Spirometry testing??

[Cakerunner]

Hi there

Bit of a rant coming up....sorry...

So, some of you know I was very poorly after Christmas for months...various diagnosis, endless antibiotics, nothing helped my chest at all until I got inhalers....started to feel better, went back to work.....Covid closed everything down....😒

Fast forward to now, I'm still on Fostair as a preventer, well, I think its a preventer? At the time the nurse told me to always have a ventolin inhaler with me just in case. That was months ago......after having to take only the Fostair, 2 puffs, twice a day, for all those months, I now find I'm needing more Ventolin. Not feeling great either....back at school, small, snotty children, with poor hand hygiene, despite our best efforts, no social distancing at all....and no masks in the classroom 🙄 So, I've probably caught a cold.......I called my surgery to request an appointment to talk to asthma nurse, my GP has not been seen for months nobody is allowed in the surgery at all! But, I thought, I'll get a little advice.....nope, the receptionist said. "The nurse isn't here....might be here Friday, but she has s full list..." I explained that I needed some advice about my inhaler because I'm needing more......"Oh, well, shes not here......her book is full on Friday "........was all I got!!😳 When I asked if I could finally have my spirometry, to actually diagnose what I'm dealing with the answer was "No, we're not doing those ".....Am I asking too much! Honestly, what does it take to get a little help, considering that I've not bothered them for months, never had an actual diagnosis, and was told to "Not come to the surgery, its too risky.....just go back to work you're fine!" This was the GP, in the middle of the pandemic lockdown..........I just want someone to acknowledge that I'm struggling......I possibly had Covid before it was known commonly in this country. But nobody even acknowledges my struggles....I'll just get on with it then shall I?? Figure it all out by myself, like I have done since March.....jeez.

Apologies for the long rant.........I've finished now 😐

UPDATE-If you're interested? So, I've now had conversations with both the nurse at my surgery, and my GP eventually...took quite a while!...nurse is calling again on Wednesday this coming week. The upshot is that I've now had a chest xray, and blood tests. Nurse says she can diagnose asthma, or not, by my peak flow and diary....doctor says I've got raised levels of CRP that indicates inflammation somewhere.....but he wants a retest in 3 months. I'm beginning to feel better anyway, perhaps it was my bodies reaction to a common or garden variety virus? What I know now, that I didn't know before is that Fostair takes a while to get going in the dilatory capacity......hadn't realised that before, maybe I'm managing better because I understand how to use the inhaler a little better?🤔

[AirIsUnderrated]

I’m so sorry. This has hit everybody hard.

I work in a doctor’s surgery and every patient who is seen face to face takes twice as long because of the PPE and cleaning so there are only half as many appointments available. Then you add in that the nurse has kids too and has had to self isolate a couple of times, because she can’t get a Covid test either. And the GPs as well. Not to mention the receptionists who are also taking 40% more calls than this time last year with half as many staff. Everyone is run ragged. Oh and spirometry tests in our place have been stopped completely because of the risk of aerosol transmission and the cleaning of equipment. So that explains why. But it doesn’t help you, and you need help!

Have you tried speaking to the lovely Asthma UK nurses? They have been truly amazing for me. Also your pharmacist might be able to help - they have more clout than they used to have. If you need immediate help and can’t get to speak to a GP then there’s 111. If they triage you and send an urgent report to your GP surgery, you jump the queue. And of course there’s 999 if you’re in real trouble.

I’ve also recently been started on Fostair. I wasn’t even told I could still use the blue inhaler - I haven’t even been able get a consultation at all. They sent the new script to the pharmacy who just explained how the pink thing works and the cleaning etc.

Your rant is fully justified! I hope you get the help you need and feel better soon. 😊

[Cakerunner in reply to AirIsUnderrated]

Thank you, I do appreciate the problems they must be having at the surgery.......I do just feel ignored. I shall call the lovely people at Asthma UK I think. The problem I foresee, is that when I contacted Asthma UK in early lockdown, I had been sent home from work, only two weeks after going back, the nurse I spoke to was absolutely lovely. She reassured me, gave great advice, only problem being when I finally got to speak to the asthma nurse at my surgery, she was unimpressed with what the Asthma uk nurse had said! Didn't seem as though she wanted to listen, I thought it was because another nurse had told me? Felt like her toes were being stepped on maybe? I don't know.......anyway, in the absence of help from my surgery Asthma UK it........thing is, until you have a diagnosis, you don't get flu jabs or anything do you? Wait.....you mentioned cleaning? Do you have to clean the inhaler thing? I wasn't told about that.....🙄

[AirIsUnderrated in reply to Cakerunner]

You are eligible for a flu jab if you’re on a prescribed preventer inhaler, whether you have a diagnosis or not. That is what triggers the invitation. 👍🏻

The cleaning of the spacer is just as Jollygood said, and the instructions were on the wrapper, and actually printer on the device itself as well. There are some lovely little videos on the Asthma UK website showing how to keep it all clean.

[Cakerunner in reply to AirIsUnderrated]

Oh it's the spacer you're on about cleaning?! Sorry I misunderstood, I have a volumatic one, and I know about cleaning that. I thought you were on about the pink thingy, the actual inhaler thing? 😄

[AirIsUnderrated in reply to Cakerunner]

Well yes, that too, but all he said was to check for dust and wipe the mouthpiece if you use it without a spacer, which obviously I do anyway because it goes in your mouth! It wasn't rocket science, my 3-minute "training" with the pharmacist. I should have asked what to do if it doesn't keep the breathing under control, but I didn't. I know now. 👍

Did you manage to get through to the Asthma UK nurse?

[persil]

I sorry your poorly the GP surgeries are sh ...t and hidding nurses are lef to do everything if you feel any worse go to A and E and explain to them the awful service you are receiving and get them to advise it will probably be a stronger dose of prevented. Stand your ground next time you find a unhelpful receptionist ask to speak to the practice manager. Asthma kills and it a serious disease don't be thobbed off best of luck I hope you feel better soon.

[Jollygood]

How frustrating. Re the cleaning, my AN told me to clean the spacer every week in soapy water. Apparently it makes a difference. Great advice above from airisunderrated but I would add that when I do get to speak to somebody I always make sure there is a follow up call booked; 'shall I speak to you again in a weeks time?' That way I know it's not just left open ended when you're struggling. Virtual hugs from here....

[AirIsUnderrated in reply to Jollygood]

My registered practice won’t make advance bookings for anything yet. It’s all on the day, ring at 8am. Where I work there are appointments for review that the clinicians can book for you. Everywhere is different.

[Jollygood in reply to AirIsUnderrated]

Yes, I think I'm lucky in that my AN will at least book a follow up phone call. When I was growing up you used to be able to book an advance appointment with your family gp. Ho hum!

[Troilus]

Hi Sonia,

Pandemic or not you need to have a conversation with a GP or an asthma nurse. As someone has suggested, ringing 111 is probably the answer here.

Maybe they will organise a telephone call with your own GP or an on call GP. It doesn’t really matter who.

As for spirometry, it is very sensible of your surgery to cancel this during this time. You do not necessarily need to do this to get a diagnosis of asthma. This can be done from your symptoms, peak flow diaries and your response to your medication.

And yes, your Fostair is a preventer inhaler. It opens the airways for twelve hours and also contains an inhaled steroid to reduce and prevent inflammation.

Chin up and keep pushing.

[Ts777]

If you can, and I know some don’t have the option, maybe you should consider a gp change?

[twinkly29]

I would agree with AIU about calling the AUK nurses for advice. Alternatively can you request a phone appointment with your GP?

It does sound as if the Fostair (definitely preventer) was helping until recently and that currently you're in a bit of a flare. If the ventolin is helping when you take it, keep up with that for now. It may be that once you get past this blip (as you say quite possibly a cold or other viral thing), you'll go back to being ok on the ventolin.

As Troilus said, the spirometry isn't necessarily needed and wouldn't actually change your treatment if it was confirmed asthma.

It's rubbish that your surgery don't seem to have an effective system. Passing the buck or brushing people off isn't one! But maybe requesting a phone appointment with GP is the way to go or 111 can facilitate this if necessary as others have suggested.

[Daisy_FC]

I'm sorry you are having such a rough time.

It might be worth trying 111 if you are having a bad day so that they can assess you at the time - you might at least get some advice or medication change if you are seen by a GP. AsthmaUK are brilliant too.

When I was first diagnosed with asthma my GP said the testing isn't always needed and based it on my response to the inhalers he prescribed.

I have found it does take time and sometimes lots of conversations - with GP's/nurses that have different levels of experience dealing with asthma - to really understand what is going on. I know it is difficult, but keep pushing, your health is important.

[Cakerunner in reply to Daisy_FC]

Thank you all so much for your help! Once again this forum comes to my aid......more help here than anywhere. Ive decided to contact Auk and speak to z nurse......and to call 111 if it gets bad again tonight.....and go from there.....interesting that some people said they've been diagnosed without spirometry.......my GP just kept saying I don't have a diagnosis! I mean, surely he's the one qualified to do that?🤔 anyway.......thanks everyone

[twinkly29 in reply to Cakerunner]

It can be used as part of a diagnosis but one can have normal spiro and other factors which still indicate asthma. It may be that they hadn't been able to marry up the other factors, observe things over time etc because of covid. Fostair helping would be one (though not the only) consideration. Were you asked to do peak flows?

[Cakerunner in reply to twinkly29]

Yes, I've recorded loads of peak flow readings. 😊

[twinkly29 in reply to Cakerunner]

They should help too with diagnosis which should save needing the spirometry. If only a GP would look at the stuff....!

[Cakerunner in reply to twinkly29]

Indeed!!

[Gareth57]

Hi I have a Fostair 100/6 Nexthaler (dry powder version) and have been told by a nurse at the surgery and a pharmacist that if you are needing more ventolin you can up the dose of Fostair to up to 4 twice a day, which works for me. I would check with your pharmacist to see if yours is the same.

[Cakerunner in reply to Gareth57]

That's an idea as well......might get some sense from them!

[Jollygood]

How are you feeling now Sonia?

[Cakerunner in reply to Jollygood]

Hi Jollygood. Well....I've kept going to work, and as such I haven't managed to get in touch with a nurse....however, I began to feel a little better during the week, I upped my preventer and took one more puff........still using ventolin when needed but not quite as much. However, I'm making it a mission to get to speak to a nurse during this coming week because my upper back and ribs are now feeling a bit sore? Thank you for checking in on me