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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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]
SHOW TEXT VERSION
PRINT TRANSCRIPT
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]
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.’
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.’
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
But it certainly explains my personal experience.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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…
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
(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’).
Copyright © 2024 University of Oxford. All rights reserved.