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respiratory medicine

IncognitoC profile image
19 Replies

I have an appointment at the hospital for respiratory medicine consultation.

They have requested that I bring- peak flow diary, all medication and my asthma management plan. I have never had a peak flow diary or asthma management plan, should I have been given these by my doctor?

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IncognitoC profile image
IncognitoC
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19 Replies
Troilus profile image
Troilus

Hi Incognito. They say everyone should have an asthma action plan, but if you haven’t been given one, then you haven’t been given one. You won’t be the first person to see a consultant that hasn’t been given one so don’t worry about that one.

As for peak flow graph/chart you can start to do one now and again just say nobody had told you to keep a record and that you knew nothing about it until you got your appointment letter, which is when you started doing it.

Medics (especially hospital clinics) like peak flow charts - it allows them to monitor your response to medication and to any alterations they make. On a personal level I still keep one even though my respiratory clinics are now yearly and mostly by phone because it gives me early warning of a downhill slide allowing me to intervene before I become noticeably symptomatic.

This is a link to a downloadable peak flow diary that you can print off.

shop.asthmaandlung.org.uk/c...

Alternatively there are apps you can get.

IncognitoC profile image
IncognitoC in reply toTroilus

Thank you for your reply, I will have to get a peak flow meter etc. I will of course speak with the hospital clinician about setting up an action plan and getting a meter. I have one medication for asthma that I take twice daily and as and when I need during the day. The appointment is to see what medication I need to take etc.

thanks again for your reply

Mandevilla profile image
Mandevilla in reply toIncognitoC

I'd been diagnosed with asthma for over a year before I got an action plan, so I wouldn't worry! You can print one out and fill it in yourself, but I'd probably just go to the appointment and say you haven't been given one - hopefully they might give you one there.

I agree it would be worth recording your peak flow between now and the appointment though. Everyone is different, so it really helps to know what is normal for you. Especially if your peak flow is higher than average because if they are just comparing your record to the 'standard' charts, they could think you are fine when you are actually producing a very low reading.

IncognitoC profile image
IncognitoC in reply toMandevilla

I was diagnosed with asthma 41 years ago so it’s not actually that new to me. Action plans are a relatively new concept for me though.

As previously stated I don’t have a peak flow meter but I might get one during my appointment with the hospital.

Thank you for your reply

Mandevilla profile image
Mandevilla in reply toIncognitoC

It seems a bit odd that they are wanting peak flow records for the first time in 41 years. Better late than never I suppose! They can always give you a meter at the hospital if having a record is so important for them after all these years.

Blue-Breeze profile image
Blue-Breeze in reply toIncognitoC

I did not have a action plan. That was done at the hospital. I request a replacement peakflow from my GP. Speak to them, take your letter. Hopefully they will oblige. I use an app. My consultant is happy to view my phone.

Good luck

SuziElley profile image
SuziElley in reply toIncognitoC

You can download an asthma action plan from the same site.

asthmaandlung.org.uk/

selyab profile image
selyab

Yes

IncognitoC profile image
IncognitoC

thanks for sharing your advice everyone

peege profile image
peege

Just to add, it may be simpler to buy a peak flow meter rather than wait if your surgery is slow to respond. Mine is mean, so I bought one from the chemist (about £8). If you or a friend or relative has Amazon Prime ask them to get you one, it's usually next day delivery. If no luck with amazon prime you'll have to pay the postage.

There might be an Action Plan shown somewhere on here for an example 🤔

IncognitoC profile image
IncognitoC in reply topeege

I think I am going to just tell the hospital that I don’t have the necessary information that they have requested. If I have never been provided with the things that I need and I have also not been advised that I should have certain things then I can’t be expected to provide them.

Homely2 profile image
Homely2Administrator

Different consultants approach asthma differently.

My present consultant has no interest in peak flow diaries or asthma plans. He is just interested in feno, spirometry tests and endlessly trying to prove I have high eosinophil levels, which I do not.

My previous hospital was really keen on peak flow diaries and altering my asthma plan to minimise my peak flow variability., while having little interest in full blown spirometry.

So different consultants have widely different approaches.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply toHomely2

He is just interested in feno, spirometry tests and endlessly trying to prove I have high eosinophil levels, which I do not.

We seem to have the same consultant! I used to keep peak flow diaries because while the number itself isn't that helpful for me, the response to medication and variability isn't.

My consultant could not be less interested. He even told me he doesn't trust what I do at home because he doesn't trust my technique - even though several members of the team have checked my peak flow technique and said it is fine. Apparently it only counts if he sees it and when he did he didn't approve (I got the same number in hospital with his and my version, well below discharge level but apparently only FENO matters).

Incognito - this doesn't mean yours will be like that, and I agree that you can't be expected to provide things they have only just asked for. However, I agree with others it could be helpful to know your personal best beforehand by checking and to let them know what it is, especially if it's well above or below the predicted. Like Mandevilla, mine is way above predicted and I have to say that a lot!

Homely2 profile image
Homely2Administrator in reply toLysistrata

My consultant when I last say him gave me a blood test form for eosoniphils, I am ameant when I have a blood test to rush into hospital, to check my eosinophils. These are tested whenever I end up in a and E and are always lowish.

I told him that I do not have eosoniphilic type asthma and when I have a proper asthma attack I cannot go anywhere, let alone drive to a hospital and walk to the blood clinic. He listens, nods, then repeats himself.

Not only will he not use readings from my previous hospital, he even when I had my spirometry tests done at his hospitals respiratory clinic, when all the results were red and bad, put me on prensidone for a week, and then had all the tests redone , inside his department rather than at the nurse led respiratory clinic. Given prensidone had done it's job these gave him the result that his medicines were working, so he was happy.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply toHomely2

Wow sounds exactly like mine! I never have any eosinophils most of the time, even not on pred. Which doesn't work for me now, if it ever did. He helped me get off it but is still utterly obsessed with FENO and eosinophils.

I don't think they're all like this though...

d2read profile image
d2read

Just a note to everyone:

Terminology like “asthma action plan” was borrowed from management consulting. It’s a relatively new term everywhere.

I spent years as a management consultant and remember clearly when medical schools and medical professional organizations decided to use tools like asthma action plans and peak flow charts to monitor and catch incipient attacks in asthma patients (and for other chronic diseases).

The fact that you’ve never been give one in writing doesn’t mean you actually haven’t been given one. For example, if you get asthma flares on a fairly regular basis, has your physician (in whatever country) discussed what symptoms should alert you that you might be starting a new attack and what to do about it. THAT is an asthma action plan.

I’m from the US, was diagnosed with severe asthma 67 years ago, and although I now technically still have eosinophilic asthma and hypereosinophilic syndrome (HES). I am now in complete remission from the HES, and haven’t had an asthma attack of any kind in almost 20 months — the longest stretch of my life. Still don’t have a written AAP or peak-flow chart, but encourage everyone , especially those who are relatively new to preventing and treating their asthma, to get them and learn to use them.

Mandevilla profile image
Mandevilla in reply tod2read

I know that terminology is changing all the time and not having a 'peak flow diary' doesn't mean you don't monitor peak flow, but it seems that IncognitoC has never been given the means of checking peak flow! I know peak flow is not a helpful indicator of issues for everyone, but I do think everyone should at least be given the means of checking it and knowing what is 'normal' for them. (I'm possibly slightly biased since my unusually high peak flow was one of the reasons my asthma diagnosis was delayed so long - because when my peak flow is reaching worryingly low levels, I show as 'slightly below average but nothing to worry about' on the standard charts!)

d2read profile image
d2read

Those are excellent points, and part of the reason I always campaign for people to educate themselves about potential diagnoses, and the tools and treatments used in different situations and countries.

For example, in the US and much of Western Europe, there is a bias toward the use of expensive diagnostic, monitoring and treatment protocols. Which isn’t to say that those aren’t very valuable. But there can be other tools available at much less cost.

For example, peak flow meters are frequently so inexpensive that they are often given away in patient-awareness packets, by the case to physicians who may purchase more expensive tests and tools.

And yet, when used correctly, peak flow meters are some of the fastest, most easily understood tests that even children can understand and use to modify medication and behavior and reduce the severity or occurrence of an asthma attack.

I’ll never forget how liberating it felt when my doctor (decades before peak flows were developed) taught me how to assess my lung functioning and the possibility of an asthma attack. It was the most empowering thing I ever learned.

And it wasn’t anything close to as precise and accurate as a peak flow meter.

Birthday60 profile image
Birthday60

Do you regularly measure your peak flow? You can get a gadget on line or through your GP - I put mine on my iPhone in the health app which kindly graphs it - you can download or email it to your surgery. Otherwise just a piece of paper will do.

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