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

[EmmaF91]

Hi everyone

This is a repost of one of my posts from over 2 years ago 😱😱😂, but I thought it would be useful to update it, and repost it to anyone new to the forum and to asthma in general!

A few years ago I read an article about shared appts with GPs ( bbc.co.uk/news/uk-45770998 ), and whilst it’s not something I would like to do now, and it’s not something I’ve really heard happen for asthma yet, 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, or was too shy/introverted/embarrassed and after the appt I would forget them! I thought I’d make list of questions, 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 may need ‘preventative’ ventolin before you start (tho if you’re needing to do this more than 3x a week then you need to see youre GP 😉) , if it’s viral it may only be noticeable when you’re ill so that when you need to look for issues and up medication (with GP involvement)

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 by the GP will stop you over medicating without seeking help. I was never give a limit and know I abused my ventolin a lot, if it was capped to a certain number a day/week I’d’ve definitely seen 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 15 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!

Some other good questions people added last time were;

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?

Twinkly29

Do I need a rescue pack? If yes, when should I start it? And why do I need to do if I have started it?

I know some things have changed due to the current COVID situation, but hopefully you are still able to get appts with medics even if just over the phone! 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!

If you’re concerned or need advice The AUK helpline nurses are great and can be reached on 0300 2225800 M-F 9-5. Alternatively their WhatsApp service is 07378 606728.

[LDloveslattecoffe]

In terms of the questions - what I have learnt (THIS IS PERSONAL and not for everyone)

1. Is it really asthma? -

I was surprised I was not diagnosed before I was. My mum and aunt when young (now 70's) were told they were having lots of bronchitis but in last 20 years told now it is asthma.

a) Genetically asthma runs in my family -

- maternal grandfather, mum, maternal aunt, 2 maternal cousins and

- 1 paternal uncle, a paternal cousins child

b) asthma link to eczema and hayfever (myself and many family members also have this)

c) knowing symptoms I had 2 attacks before diagnosis but was highly susceptible to infections

2. What type of asthma do I have? -

I don't know and have never asked if it is in my records what type of asthma I have. I do know my triggers.

3. What are my triggers? -

I do know triggers - extremes of temperature, cigarettes, dust, dust mites, laughter, exercise

Hayfever (pollen allergies), Infections (Viral and bacterial)

4. What should I do if I notice issues? - I have an asthma plan but I have also recognised a pattern and have asked others if they see me getting more than 1 or 2 infections of any kind a year to remind me to ask GP about change of inhalers as current one no longer working

5. Is there a limit to how much ventolin I can use? - I know if I am taking too much ventolin based on an occasion when I had an attack and used my ventolin too much causing fast heartrate/palpitations

6. What should I do if I go into yellow at the weekend? - At yellow, I tend to increase my use of the combined inhaler and wait till next week but I am not advising anyone to follow my example.

7. What should I do if I’m in yellow zone, despite being on/just finishing the yellow regime (pred/vent/SMART etc)? -

I agree with Emma's advice.

Personally I don't just go on the PF as sometimes this could be low but I feel ok. So I tend to focus more on the symptoms combined with the PF. Do not follow my example though.

8. How long do the meds take to work/when should I see an improvement? -

I did not know till started going on this forum that ventolin could take 15 minutes to work. Knew it wasn't immediate but didn't think took as long as that. Demonstrates need to take ventolin as soon as notice symptoms or as soon as others tell you to take your inhaler as they can hear it sometimes before you.

With new inhalers I always persevere for 6 months before I decide if it isn't having an effect.

9. What if I can’t get an appt? -

With Covid many surgeries are using e-consult and I believe this is here to stay. It is a good system and can get a phone consult with GP. You can ring and ask them to do a phone consult if it is more urgent as the e-consult is 24 hrs before a reply.

111 is very good and they will send a Dr to your home if it is out of hours. Walk in Centres are also a good option if you can't get an appointment

10. What should I do if my ventolin runs out unexpectedly/how to tell if it’s running low?

This is not something that can happen because all my inhalers have counters on.

I use the Ventolin Accuhaler (round one).

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? My GP are good like that

What if it’s the weekend? You don’t need hospital, so where do you get help? See Question 9

Can you take your repeat to a pharmacy and pick up an ‘emergency’ one from them?

That's something I do not know. When you say Repeat - do you mean the sheet that comes with prescription that has a list of all your medications?

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?

I don't rely on peak flow my best is 410 but I can feel really bad at 300 (73%) to 350 (85%).

I can be having an attack at 250 (61%).

Symptoms increased breathlessness and wheezing. In an attack chest tightening and inability to get a breath, coughing and so on.

12. What should I do if I’m ill? - if I’ve a cold/virus do I need to see the doc?

Based on my personal experience - order a rescue pack of prednisolone when it is clear its an infection and starting to affect my breathing. Rescue is only 5 days. If by day 4 I don't feel better get a drs appointment (if relevant get a specimen tube to give a sputum sample)

[AirIsUnderrated in reply to LDloveslattecoffe]

10: Yes, your Repeat is the sheet that comes from your pharmacy with your meds.

Repeats are meds that you have been put on long-term, like inhalers, that you don't need a GP appointment to get every time. They include Variable Repeats such as prednisolone that you might not need all the time but you might have on your repeat list for emergencies. Then there are Acutes, eg. if you are on a one-off (hopefully!) course of antibiotics, and you can't request more of those without contacting your GP.

Most pharmacies will also let you ring them and order your repeats over the phone, although many GP surgeries will not allow this for safety reasons. There is also Patient Access, an app that you can download and register for free, which will allow you to order your repeat prescription. My surgery is now allowing requests for repeats by email as well (one good thing to come out of Covid) as long as you give your name, DOB, address and the name and strength of the med you need.

[LDloveslattecoffe in reply to AirIsUnderrated]

Thanks, I knew the slip is to order repeats but maybe I read Emma post wrong I thought she was saying you could take the repeat slip to the pharmacy and ask them to give you an inhaler without seeing your Dr. I thought she was saying Chemists can give you an inhaler without an actual prescription from a Dr??? Maybe I read that wrong.

You seem to be saying can ask Chemist to order i.e. ask Dr for prescription - I did know that.

I thought Emma was saying good take repeat list and show inhaler and chemist would hand you an inhaler and you can then walk out (without Dr involved at that stage) ???

[EmmaF91 Community Ambassador in reply to LDloveslattecoffe]

In an absolute emergency some can. But it’s for absolute emergencies only really. I’ve never had to use it but know someone who did (on a staycation, her ventolin pump ran out without her realising and then she started getting issues. Late night pharmacy could see her struggling, understood her pump was out and she was on holiday etc and sorted her out, which allowed her to not go to a&e...). But they could see she had one prescribed to her (as she had a repeat script in her name she just couldn’t use as out of area)... as a side this was a couple years ago and I can’t remember if she had to do a follow up emergency appt with a local GP the next day so they got it offical just a touch later

[AirIsUnderrated in reply to LDloveslattecoffe]

No. I work in a GP surgery and the script has to be requested (by patient or pharmacy), then the surgery staff (that’s me) sends the request to the GP who sends it electronically to the pharmacy. We have a 48 hr lead time to get it to the pharmacy but urgent scripts (empty inhalers count as urgent) get done within hours. The GP still has to authorise the script but doesn’t need to see the patient. Does that help?

[EmmaF91 Community Ambassador in reply to AirIsUnderrated]

As I said the only experience I have is 2nd hand and at least a few years ago, and I’ve never asked the question myself (and never needed it) but if it’s something that if you’re worried about your inhaler running out it’s worth asking! But hopefully it’s been cleared up now! I think this was before 111 was a big thing also (shows how long ago it was 😉), cause I’m pretty sure now 111 can put emergency orders through (ie get a doc/prescribing nurse to talk to you and put the order through), or at least get you OOH emergency appt etc 😅.

[twinkly29 in reply to EmmaF91]

You can buy ventolin inhalers from some pharmacies - I've done it once before when I hadn't got mine with me. The pharmacist "interviewed" me and took my GP details. I also needed a repeat prescription to show I was usually prescribed them. That was before the days of shared medical info as now maybe they'd be able to access the info remotely anyway.

[twinkly29 in reply to AirIsUnderrated]

You can buy ventolin inhalers from some pharmacies - I've done it once before when I hadn't got mine with me. The pharmacist "interviewed" me and took my GP details. I also needed a repeat prescription to show I was usually prescribed them. That was before the days of shared medical info as now maybe they'd be able to access the info remotely anyway.

[twinkly29]

Great post - it's really hard even when we're experienced to feel it's ok to keep asking things, never mind when it's new.

I would add that, when you're given a rescue plan, make sure you know exactly what you should do at each stage - if you're not sure ask again as they might need prompting to explain it clearly! They kind of think they're explaining well (but that's not always the case) but if you're not sure (then and there or after the appointment) just ask them to clarify things again. It's in their interests as someone clued up is more likely to be able to manage things themselves/deal with issues appropriately.

I should add that I know it's not easy when you feel you're badgering them or being a nuisance - but that's what they're there for and we shouldn't have to feel we're being annoying 😂

[Wheezycat]

Great questions, Emma! Even though can see I have added to them before I don’t remember the post. This time I will make sure to copy them and ask at my next face to face review whenever that will happen.

[_Badger_]

I absolutely should have asked question 11 at some point. I've had asthma 20 years and only learnt in the last 3 months that the persistant cough that I have all the time is actually my asthma. I have been massively under reporting my symptoms because I thought asthma was tightness of chest, shortness of breathe and wheeze. I still don't know the answer to how bad it should get before help but I'll be asking them next time.

I also find number 8 really interesting that it can take ventolin 15 minutes to work. Yet the asthma action plan says take a puff every 30-60 seconds up to ten puffs and if you don't feel better after that to call an ambulance. But that would be after only 5-10 minutes.

[Junglechicken in reply to _Badger_]

I’m guessing that AUK are on the side of caution. Much better to call an ambulance and get checked out even if you feel better when they arrive than hold out and be in a life threatening situation.