. Doctors need to explain things, but without making it sound too scary.

Andreane thinks people need to understand how serious asthma can be so that they can manage it properly. Doctors need to explain things, but without making it sound too scary.

Age at interview: 48
Sex: Female
Age at diagnosis: 33
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I think sometimes we’re too shy of advertising the negative side of things.

Okay.

Because we don’t want to upset people. And therefore we are too willing to mollycoddle to put people into cotton wool areas, and much as I don’t want to upset anyone and to scare them, I don’t want to not shy away from the seriousness of it, because until you understand and appreciate the seriousness will you take it seriously, and actually respect it? And that’s my worry, that’s my concern. No I don’t want to be a fear monger and put the fear, not unnecessarily but you have to have a happy medium of healthy respect of the illness you have. How to deal with it and what you need to do and to take it seriously. Because ultimately in this case it can be fatal.

And were you made aware of that when you were diagnosed with…?

No. No. It was, oh you’ve got asthma, every day thing, nothing to worry about, just another …., just another illness and nothing to worry about. Yes. Not fully appreciating how serious it could have been. I’m just very grateful in that time I didn’t time fully take my medications so seriously that I didn’t have what could have been cast as a serious attack, so much so I could have died from, I’m just very lucky that I didn’t.
Several people who had been diagnosed with adult onset asthma said that they had not known much about it before their own diagnosis and some said that they made it their business to find out more about it so that they could learn how best to manage the condition. Jenny said, ‘Knowledge is control,’ and Alice (below) said that if you can find out as much as you can, it will stop you from feeling frightened.

Time constraints in consultations with doctors, and the very different types of information that people might need, motivated many people to look for information themselves. People said they wanted to find out general information about what the condition is, what the symptoms are like, what the triggers are, and about the drugs and treatments for asthma, in particular how to use inhalers correctly. Asthma nurses were particularly valued for their expertise and the time they took to demonstrate inhaler techniques. Nicola’s asthma nurse had an airways model which helped Nicola to understand about her asthma and why inhalers work.
 

Alice wanted to find out as much as she could about asthma after she was diagnosed. Asthma UK leaflets were a helpful source of information; she now uses the internet. [AUDIO ONLY]

Alice wanted to find out as much as she could about asthma after she was diagnosed. Asthma UK leaflets were a helpful source of information; she now uses the internet. [AUDIO ONLY]

Age at interview: 59
Sex: Female
Age at diagnosis: 18
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To suddenly find that you’re, you know, at the mercy of something you feel which is inhabiting your body, was very, was very difficult, and it, yes it did, and I didn't at the time have any friends with asthma. So I, you know, I was kind of alone in that and because it sort of developed when I was an adult there, there wasn't really anybody else to deal with it other than myself.

And what kind of sources of information would you have been able to access at that time, would you say?

There were already stuff from, from Asthma UK, so I think I became aware of them quite early on, but that was before the Internet. And they used to send, you know, pamphlets, there must have been a number to phone up and then we had information sheets, and definitely whatever there was available, was kind of flagged up in the first hospital I went to you know, of, of, and I think you know it wasn't called Asthma UK then, it would have been the National Asthma Campaign and Asthma Research Council. So I, you know, got that information as early as I could.

I mean, did it help to have some kind of understanding of what happens during asthma attacks, was that the way?

It felt absolutely crucial, I think, and that is very, very good and although it’s easier to access that information on the Internet, it was there. And I think that, because if you can understand something, it’s not so frightening. 
 

Dee spoke to friends and family, her GP and asthma nurse to find out more about asthma and help her learn to manage her condition. [AUDIO ONLY]

Dee spoke to friends and family, her GP and asthma nurse to find out more about asthma and help her learn to manage her condition. [AUDIO ONLY]

Age at interview: 52
Sex: Female
Age at diagnosis: 23
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If somebody has a member of the family or a child or they’ve a friend or they’ve encountered it, they tend to sort of understand it and know what’s going on within limits. But they anybody who’s never encountered it in one form or another, I think it’s just a, they don’t, you know, they don’t really understand.

So I’d say the general, accurate information is, the level of accurate information, actually probably quite low in the general public, I would think.

Okay. And what about when you were diagnosed, what sort of sources of information did you tap to find out more about asthma or did you look for anything?

I would have read about it. I would have spoken with friends and family, who were, you know, medically qualified.

I would of I would I remember at the time doing a little bit of research about what the medication was because the word steroid kind of didn’t sit very well with me and I was wondering will I be taking this long term, what does it mean?

And doing bits of research about what it really meant. And I would really have loved to have had somebody telling me what triggered the adult onset asthma in me but I don’t know. I have my theory that it was, you know, general other health problems, maybe quality of air. But that would have been it at the time and I suppose just I have I have a general interest in it, and if, you know, there’s anything in the press or there’s any bits of research that come across, you know, you’d always sort of ping into it and have a listen. But I think I think the big thing that I’ve learnt is that it’s less about maybe what the medication is and it’s more about the management and the behaviour of it.

Kind of taking a responsibility for it and getting to know yourself and your own responses really, really well and then having access to, you know, your asthma clinic or your practice, your GP’s practice or your practice nurse or whoever it is that, you know, you can get that support from and having somebody to just go and, you know, chatted over with and of your fears and concerns.

Yeah, the management of it I think is the thing that.

The key issue?

Is the key issues, yeah.

And the internet probably hadn’t taken off.

Not when I was diagnosed.

Yeah.

It’s so long ago.
 

Val used the internet to find out more about asthma when she was first diagnosed, and through that got involved as a volunteer for Asthma UK.

Val used the internet to find out more about asthma when she was first diagnosed, and through that got involved as a volunteer for Asthma UK.

Age at interview: 62
Sex: Female
Age at diagnosis: 57
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Initially I looked up everything I possibly could [laughs], you know, when I was first diagnosed I spent hours looking at you know, what, what caused it. There’s no cure for asthma, so it’s about controlling the symptoms, as much as possible. Then I saw an advert actually in the paper for Asthma UK wanting policy and research volunteers, so I kind of responded to that advert and I mean they’re great because you meet a lot of people who kind of have, you know, the same condition as you do. And it’s an opportunity to share things. You can get involved in DH things. You can get involved in Foundation Grant man… So it’s all adding to your knowledge about, you know, the condition. And what people are trying to do and what is kind of, what can be done and things like that.

I mean so was that a conscious decision to get involved in order to kind of meet up with other people and so on?

Yes. Yes. And to learn or, yes. Yes, it was a conscious decision.

So I mean do you think there, does it help to talk to other people about those experiences?

Yeah, I mean most, the stuff is done online in all fairness, so you might, I mean you’re only meeting people if it’s something specific, but there are online forums so you can you know, join in the online chats and forums, and discussions and things like that.

Have you done that?

Yes, I do that, I do that occasionally. I kind of, I worry a little bit about too much knowledge being a bad thing. Do you know what I mean? So I kind of have to think, well I probably went for several years with this thinking it was my health when, thinking it was my age, when in fact it wasn’t and I perhaps should have got something done earlier about it. So I do, I think there’s a kind of tension and a conflict between you know, self control and seeking advice from professionals and what have you. But I do get most of my knowledge I have to say online.

What benefits might there be to sharing experiences on the internet? I mean either about asthma or more generally would you think?

Well I think there are, 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 top. 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.
Some, like Faisil who has had asthma since childhood were interested to find out whether there were new treatments or alternative medications coming out, and about the latest research. Others who had had the condition a long time mentioned needing occasional reminders about things, or being prompted to look again for information when their symptoms changed.

Not everyone wanted to find out lots of information about asthma. This might be because people already felt they knew enough, or because they didn’t want to find out things that might scare them or make them feel anxious, or hear about other experiences that were different from their own.
 

Melissa is wary about finding information on the internet and says she only looks things up on a ‘need to know basis.’

Melissa is wary about finding information on the internet and says she only looks things up on a ‘need to know basis.’

Age at interview: 37
Sex: Female
Age at diagnosis: 16
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Where have you got information from?

I mean I presume they still exist, but there was a group called Action for Asthma or Asthma Action. I can’t remember quite what they were called. I got a lot of information from them in the early days They sent me lots of leaflets and different types of things. So I got a lot of information from them really. And that’s, that’s the only place that I’ve had information from in my younger days.

In my older days I haven’t really seeked any information or anything from anyone. I’ve just, I’ve very much just gone on how I feel.

So no I haven’t really seeked advice on anything or any information should I say where my asthma’s concerned.

So have you ever looked it up on the internet, or anything?

No I don’t like to look illnesses up on the internet, only because I’ve had quite a bad experience from doing that, so ever since I’ve had the bad experience, I just went I’m not going to go there anymore, because you can be told all sorts of horror stories and they can, sometimes be one off horror stories, they don’t actually necessarily be the way it is across the board, but if you read enough of them, then you’re going to start thinking, oh no. That’s what’s going to happen to me.

So you just do it on a need to know basis then?

So I do it on a very much need to know basis, I won’t, I don’t just, yes, no, I don’t like looking anything up on the internet. Unless I’m given a specific website and a specific page, by somebody that I can one hundred per cent trust, I won’t. I don’t like to go on the internet as a rule.

And do you feel that the level of information that you have is enough for you? What you know about it, is as much as you need to, or are there things that you’d like to know about that you don’t know?

No I think for me, what I know, the level of what I know is enough for me. Because I can manage my own asthma and I manage my son’s and my daughter’s without any problems. So no, I feel that the information I got from the earlier days, even though it’s probably all changed by now, is enough to say, “Yes, I can deal with this. This is fine. This is, you know, this is manageable.”
 

Ann used a couple of websites to look up information when she first had asthma, but was trying to strike a balance between getting information, and trying to stop herself from feeling anxious. ‘I thought, right I think this is enough for the time being.’

Ann used a couple of websites to look up information when she first had asthma, but was trying to strike a balance between getting information, and trying to stop herself from feeling anxious. ‘I thought, right I think this is enough for the time being.’

Age at interview: 55
Sex: Female
Age at diagnosis: 53
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Did you go on the Internet straight away when you found you had asthma?

Yes. Yes I did.

And what did you look up?

I looked up, I looked up NHS Direct and I looked up some American websites. And I found that there wasn't, actually I found NHS Direct generally whatever I'm looking up on NHS Direct I find it pretty pathetic, to be honest.

What is it about it that doesn't appeal to you?

Oh. It's, I understand that it's there for everyone not just for me. But it doesn't give the depth of information that I personally am looking for and some of the American websites for patients are much more the sort of quality and depth of information that I'm looking for.

So what would you go on a search engine and type in asthma? Is that how you would look at it, or how would you go about it?

Yes, I would. I would but once I found Asthma UK, I found that, that I made a decision. I read what was available at that time, two years ago and I thought this is really helpful for me, this is what I need to know now. And I made a decision not to look from, well I looked at that website and as I say some of the American websites for patients and I thought, “Right I think this is enough for the time being.” And unless I have a, a particular question in my mind, I don't go looking for more.

And what is it about those websites that you favour, that appeals to you?

They, there is a problem that some of the language, so the vocabulary obviously is American, so that, that's something that's not so good. But they just seem to be more for someone who wants to ask more challenging questions and who’s not scared of reading research papers.

And do you read research papers, is that what you...

I did at the time.

You did. Yeah.

I did at the time but I couldn't find very much that I thought was relevant to me.

So you had to do quite a lot of selection of different aspects..

Yes, yes

..and things that spoke to you..

Yeah.

..that you could identify with.

Yes at that time. But ....actually I think that probably I didn't use the web that much.

Because you didn’t want to scare yourself too much?

Yes.

Yeah

Because I was still trying to strike that balance between trying to get on a, or improve my mental health, but work out what I could do to help myself physically. And emotionally.

So you were kind of managing the amount of information...

Yes.

...that you took in according to how you were feeling.

Yes that’s what I was trying to do.
Where to find information?

The internet is widely used to find factual medical information about the management and control of asthma, and also to find helpful tips and advice from other people about living with the condition, for example by using chat forums or e mail groups. Stephen has recently been diagnosed and wanted to find out more about the condition so that he could know what to expect.
 

Stephen saw it as a new challenge to find out about asthma when he was recently diagnosed. He has looked on the internet, at first for factual medical information, then for other people’s experiences.

Stephen saw it as a new challenge to find out about asthma when he was recently diagnosed. He has looked on the internet, at first for factual medical information, then for other people’s experiences.

Age at interview: 25
Sex: Male
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It was it was a new challenge, in that sense, go through it, move on with it. It actually did make me think though, to go and research, you know, to find out more about it. That’s what I wanted to know. I wanted to educate myself on the subject to an extent. So just for personal gain I suppose.

And how did you go about that?

Well, again, the doctor, the GP was very good. He printed off a number of texts that just give the basics, so I just sat and read through them, and I’ve actually just continued, you know, the odd afternoon, just maybe ten or fifteen minutes, quick search on the internet to see if there was anything.

I haven’t sat reading intensively about it. I’ll just go fifteen minutes just a wee nosey or things like that.

Yeah. Okay and what kind of websites do you look up when you do that?

I generally, just go through the search engine and just to find the search whatever, whatever key words, whatever jumps out, you know, like, “Oh, that could be interesting and.” Just.

Is it medical information or patients’ experiences?

It’s actually, a mixture of both. At the start, it was medical information. I wanted to know why, you know, what actually, what’s going on to make my breathing change all of a sudden.

And then I was on some, one or two experiences, just trying to find, you know, just as a bit of reassurance just, you know, that you know things will continue on a good line.
People used a combination of favourite websites that they used regularly when they wanted to find information (notably Asthma UK), as well as more general search engine like Google (See also below for how people assess the reliability of information they find).

Although many people find the internet useful, Tomas suggested young people may prefer to get information through videos and games rather than written information, and Lisa found a DVD helpful.
 

Lisa was diagnosed aged 12. The asthma nurse gave her a DVD which helped because she could see other children talking about having asthma. It helped her to get used to the idea.

Lisa was diagnosed aged 12. The asthma nurse gave her a DVD which helped because she could see other children talking about having asthma. It helped her to get used to the idea.

Age at interview: 23
Sex: Female
Age at diagnosis: 11
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Yeah, I was in my last year of primary school, and I just remember really being out of breath quite a lot at PE and my mum brought me to the doctor, and they tested me or, you know, checked me, my peak flow, and then was just diagnosed then. So it was around, I suppose, September 1998 before I started secondary school, just.

So you were about eleven.

Yeah.

And how did you feel when you were told?

I wasn’t really too sure what asthma was. I just knew I couldn’t breathe properly [laughs]. That was really it until it was just when I got older, and went in the secondary school and more people had it, and I realised, you know, that it was actually quite dangerous but I think then I panicked a bit more but, you know, when I was first diagnosed it didn’t really didn’t really annoy me [laughs].

Okay and were you told at the time what it was?

Yeah, the nurse one of the nurses, you know, explained what it was, but when you’re when you’re young, you know, it was in one ear and out the other, but yeah, she said, the nurse like explained it in quite a lot of detail.

And gave me pictures and a wee DVD or video of what it was, and different children with asthma and...

So was it sort of children talking about asthma and telling you what it was like?

Yeah.

Right.

And it was, you know, it was just showing the different activities where your asthma could affect you. It was showing…

Okay.

Say children playing football or like skipping, stuff like that.

Sort of physical exercise and…

Yeah.

...activities. Yeah. And was it good to have other children telling you about what it was like?

Yeah, ‘cause, you know, if they’re if they’re a similar age, it’s easier for you to understand than, you know, a nurse telling you but, yeah, it was it was a lot easier for me to like understand and to say, “Oh, well, that’s exactly what it is.” Instead of just saying, you know, what I’ve been told, actually understanding was, so easier for me.

And so did the children on the video talk about it then?

Yeah, talked they just talked about how often their asthma affects them and if it, you know, other family members had it, just stuff like that.

Yeah. Okay, and so at that time, what, yeah, what kind of things did the nurse tell about what asthma was?

She just said that it was a condition to do with your breathing and she just really said that sometimes if I feel a bit tight in my chest, that’s when I should be taking an inhaler and explained why I was taking my inhaler, you know, and just that was really it.
Before the internet the main sources of information were books, pamphlets and leaflets, either provided by health professionals or support organisations. Some people still preferred written information from their GP or Asthma UK to searching online. Charles said he read leaflets from the GP surgery when he was first diagnosed and found they were all he needed, because his asthma is fairly mild, and he tends not to use the internet a great deal for this kind of thing. But other people said that since the internet has become widely accessible that they use it to look things up either regularly, or when needed.

As the main support organisation for asthma sufferers Asthma UK is a popular and well-regarded source of information and support. Most people said they felt the website was very informative and accessible, and they also liked the fact that you can phone up the helpline and speak to an asthma nurse if you want to talk about your symptoms or find out information. Ann (below) said that she discovered information about the links between hormones and asthma through using the Asthma UK website. The health professionals she had seen hadn’t been particularly aware of this as a trigger for asthma. Several people had become more closely involved with Asthma UK in a voluntary capacity giving talks to groups to educate people about asthma.
 

Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.

Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.

Age at interview: 55
Sex: Female
Age at diagnosis: 53
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What I now, what I now believe again, and if it hadn't been for the Asthma UK website I wouldn't have understood this. But at the time that I became very ill I was going through the menopause. And I had a very long, period running up to the menopause when I had perimenopausal symptoms. But nowhere had I ever come across information about how some women going through the menopause – when their hormonal levels really drop away, which is what I think happened to me, it, they lose their protection in a sense, hormones protect against inflammatory illness. And I think that's the most likely explanation of why I had the onset of severe asthma when I did. And yet when I speak to the health professionals who I've seen, many of them are totally unaware of this as an explanatory factor and I think I'm not sure to what extent they accept it. That's, that’s the health professionals that I've come across.

But it certainly explains my personal experience.
People with very severe or unusual forms of asthma are a small group who may have rather different information needs. They may develop a level of expertise beyond that of many health professionals. Jenny, for example, said her asthma nurse is ‘frightened of me’ because of her level of knowledge, but Jenny felt that was understandable given the complexity of her condition. Ann felt the asthma nurse in her practice was not very expert and said she would rather see a consultant.

Hospital specialists might also learn from listening to their patients, some of whom have become quite expert at finding and assessing scientific evidence. Catherine, for example, said she might take to her consultant articles about trials from the medical journal The Lancet, and others mentioned reading articles about asthma in the British Medical Journal and New Scientist. Faisil suggested that Asthma UK was most useful soon after diagnosis because it ‘just gives you the basics. It’s almost a beginners’ guide rather than for someone who’s maybe suffered with it for a long time.’  

How do people assess the reliability of information?

People we talked to told us about how they decided what information was relevant to them. Many pointed out that it was important to try to find reliable and trustworthy websites, run by voluntary organisations or the NHS, that specialised in health information  Asthma UK, British Lung Foundation, NHS Choices and  NHS Direct were all often mentioned Several people said it was important to know whether websites were driven by commercial interests such as drug companies. Information from the United States or other countries was sometimes not seen as relevant in the UK.
 

Catherine uses the internet for information but says you need to be cautious and ‘cherry pick’ what you find.

Catherine uses the internet for information but says you need to be cautious and ‘cherry pick’ what you find.

Age at interview: 39
Sex: Female
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Presumably years ago it was more difficult to get information.

Yeah, there wasn’t information [laughs]...

No?

... at all, unless you joined a national organisation then really there was no other source of information. When, for my parents when I was a child as far as I’m aware the only society they were able to join was the Eczema Society and, yes, through that they met other parents of children who had eczema but also had asthma... so they were able to share experiences and do fund-raisers and awareness events. But that was really all they had.

Whereas now, if you’re fortunate enough, even if you don’t have a computer at home, quite often there are computers in libraries and cafes and things. If you can find out about other groups, other societies, local support groups, national organisations it’s so much more helpful.

And so how would you go about finding out on the Internet, talk me through what you would do.

I would open up your search engine and first off put in as many words as I want, because if you fit the word asthma in the Internet you’re going to have... five billion pages come up and you don’t want that. So sometimes I’m putting in asthma and aspergillus. Or asthma and allergies. Because I want to find specific sites that deal with that combination. But you have to be select about it.

And how do you go about being selective?

I start looking at, if they are in a national, if they are a government organisation to start off. So at the end of the web address is it dot gov, uk or is it dot ac for a university. Because the odds are if it’s from a university it’s an awful lot more reliable and...

So you’re looking for trust and reliability ...

Yeah.

... when you ...

Because lot...

... select ...

... of people stick information on the web and it might be people are doing their own blogs about their condition, but that doesn’t necessarily mean that what they’re saying is right or applicable to you. Because if you have asthma it doesn’t mean the next person next to you with asthma’s the same as you. Not at all. They could be hugely different. And also some web pages will be dot com or dot biz and they’re not specifically there, I know now through learning that those web addresses mean that they’re a business so your well-being is not necessarily at the top of the agenda on that web site, they’re trying to flog you something.

So I’m more wary. If it’s something like the National Asthma Campaign, or the Anaphylaxis Society who are backed and supported by professors or very, you know, leading edge consultants in that field, then I will read their web pages and any links on those web pages I am much more likely to trust.

So would you follow a trail though?

Oh.

You know, go through and ...

Yeah.

...look at other links....

Absolutely.

... and see where it leads you?

Because there might, there might be links that I’ve never thought of and I’ve never heard of. But they might then be on there. I mean, the NHS web site is very handy, there are lots of links on that web page but it assumes that you’re confident using a PC.

And I know lots of people who aren’t [laughs] so they can’t use that arena for gathering information. I do, because I spend pretty much all my life working on computers so I’m used to them.

Plus, I think, my generation are a lot more familiar with it anyway.

But do you think that is a barrier in some ways then, that some people aren’t ...

Hmm.

... au fait with ...

They aren’t au fait with how to cherry pick the information.

Right. Yes.

And I think that’s where they can fall down. Or they can be taken advantage of. Or frightened by it.

Hmhm. So you’ve got to be a bit cautious?

I would say you’ve got to be extremely cautious.

And when, if you find a web site you like the look of, look at their address, look at their contact information, look at who supports them.

And what sort of things will be, will you be looking for?

A very clear and obvious web site, because sometimes the less reliable web sites don’t look very professional. The, it’s, they’re very busy and there’s little pop-ups and flashiness and sparkles and flashing text and everything ... and generally a professional organisation that is aiming to advise won’t have that. It’ll be nice clear headings, simple, obvious tabs of where to go to next and what to click on.

So is it information and advice that you would mainly be searching for?

I personally look for technical information.

Not so much advice from other people but that’s because I’ve lived with it all my life and I now know a lot because I’ve had to live with it for nearly 40 years.
Hearing about other people’s experiences could offer valuable information and be reassuring, but there was also concern about misleading or unbalanced information or what Melissa called ‘one-off horror stories’. Eileen pointed out that you need to be careful about logging into chat forums where what you find may be "just giving you sort of granny’s advice, which really doesn’t work". Jenny also advised caution.
 

Jenny says it’s useful to hear others’ experiences of medication but it needs to be balanced and evidence-based. Well-meaning people may say natural remedies are safer than steroids – but steroids keep her alive.

Jenny says it’s useful to hear others’ experiences of medication but it needs to be balanced and evidence-based. Well-meaning people may say natural remedies are safer than steroids – but steroids keep her alive.

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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I think sharing experience is, it’s good because it gives you an insight into how other people have coped with the same thing, but I think it needs to be moderated properly and sort of controlled, in a way, because you do sometimes, you get people going off on a rant about something, you know, “I would never touch this medication again because it does this and this and I would advise anybody not to take it”. Well, hang on, that, yeah that’s dangerous; you can’t just say, “Don’t take your medication”, because it, you know, but if you say to somebody, but if you’ve got somewhere that’s says, “Well, OK, you know, I took this, this medication, it’s given me this side effects, I wouldn’t recommend it, or no, I wouldn’t take it again, but you know, you follow your doctor’s recommendations”… and you know, it’s better that – do you know what, do you know what I’m trying to say?

Yeah, I can see that side of things. Is there, I mean is there an aspect of it that’s helpful, do you think or generally speaking or..?

Yeah, because it proves you’re not alone. If you’re having a sort of, if you’re having a problem with something, you know, an, an issue let’s say either with medication or with your life style or, I mean, I know on Asthma UK there’s a real, forum thread about, benefits and, you know, the current changes in assessment and stuff and you know, different people’s experiences and things and it’s sort of, they’ll sort of you know, somebody will go on and say, “Oh, you know, I had my assessment and I was advised this and …” so they’ll say, “Well, I’ve got maybe, you know, if I did that instead or whatever, you know …”

So there’s lots of practical ways that it can be of help?

Yeah.

Yeah.

But as I say, it’s, it just comes, it’s a case of finding a, what’s the word, a relevant, you know, a reliable source.

Yeah.

You know, that is, as I say, well moderated and, and so… so that you’re getting a well rounded view rather than a, a biased, you know, don’t do this, don’t do that. I mean, the, the classic one that gets everybody riled up are, are steroids. “Oh, you shouldn’t take steroids, the side-effects are horrendous, you know, you should be on as few as possible, blah de blah de blah”, you know, and it’s like, “Yeah, but if I stop taking them I’ll die, because, A, I’ll stop breathing and B, I don’t produce any so I have to..” I will be on steroids permanently for the rest of my life because my body stopped producing the natural version. But I have, I have a friend who is a, a, a holistic therapist and he’s on and on at me about, you know, “You need to – oh, you take far too many steroids, far too many, you know, all your drugs and everything, surely, surely you could be on less drugs? Have you tried this homeopathic remedy, have you tried that?” And I’m like, “Yeah, I know I have a lot of side effects from my steroids and they do cause me problems and I have side effects from the other drugs, but I wouldn’t be here without them”.

You know, you’ve got to find the balance. Yes, I would love to try some of these, but some of the homeopathic stuff doesn’t mix with some of the stuff that I am on and I can’t just say, “Oh, well I’m not going to take that any more”… because the implications are just too big, and I think whilst some of these well meaning people who are on there are saying do this, you shouldn’t do this, you should try this; yeah, but they need to sort of, you know, they are healthy people who are taking supplements and things to make them even healthier. I am a sick person who’s taking medication to survive. And yes, I would love to be healthier and, you know, be able to eat, take whatever oil or whatever they sell there, but at the end of the day…
 

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Some people said that they felt that doctors and consultants may not always be receptive if you went to see them armed with information you had found on the internet. Julie said, "If you go to a doctor and you say, “Well I’ve looked at something on the Internet” they’re inclined to say, “Don’t believe everything you see on the Internet”." She felt although it can be easy to be misled, equally it could save GPs a lot of time if patients were more informed when they went for a consultation. Catherine said that although "some consultants, as soon as you mention the Internet, you get a roll of the eyeballs’; her new consultant listened carefully to her theory about why her symptoms had changed. ‘He was very respectful about the fact that I’d researched it on the Internet and actually found the right conclusion."

(Also see ‘Dealing with health professionals’, ‘Messages to health professionals’ ‘Support and support groups’, ‘Childhood onset’, ‘Managing asthma – reviews and action plans’ and ‘Emotions and coping’).
 

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