A big hooray for a good asthma nurse!

[Wheezycat]

Today I had the first proper-ish annual asthma review for two years. Last year I was vaguely triaged for one, and was fine, but by now issues had cropped up, especially my new, strange AAP, but also having had a few incidents in the last few months.

This nurse, who I have met before, was great! Some contradictions on my AAP were straightened out, and some mysteries explained.

A good asthma nurse is really a person to treasure! I was uncharacteristically nervous before, dreading a person with little experience would ring and I would get nowhere. So nervous I felt almost quite weak at the knees from sheet relief after.

Has anyone else had really good experiences of an asthma nurse?

[twinkly29]

That's great that you had a good review and stuff got sorted out! Also lovely to read a positive story - a phone call too ha ha!! (My phone calls have been great over the last year but many people are cross about them it seems.)

Did she sort out the mart on the Fostair 200/6 thing?

[Wheezycat in reply to twinkly29]

Indeed she did! I had been given a standard pf number rather my own, she confirmed my concern re advice to use more than 4 doses of Fostair 200/6, told me I have/had a low eosinophilic count, which I never even knew I had been tested for etc. I got so excited by the usefulness and helpfulness of it all that I have only slept half the night! 4am found me (trying to) read scholarly articles on non-eosonophilic asthma, and what I managed to glean really fit my experiences! I know I am sort of adding 2+2 and getting it to 73 but for all of that it feels so confirming of my experience of my asthma.

[twinkly29 in reply to Wheezycat]

No it really is a great feeling when you are listened to or feel some progress is made! Enjoy it! Though I hope next time it's not at 4am! Having an appropriate plan should be reassuring but moreso because it's come from/been tweaked by someone who makes sense and in whom you feel confident 😀

[Wheezycat in reply to twinkly29]

Quite! I didn’t know who it would be. Most are fine, but not all, but this one (who once upon a time diagnosed me) was great! My only ‘problem’ right now is that feeling ridiculously pleased - an eureka moment- I want to tell everybody about it, but most people understandably just glaze over. Thank goodness for this forum!

I see you, too, was awake at ridiculous o’clock.

[twinkly29 in reply to Wheezycat]

Ha ha yes.... I often am!

Having asthma-understanding contacts is very useful in these situations! Actually though, you're also providing a service as I think it's good for people to see, or be reminded, that there are (sometimes 😅) good outcomes and positive things going on!

[Wheezycat in reply to twinkly29]

I agree! I have often been met helpfully, but not always. Like most, I suspect, I find it all harder by phone, but a good exchange on the phone is far better than a poor exchange face to face .

[Poobah]

I've had good and not so good asthma nurses over the years. Currently my AN is good and listens to me as an individual. She was better than the last couple of consultants I'd seen, mainly as the consultants failed to listen. She has asthma herself and her own experiences have taught her that doctors don't always get it right - repeated steroids & antibiotics to treat the side effects of prescribed asthma meds. She finally suggested a change in her own asthma treatment and everything settled. It was at that point she decided to specialise in asthma.

[Lysistrata Administrator Community Ambassador]

So glad you had a helpful review and sorted out your plan! It definitely makes a difference when they 'get it' and listen properly, and treat you as a sensible adult. I would also rather have a good phone appt than a bad in person one.

My experience with asthma nurses (mostly specialist ones) is a bit...variable. I feel like when I come across a good one, and I have encountered quite a few, it will be one of the following scenarios:

1) Excellent, but about to leave

2) Excellent, but I'm about to move and won't see them again

3) Excellent, but not actually at my hospital (occasionally I get caught out by hospital tourism)

4) Excellent, at my hospital, but not usually someone I get to see (the best nurse I've met at mine usually only sees patients getting biologics. Rub it in further that I can't have those, why don't you? )

5) An excellent specialist nurse, but not in asthma (I see one for adrenal insufficiency. She's great but I'd like her for asthma too lol).

5) Sounds excellent, but have never met them because my friend somewhere else is seeing them (yay for friend, but can you clone them maybe?)

6) Excellent, but have only talked to them on Asthma UK's helpline. Still likely to be better than my usual team despite having no notes and not seeing me, but cannot actually change my treatment (can still save my sanity though!)

[Wheezycat]

Yeah, as was as tense as anything worrying who would ring. This one I have met before but some time ago. We are in a large surgery group with lots of surgeries, and she is not normally where I go. The more local ones have largely been ok, but not mostly as knowledgeable and some i don’t want to meet again, so then getting her was top prize!

I am sorry to hear it is so hard for you! But I know you have a less well known variation, that you don’t fit the standard mould. That always makes it harder. I always find it harder, whatever the issue, if people go for dogmatic, standard basic response. It is so frustrating! And possibly dangerous.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

Oh yes, I always worry about who's going to ring! I have a meds review coming up and while I don't mind doing things by phone, it seems to be harder to pick which GP you get for anything currently. You do an econsult etc which is fine, and I actually like being able to write things for them to read before they talk to me - I'm better with writing and less likely to forget something important vs in the moment.

But I don't know who I'll get. One of the partners for example was fine when I had a straightforward back issue, but I'd never want to see her for asthma after a previous encounter.

And yes it is hard being a unicorn! My team is so intent on eosinophilic and allergic being the most problematic types of asthma that it feels like they just don't want to acknowledge other types (especially when there's less known about them). I was impressed reading that your nurse said you were non-eos but didn't try to claim it meant your asthma was less of an issue etc. I've also had to do a lot of my own reading on this and it definitely is a relief when you get 'oh yes...that is me!' Though a lot of the time I also get 'what is my consultant on about? that's not what the literature says'.

[Wheezycat in reply to Lysistrata]

She only told me my eosinophils were very low, no more, just to confirm, really, that allergies is not the thing for me, not on this one anyway. It is much as I have felt for quite a long while. But I then seem to glean that the standard meds (steroids) may not be the best for it, though also there is no alternative. But I read this at 4am, so I didn’t register when it was written. Things could have moved on. Still, it is good to know, it gives me some further clarity.

What I did read at 4am was a descriptor of the main issues non-eos have, with airways inflammation, cold and and pollution (for me especially the indoor variety) is great because so far it just sums it up. It wasn’t many years since I could toast bread without issues, and I grew up very far north where winters could get well below minus 20. Apart from a cold nose I managed that like everyone else, but now I would be such a wuzz!

[mylungshateme]

I don't really have much experience of AN to be honest at my old surgery it was the practice nurse she just used to complete a tick box. However when I used to rock up gasping for air the receptionist and her were Brill they'd just sit me down do back to back nebs questions later!

My new surgery - moved in lockdown never met them, so don't know.

Resp nurses at hospital always seemed good if I leave a message they call back that day or first thing next morn, but it's always increase pred add in abx.

So bit more reluctant to call them these days. Although my plan now is if pf 75% for 48hrs gp to send to HOT clinic that day instead of pred. But always felt supported by them over the phone and on admission. 😁😁💫. X

[Wheezycat]

My t I got about a month ago stated I was at a pf that I have never experienced. I would be chuffed beyond belief if I could manage that. Also that I should myself increase my inhalers, though it is contraindicated. So the review was really needed to sort it, but if I had got the ‘wrong’ one it might just have been rubber stamped leaving me unhappy and unsure where to go next.

[cliffhopper]

My hospital respiratory nurse is fantastic, can't say the same about the ones at my surgery though. I'm loving e-consult, I did it a few weeks ago for an asthma flare, and it came back with an instruction to ring for an urgent appointment. I got a no questions asked call-back from the GP and a same day appointment with a brilliant GP (like hen's teeth in my practice), who gave me antibiotics and more steroids without carrying on as if I was going to sell them to children. Long may it last !!!

[Wheezycat in reply to cliffhopper]

I must admit I like face to face, but I rather have a good phone one than a bad face to face any day!