What I wish I had asked my GP/asthma nurse (when first diagnosed 😉)

[EmmaF91]

Hi everyone

I’ve recently read an article about shared appts with GPs, and whilst it’s not something I would like personally, it does bring up an interesting point - very few people know what to ask when they’re first diagnosed (with asthma)! I know I never asked questions, mainly because at the time I couldn’t think of any and after the appt I would forget them! I thought I’d make (another 😉😅) list, and people can tag in any questions I forget or don’t think of!

1. Is it really asthma? - a lot of people are ‘asthmatic’ but aren’t officially diagnosed via lung function tests/spirometer etc - it took me 7 years before I ever did a peak flow and 8 or 9 years before my official diagnosis via LFT by which time I was severe and the hospital was involved

2. What type of asthma do I have? - day to day it won’t change much, but knowing what type you have may help you identify and remove triggers or at least how to manage them! If it’s exercise-induced then you need ‘preventative’ ventolin before you start, if it’s viral it may only be there when you’re ill so that when you need to look for issues etc etc etc

3.What are my triggers? - yes this is usually a ‘trial and error’ thing, but if you’ve no idea it can be difficult to identify them - a lot of attacks are caused by multiple triggers at the same time so what was the cause? - if you’re an atopic/allergic type then maybe ask about an allergy test (either blood or skin prick) it may show something you haven’t yet connected - I didn’t know I was allergic to dogs as the only dog I really knew and visited a lot was my brothers, who also has a cat (a known trigger) - there goes my puppy snuggles with friends doggos 😢

4. What should I do if I notice issues? - yes you should have an asthma plan, but if you don’t this may prompt them into getting one. It’ll also reinforce when to see the GP and when to go to hospital

5. Is there a limit to how much ventolin I can use? - the answer is ‘no, not really’ but having a ‘limit’ given my the GP will stop you over medicating without seeking help. I was never give a limit and know I abuse my ventolin a lot, if it was capped to a certain number a day/week I’d definitely see my GP earlier!

6. What should I do if I go into yellow at the weekend? - Sod’s law states you’ll be fine until the GP isn’t available, but you’re not bad enough for hospital... should you wait it out til Monday and get an emergency appt, or should you go to the OOH service? Ask and see what your plan will be!

7. What should I do if I’m in yellow zone, despite being on/just finishing the yellow regime (pred/vent/SMART etc)? - it’s always a problem that trips us up - being borderline! What if you’re at the bottom end of yellow, bouncing in and out of red? Do you go to red zone treatment, do you stay in yellow for longer or do you hope you I’ll improve by itself? Ask them and see - if you’re in yellow then you should have already seen them!

8. How long do the meds take to work/when should I see an improvement? - some people expect immediate improvement from ventolin (it takes 10 or so mins), others expect steroids to start helping the same day so get worried if they don’t - it’s a question worth asking as to how long it’ll take to feel better and what to do if you hit that timezone with no improvement! Similarly when trying new meds - what’s the time limit before saying ‘no it’s not working!’

9. What if I can’t get an appt? - we all know the state of the NHS at the moment - getting normal appts can be difficult, let alone emergency! If this is the case at your surgery, ask them what they expect you to do - do you start the plan by yourself and ring the next day hoping for an appt then or will you get a same-day return phone call with a doc etc etc - each practice will have a different system so just double check it!

10. What should I do if my ventolin runs out unexpectedly/how to tell if it’s running low? What if I’m out and need my pump but have forgotten it? - it happens to us all - you’re at home or out, need your pump and it’s empty! Will they let you order a spare for ‘the just in case’, or will they do an over the phone prescription you can pick up that day? What if it’s the weekend? You don’t need hospital, so where do you get help? Can you take your repeat to a pharmacy and pick up an ‘emergency’ one from them? etc etc

11. What symptoms should I look for, and how bad should they be to get help? - a lot of docs/patients rely on peak flow as to when to seek help but what if you’re feeling bad and it’s ok? My first attack, I didn’t know what it was! I had never done a PF but my lungs felt like they were wrapped in cling film, I was very short of breath and I couldn’t sleep or eat or talk or walk - I thought I had a chest infection but no it was asthma!

12. What should I do if I’m ill? - if I’ve a cold/virus do I need to see the doc? Should this appt wait until my asthma complains? Should I pre-emptively up my meds? - depending on you and your asthma type these answers may be different so worth asking!

13. Do I need to take any special precautions/changes in my life? - an answer you hope will be no but some people may need to change things up a bit. Maybe you’ll have to inform airlines if you’re planning on trips aboard, maybe you’ve got occupational asthma and things will need to change at work, maybe you need to do nothing at all!- it’s worth just double checking that you’re doing all you can to help keep your asthma calm!

I hope that helps those new to the process, and please feel free to tag extra questions you asked (or wished you had!) in the comments below!

*Update*

Some other good questions from the comment section;

Tabitha58

How does my obesity affect my asthma?

Will my asthma affect my other health conditions? (Mental or physical!)

Wheezycat

What should I do if I ‘hover’ at a boundary for a few days?

What changes if you’re on the SMART/MART regime? Can you still use ventolin? What’s the max dose? When should you seek help?

[EmmaF91 Community Ambassador]

Ps here’s the news article I was talking about... Shared GP appointments trialled - and patients 'like' them bbc.co.uk/news/uk-45770998

[Riddickfan]

You're right there are a lot of questions that one doesn't know to ask about asthma when first diagnosed, and things like triggers etc. are things only you will know and learn about unfortunately (keep notes for yourself). About the ventolin running out, always make sure you have a spare unopened one, at home. If going on holiday, always pack a spare one. If you think you haven't been prescribed an extra one for a spare, mention it and bring up those concerns, because stress doesn't help asthma either.

[Lysistrata Administrator Community Ambassador]

These are all good questions...and I'm.supposed to be an experienced asthmatic and still don't know the answers to half of them for me! Thanks for the post, really useful for a range of people.

The shared appts thing looks interesting- probably not for me because no one would want to share with me given I'm a freak and confuse the doctors. But I can see how it might function like this forum in some ways - I remember years ago how good it was to find that other people had some of the same problems/symptoms/triggers as me.

[EmmaF91 Community Ambassador in reply to Lysistrata]

Thanks - I think after 3 years of being a severe asthmatic I’ve finally answered *most* of them - still question what to do if I’m borderline tho 😅. I thought the list would be helpful to those still investigating their condition who don’t know what they need to know! It’s better to be prepared than to have to work it out in an emergency!

Yes I thought that about the shared appts! It almost seems like a support group with a doctor there to answer questions! Ideal for the ‘average’ condition, just not those who are difficult like me and you 😉. I think if they could organise something similar for severe asthma in my local area I’d defo go to it!

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

Oh the borderline thing- yes that is hardest! I always still ask them how long it's meant to take to work because even if I know, it makes it useful for them to say so I can think well this would be a reasonable period to wait.

I know my triggers and what type of asthma I have but I am.still clueless about what to do half the time re if the yellow gets properly red (I think I basically live in the orange zone half the time), and used to always pick the wrong service it seemed! Plus you have to call 111 here for out of hours GP but they appear to have a big red Ambulance button which I don't necessarily feel is needed. I guess they have been right sometimes but I became sceptical when I used the website for self care advice for a 0.5cm burn and they claimed I needed A and E!)

[EmmaF91 Community Ambassador in reply to Lysistrata]

Oh yes - I spent a couple of years in yellow! Like I’d have 2 good months, when I didn’t have allergic or weather triggers, then the rest of the time I was yellow/red unless on steroids! Since being on the biologicals, I think I have improved into living in the green/yellow zone unless ill or a major trigger!

Yes, 111 always seems to want to send you to hospital as they can’t triage properly and can old give advice, and breathing difficulties is a big red flag to them 😅

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

I don't even think I know what my zones are anymore lol! Peak flow not sensitive enough and FEV1 persistently rubbish. I find it too easy to talk myself out of doing anything.

I did once over-reassure 111 - I was actually having a bad attack but was.still aiming for GP as I have been so conditioned into going for the lowest service and hadn't entirely registered what level I was at. They still sent an ambulance but made it low priority - when the paramedics arrived I really wasn't that great (but still saying I was ok!) and he said breathing difficulties should never be put as low priority and they should have got to me sooner. They say to call back if you get worse but I generally feel I can't unless way worse. Like you I tend to avoid ambulances as I want to try and get to the hospital where I have clinic, plus I don't fit the LAS protocols well.

[Wheezycat in reply to Lysistrata]

Yeah, that’s me sort of.

I have a cold right now which, of course, has triggered my asthma. I doubled my Symbicort and that has held the peakflow steady just round 80%......so did I need further help or not? Especially as my breathing didn’t feel laboured. But midday today it sort of did, so I got myself an urgent appointment, and it turns out my lungs snap, crackle and pop (aka known as wheezing and crackling), and my oxygen level were down to 93. Not so bad I hear some of you say, and you would be right, but I don’t want to end up needing far more care for lack of self care on my part. It has happened before. So I am now the proud ‘owner’ of prednisolone (goodbye sleep) and antibiotics. Hopefully that will be quite enough.

I read the questions and many resonated with me, but I need to read them again when my head is clearer. We are supposed to seek help if our pf is 60-80. What if it sticks stubbornly on 80? Do you or don’t you get help?

[EmmaF91 Community Ambassador in reply to Wheezycat]

Oh no! I hope you start to feel better soon! Yeah 93% is not a good score to have without help, esp as an attack is classed as ‘life-threatening’ if it’s below 92 😬 - fingercrossed now that you’ve got the meds it’ll sort itself out!

I’m currently at the other end - I’m bouncing from 50-60%, but my ventolin stops it dropping further (or resolves it if it does!). My GP is aware, I’m 1 week post infection and already on roids - so what do I do? Im not bad enough for hospital, not good enough to function, my GP can’t help so 🤷‍♀️.

There really should be guidance on what to do when you hoover at either border! I’ll add this question to the list!

[Wheezycat in reply to EmmaF91]

Yeah, I also need more guidance. The asthma U.K. nurse was surprised to hear I am normally on 4x Symbicort 200/6. I have tried to lower it when I feel well, but mostly it has not lasted more than a day or two. So another question would be about thorough guidance if you are a SMART/MART person.

I am sorry to hear of your struggles. It doesn’t sound nice at all.

So many conundrums.

[EmmaF91 Community Ambassador in reply to Wheezycat]

Yes more guidance for (S)MART regimes is needed! When I was on it, I was on fostair nexthaler 200/6, taking up to 8 a day (maintenance of 4 daily) and ventolin on top - it was only speaking to asthma UK that I found out that it was meant for the MDI 100/6 version, and that technically I shouldn’t have been using my ventolin 😅.

I’ll add this question to the list!

Don’t mind me - I’m just frustrated and having a pity party today 😅. Getting mepo tomorrow so I’m hoping that’ll sort me out 🤞🏻

[hypercat54]

I can't see how a shared appointment would work bearing in mind everyone's medical history is supposed to be private?

[EmmaF91 Community Ambassador in reply to hypercat54]

I think it’s repeated reinforced to patients about confidentiality- and I suppose if you don’t want to share you don’t have too? You only disclose to the group what you want, and the doc stays generic. From the sounds of it, it’s mainly for general info and advice so the doc doesn’t have to keep repeating themselves. It’s still an optional thing so 🤷‍♀️

[Nutzs47]

I’ve had atopic asthma 16 yrs and unfortunately I work with my main trigger which is paper dust but I’ve never had and of the breathing tests or a hospital referral just had /have very good asthma nurses and drs .After a bad year of poor control my asthma nurse increased my meds to fostair /spiriva and monteluckast which has now got it under control to the point that I’ve had a couple of colds which would have affected my peak flow but I’ve actually stayed above 400 .i think I’ve been very lucky with my asthma nurses as they’ve always talked things over with me and most of all actually listen to me .After having a bad year my manager at work also supports me ,he has a copy of my action plan ,a spare reliever and a peak flow monitor ,he has also learnt to notice the signs of an attack fortunately he hasn’t had to intervene yet 😁

[ChrissieMons]

This shared appointment idea doesn't sound to me like a proper appointment, more like a support group for people with the same condition which is led by a GP. As Emma says, confidentiality would be an issue, and I might not like to admit my problems to the whole of my village (which is how it might feel!) In any event, can the overworked GPs find time for this? I am interested to see what develops!

[Tabitha58]

Very helpful post - thank you so much

I am newly diagnosed and currently struggling to know what is 'normal' for me and how to manage my asthma. I was diagnosed with exercise induced asthma - but a recent viral infection led to a flare up.

I have recently learned that my obesity is no help to my asthma! It also affects the way the inhalers work as the fat cells on my lungs make it harder for them to absorb the treatment apparently - which explains why I am finding that I have to use double the doses recommended in order to find relief.

I knew that obesity was a bad thing for asthma but never knew why - this makes perfect sense now and as visceral fat is the first fat to go when losing weight I am encouraged to do something about it! I wish doctors could give this information - and maybe this is where the shared appointment system would be good as the appointments last over an hour and prevent the doctors having to repeat information to many patients: there is also the fact that other patients may ask questions that you have never thought of! I have attended group sessions for information and support with depression and anxiety and see no reason why these shouldn't be just as helpful with other conditions too - they are more like workshops really.

So maybe another question, if appropriate, could be "How does my obesity affect my asthma?"

I would also like to ask about managing mental health issues and asthma

[EmmaF91 Community Ambassador in reply to Tabitha58]

You’re welcome!

Good questions! With you’re permission I’ll add your questions to the end of my post so everyone will see them.

Yes the ‘different’ questions people would ask is why I wrote the list and want people to add to them. I’m very bad at thinking of questions in the spot, (or even asking them when I think of them - a benefit of a group session/this site as it’s anonymous!).