Hi everyone,
I hope you don't mind me posting this message here. I am a doctor and I'm teaching a bunch of medical students about asthma next week. Obviously we cover all the technical details but I'd like to give them an idea of how it is to live with asthma.
If you had 3 things you'd want them to know , what would they be?
I'm also a mum with a son with asthma, so I get to know the other side too (sleepless nights, trips to A+E, etc etc!)
Thanks so much if you can help!
D.
Hi there,
I certainly don't mind anyone posting here if it will lead to a more understanding/sensitive generation of medics! I must say, though, that not all medics have a lack of understanding or sensitivity!!! If I had three things I would like a future medic to know, they would be:
1. NOT ALL ASTHMATICS WHEEZE!!! (I am sure that many people in this forum would agree with that!)
2. Sats can be misleading - I, for one, have relatively normal sats for a good while until they suddenly drop and I crash into respiratory failure - this has lead to paramedics/Drs/nurses thinking and telling me I am only 'having a panic attack' and to count to ten and calm down.
3. Thirdly, please just remember that asthma can be much more than just a 'blue-inhaler illness' - many sufferers struggle with day-to-day living and can feel very debilitated/disabled due to the illness as well as the side effects of the many medications that some of us have to take.
I hope that you don't think that these are harsh words, they certainly aren't meant to be - but I feel that if medics knew those three things, my life would be made much easier as I would be more inclined to seek help when I needed it, rather than waiting until it is very severe due to past experiences of dismissive medics. These bad experiences have lead to deteriorating mental health, which in turn can have a negative effect on asthma, and thus a never-ending cycle.
I hope that this helps!
Hi 
At the moment, the main thing that comes to mind is that a lot of the time doctors and nurses don't necessarily understand that you can appear fine but feel rubbish (if that makes sense!). It's really frustrating when you just kind of get rushed out the door with a 'you're fine, just give it a few more weeks'! I know there's not always going to be something that can help, but to not be made like I'm just a time-waster would be nice!
I guess what I'd like more people to understand is the emotional side of asthma- it's exhausting and really frustrating at times. I find that as a student it can cause real issues with social life.
Sorry it's not really 3 things!
I would say that some doctors, or future doctors, need to realize that asthma is a 24/7 condition. Even if we seems to be good or not so bad during the appointment, the rest of the time when we are active, lungs might not feel that good. An appointment of 10-15 minutes is a screenshot in a whole movie and not always representative.
Furthermore, I think they need to look far over the numbers. Peak flow, FEV1 and Sat are not always representative of the feeling. Lung can feels very rubbish but the peak flow is not so bad, and vice versa.
Finally, many doctors doesn't consider the emotional impact of asthma and medication. Lack of sleep, hospital visits, prednisone and feeling debilitated by asthma can drive you crazy but doctors often dismiss this point and focus on the physical part only.
I cant say it better than chukkin really, I agree with every word. Id add tho to really listen and get to know the patient. We live with our asthma every day and know what is normal and unusual for us - regardless of whether that follows standard patterns or not! We also tend to get to know what treatments are effective and when, again regardless of what is 'normal' - eg for me you can give me iv treatments early or you can stick with inhaled, wait and see what happens, and STILL end up giving me iv later!
I'm glad this post isn't what it looks like on 1st impressions - i thought it was going to be someone really struggling and wanting help NOW!
I actually like this topic although i can't really add much, i'm very thankful to not be severe but i am another non-classic non-wheezer, i'm not a quiet asthmatic LOL i just cough - a LOT!!
I totally agree with what others have said so don't want to repeat things but the most helpful doctors for me have appreciated:
Some asthmatics don't/rarely wheeze.
We live with asthma day in and day out which can be exhausting. It therefore helps to see the bigger picture and look at symptoms over a period of time and not just when the appointment happens to be. This is also quite important for me as I don't have big attacks but do have lots of moderate ones in short spaces of time (basically the result of the relievers doing their job but not for long.
Tied in with this is to listen to the symptoms and experiences rather than just using the SATs, pf etc. I think it is also important that the patient understands their asthma too so can explain this to the doctor - we know our triggers, symptoms and what works well (eg I often need pred quickly as I can feel myself getting worse and if I leave it too late, I need several weeks rather than 5 days whereas others might play a more wait and see game).
I think the important thing is that everything to do with asthma varied widely!
Hi Dr Doolittle
What a good idea! Thanks for taking the time to ask what would make a difference to us - even that is important when you feel that you're just a set of symptoms that your GP doesn't really believe in!
Everything that others has said is relevant and probably can't be improved upon so I won't try, but please ask your students to take on board what we are saying to them. If we have been asking for help for 3 months maybe it's not enough to just nod your head patronisingly, tell us to keep using the same medication in the same dosage and send us away feeling as if we're a time wasting nuisance - we're not there for the fun of it, we're telling you it isn't working so isn't there something else you could to to help? If you don't know what would help, please say so. We don't mind if you want us to see someone else we just want to be back in control.
Thanks so much for taking the time to post. I know at med school they drum into you that the patient is the expert, you learn more from them at textbooks etc but it's quite difficult to get that accross in teaching sessions.
I will be passing on your comments next week and let you know how I get on!
Thanks
PS I will probably be doing this session again later in the year so any more comments posted I will compile for that
Ah shame, I missed it, unless I'm in time to sneak one more in? Thanks for asking though, I also really appreciate it and wish more doctors had your attitude.
But everyone else has said really the same as what I would say: we don't all wheeze, please don't slavishly stick to numbers, particularly peak flow (I can have OK peak flow but not such good blood gasses, or ok/good PF and symptoms which make things miserable). And the fact I am not having a life-threatening attack right now and am unlikely to have one in general doesn't mean it's ok to ignore quality of life issues.
I'd also reinforce the 'please be aware there's more to our life than this appt' and the 'please don't make us feel like timewasters'. I know I am a difficult patient; I hope not in the being rude sense as I always try to be polite and give what you say due consideration, but if it's the third time someone's said it and I know it won't work because I've tried it, and I'm tired because of bad nights, I might show my frustration a little particularly if the suggestion being made is 'go away, carry on with what you're doing and review in a few weeks' - I wouldn't be there if I thought I could wait or if what I was doing already was working! I wish so much that I weren't difficult and that if I have to have asthma it could be 'textbook'.
Also: not being able to breathe properly is horrible and frustrating and tiring, and I don't like it at all but it DOESN'T make me anxious! I guess I'm too used to it or something but I am able to keep calm; I just get a bit frustrated. So maybe you could tell your students: please don't automatically assume that anxiety is an issue - I sometimes feel that many doctors, even nice and understanding ones, project onto us as I have had a couple say they would feel anxious if they couldn't breathe. It would be understandable but at least for me, I feel like I am too used to it to get anxious that it's going to turn into anything horrible. If I get anxious, it's because I worry I will be dismissed as being anxious/problems are in my head!
I agree with everything said above I don't like anyone rushing through an appointment with me and ""coming back when it gets worse"" response isn't usually helpful as it is usually me coming when it is worse.
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