So frustrated...

[Melanie1989]

So after not getting anywhere with my consultant I have transferred trusts and feel like I am out of the frying pan into the fire... The asthma nurse has sent me an asthma action plan with the average peakflow for my age and height instead of personal best, and says I am having an asthma attack if my peak flow dips below 230... I should also start steroids at 270. If I waited that long I would be dead.. She didn't ask me my personal symptoms at all, in fact I had no input whatsoever. The only thing she did was change my fostair to relvar ellipta as she claims it is stronger, no idea if that is true.. I am at the point of completely cutting off secondary care as I see no point in it.

I researched the national review of asthma deaths for uni work and 45% of asthmatics die without seeking support, I am beginning to see why..

Sorry for the rant, I am just so frustrated 😞

[EmmaF91 Community Ambassador]

Ugh. My advice is to ‘scale up’ your plan. So if they’ve used 50% predicted for your red zone, make that 50% of best etc etc. And try calling the AN line and flagging this as a problem! There are some fab nurses out there who understand us with really high bests, and others who refuse to listen...

Ps - don’t forget plans come with symptoms levels when to start things. So if you’re at that level of symptoms you don’t have to have the PF to match!

[Melanie1989 in reply to EmmaF91]

Well my g.p agrees with the A.N and thinks she is being over cautious! I guess it's just me being unreasonable then 😂 Think I am just frustrated at not having any input, and to rub salt in the wound the g.p reiterated my unicorn status by declaring I don't present like an asthmatic 🙄

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

Ugh. Overcautious in the sense of giving steroids too soon/saying it's an attack too high?

As Emma says it's not just about PF but also symptoms which it sounds like they haven't considered. My best is significantly different from my predicted but even using the best I can't just wait for my PF to drop! It just doesn't happen (or it does but sticks in yellow for ages instead of dropping to red with attack) and I can be over 50% and having a severe attack. I think you've said yours doesn't drop neatly too? In which case they need to factor that in and not go entirely on PF.

The joys of being a unicorn 🦄 I hope you get someone to listen at some point. Do you get a cons appt with the new place or just AN?!

[Melanie1989 in reply to Lysistrata]

He said the A.N has advised steroids to soon my peak flow should be lower, he said start them when my peakflow is at 50% of my best. My peakflow will hold for quite a while then crash, which is not ideal! I just can't believe clinicians are still using predicted.

Luckily I should have an appointment with EmmaF91 fab consultant, so I'm just holding out for then!

[EmmaF91 Community Ambassador in reply to Melanie1989]

Hmmm

Typically you should start steroids in yellow zone, not red (esp for us lot who don’t have many options). The idea of steroids is to prevent it escalating into attack, not waiting until the attack is happening...

[Melanie1989 in reply to EmmaF91]

Exactly what I thought 🙄

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

Ugh yes and is he saying to ignore everything but peak flow?! That's not sensible or safe advice, even if I have had an asthma cons tell me same (no medical help above 50% best, terrible advice but he refused to believe anyone could really be bad with peak flow over 50%).

Hope you get that appt through soon - I have heard great things about her! Can you see a different GP meanwhile if needed?

Like Emma said the idea of steroids for those who respond is to stop an attack if possible not wait for it.

[Melanie1989 in reply to Lysistrata]

My Dr's are quite pushy when it comes to seeing your own g.p but I can push for a different one. I just keep thinking it must be me as surely I can't be that unlucky to get all this bad advice!

The ironic thing is he always insists i get help early, I really don't know what he wants me to do 😂 Thing is it just puts me off seeking help when I need it as I worry I'm just not bad enough..

Thank you both though, it is such a life saver talking to people who understand

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

Hmm that seems silly making you see the named one - mine has always said you have to have a named one but it doesn't mean you have to see them, it's just an admin requirement!

I know what you mean about that 'it must be me as no one can be that unlucky'. I think being a unicorn makes it worse and also exposes bad advice when it occurs. If we were more normal then generic advice and being obsessed with wheeze wouldn't be such an issue because it would probably still work ok.

I have certainly found my bad experiences make me question myself a lot - like you say there's the feeling you have to be 'bad enough', but I would never advise someone else to wait it out and get worse. It's also made me slower to really take on board when advice is bad and it isn't just my perspective. As a result I have in the past often stayed and stayed with cons who were advising me badly because I thought it was me, not them so why would seeing someone else change it?

[Melanie1989 in reply to Lysistrata]

Exactly how I feel! It kind of just gets in your head. It doesn't matter how much knowledge i have I still assume I must be wrong! I spoke to AUK today which has helped massively, and reassured me that I'm not crazy 😜