action plans - what do they say?

I don't have any form of action plan so whenever I have asthma trouble I have to 'wing it' and unfortunately I'm not very good at it! I'm a bit like a wounded animal in that the more trouble in in, the more I try to hide it! It's not deliberate, it's just I don't like being Centre of attention or having people worried about me. Added to the fact that my lungs don't behave textbook style!

I think last night/this morning I really should have seeked help there and then rather than riding it out to see the Gp today. I didn't want to make a fuss but I was scared and was really struggling.

So my question is, those who have action plans, what do they say? I know they're personalised to you, but just for indication. Like when should you see Gp, when should you call 999 etc. Any advice you can give me would help give me more confidence.

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I think action plans are really important. Particularly for those whose symptoms vary a lot or who are prone to exacerbations. Last night I was talking about this with my partner who's had asthma all his life and is very settled with his treatment and tends to not suffer much. He said he was never offered an action plan and couldn't see the use. Well, I was diagnosed a year and a bit ago and have had a rotten time pretty much since. To complicate matters, peak flows are not very useful for me and tend not not be good indicatives of how bad my asthma is. So I was complaining I haven't been given one yet. Currently waiting for an appointment with the specialist asthma nuse at the hospital after seeing a consultant.

There is a standard one here on the AUK website that you can have a look at and fill out. But those only really work for people with a variable peak flow. In any case, they are better filled out with the help of a health professional, I think, but you can fill one of those out to get going with in the meantime!

Hope you start feeling better soon.

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Hey butterfly, you should be able to get an action plan from your gp/asthma nurse. My asthma nurse bases it on the AUK plans, but I've gone back to using my old asthma nurses action plan as it works best for me! My plan literally says that if my pf is consistently below 75% for 24 hours then I need to up the pred (that way we generally avoid flares leading into attacks which make me very poorly for a very long time!) and if my pf drops below 50% I need to neb, if it then doesn't go above 50% or drops again within 2 hours then I need to neb again and go to A&E. It seems that by doing that I avoid the drama of scary places within the hospital and get better much quicker.

I'm lucky though because my pf does generally match how I'm feeling. Or does even if I don't realise it. Last week a few days before my gp admitted me, my pf was really low, but I felt ok at the time ... a couple of days later I'd been sent in because I'd taken a turn for the worse, so it definitely does serve as an indicator for me!

They can be based on symptoms and reliever usage too if they are the best thing to go by. Also if filled out by your gp then they could put about the not wheezing thing because then emergency drs may sit up and listen and not leave you feeling like you did a bit back. Emergency doctors are good though, don't get me wrong, as it must be hard when they see people who they have never seen before and don't have notes in front of them. I tend to only see one gp who now knows me really well, if they aren't there I won't go to the gp as there isn't really much point in it as they don't know me.

xxx

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Hi Butterfly,

Sorry to hear your asthma has not been good again. After a year long battle, I finally managed to get an asthma plan a few months ago when I saw a respiratory nurse (my GP and cons were reluctant to give me one because of my atypical asthma but I think this is even more of a reason for one). Like you I also used to wing it and think I did quite well but wanted the confidence that I was doing the right thing at the right time.

We started one based on AUK plan but through discussion it became apparent this needed a lot of adjustments. Mine goes through different stages based on peak flow, frequency/severity of symptoms and reliever use.

1) green zone - as AUK

2) yellow - add Flixotide as extra ICS

3) yellow - start pred

4) red - Urgent GP or OOH appointment

5) red - A&E/999

It took ages and could not be done in a normal appointment but has been really valuable as I can add the extra steroids and contact usual GP rather than seeing any GP who does not no me or is fixated on hearing a wheeze. I believe this has helped me to manage a recent flare before it got really bad. I did have to go to OOH a few weeks a go and being able to say I have come because my asthma plan says so made it so much easier even though there was no wheeze. Although I have noticed a real change in attitude from OOH recently, I don't know whether it is because I am there a lot or whether I have got better at explaining symptoms. They also appear to have access to some hospital records as one doc commented on a letter from my GP to cons and said your SATs are fine but then your GP wrote that they often are.

I would really fight for an action plan as the whole process was well worth it. We also went through all the meds I take which hasn't been done for a while.

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Sorry to hear you're struggling again Butterfly

I think an action plan would be really helpful but am beginning to think they're like unicorns! I think my GP would prefer specialist input on it though she will advise and keeps an eye on me (well she has to help with the pred reduction as cons won't, just says get off it). I have asked cons but he will only agree to an action plan that is entirely PF based and since my PF is not the most reliable of guides (and he ought to know that, he has a copy of a discharge letter that says I was hypoxic with a PF of 400 which is about 66%, so not brilliant but above where he thinks I should be getting help), this is not a huge amount of use; I need one that actually reflects how I present. Bizerrely, he has written in a letter that he acknowledges I am a difficult asthmatic who does not wheeze, yet seemed to question me presenting at OOH/A&E and not wheezing?!

Oops sorry for a bit of a rant but as another 'atypical' asthmatic I am finding this PF and wheeze fixation a bit frustrating and would definitely like to have an action plan so I feel more secure getting help.Having said that, I have generally found A&E pretty good on the whole. I've not been to OOH for a while purely due to logistics (walk ins seem to be closed before I need them and 111 now just does the redirect thing and gives me an ambo because I can't talk to them properly) but they can be variable - where I used to live they were sometimes amazing and sometimes made me want to hit my head on something, though I have got more assertive than I used to be and will be that annoying patient who insists on trying a neb even when they're saying it won't help and I'm fine and should see what cons says etc.

One thing I have done - mainly because I was frustrated trying to answer their questions (and I know they have to ask them) when I can't really talk too well and also having to explain myself is write out my own summary with all my details, GP name etc, medications, history, and how I present, including quote from cons about being a difficult asthmatic who doesn't wheeze (v useful even if he doesn't seem to always believe it!), that sats don't drop etc. So have put things like the fact that I tend to cough a lot but this is asthma not throat (they often say that and I know it's not as it's v closely linked to other asthma symptoms and asthma medication sorts it), what has worked for me before etc. I have been told by medical staff it's really useful and I think has actually changed their plan for me and made them take me more seriously because it explains things far better than I could when knackered and not talking well! I revise after every admission and have recently cleaned it up and made it easier to follow using bullet points etc as I know there were some bits that everyone found confusing (last time I got written down as being allergic to my allergy medication because of the way it's written! Had no idea that was even possible but apparently so...).

Anyway sorry to ramble and I hope you do get an action plan sorted but meanwhile writing your own summary would probably help - I worried they would roll their eyes and think I was a nutcase or anxious patient but most drs (and paramedics) genuinely seem to find it useful and it's better than waiting forever for me to say it hehe.

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Thanks guys, this had been really useful. I'll download one off this website, and write down a few ideas and then hopefully when I see the Gp in a month, I can start to create my own. I just find that a single appointment isn't much time for discussions like this.