Making a summary of your asthma to use in A&E/with paramedics: what these are and why they can help

[Lysistrata]

Hi all,

It's come up a couple of times recently that people have had less than ideal experiences with emergency care for asthma. I thought I'd post something about the summary I created and use when I need to go to A&E, which I know other 'regulars' have also found helpful. EmmaF91 has made a template similar to mine that she'll send you if you ask - here's the post about it: healthunlocked.com/asthmalu...

But I thought I'd also put on an updated post about what this is and why I use one. This is a long one, but I wanted to get the background in!

I've personally had many hospital admissions and while some have been straightforward and I've been treated quickly by people who 'get it', at other times I have really struggled. This is not helped by the fact that I don't present typically. I do not wheeze (but I can be struggling to move air at all). My sats tend to look ok (though the ABG can tell another story). My peak flow is high at its best and doesn't tend to drop neatly in line with guidelines. I don't look like their expectation of an asthmatic, and that can lead to problems.

Personally I don't get anxious about the actual breathing side, but wow it is much less stressful having them take me seriously, and not have to plead for treatment and make them understand I'm not just anxious, and yes I do have asthma even if it isn't textbook. All when I can't talk properly and my energy is needed for breathing.

I originally created my summary just because I found it hard to answer the million questions they need to ask, when I can't talk properly! But then found it actually helped them to accept that my presentation was not typical, but was still asthma - I often had positive feedback from A&E staff and some medics from the ward about how useful they found it. This problem was noted by the asthma nurses in one London trust and they created an official 'passport' for people to use. I had one of those, but I preferred to create my own in the end as it is easier to update and to tailor to me specifically. I often adjust it based on comments/how it's received eg what did they find helpful, did anything lead to misunderstandings, was there anything they focused on that wasn't on there?

Although it's helped, it's not perfect, and if they're really stubborn they won't look at it or will assume anything a patient writes is useless and wasting their time (I've had that attitude at times). But I've found more often than not it can be helpful. I once had a doctor nearly send me home from A&E before an admission where I landed in HDU! She was very conventional and peak flow focused, but just open-minded enough to read my summary. In the end she found she couldn't ignore where I said that I often responded initially and then dropped again worse. Without that I would have been going home, as my peak flow wasn't too bad and it seemed to be all she cared about to start with. Another time, it was passed from person to person in A&E, copies were made and they were all told as I was handed over that 'she doesn't wheeze with her asthma, bear that in mind'.

It's formatted like my CV aka bullets. I keep it to 2 sides, and it's printed, partly because my handwriting is awful and partly because it looks more official and that helps them take it seriously. I now hand it over very early (paramedics or triage nurse), and keep extra copies on me as it can vanish.

It includes:

- basic details about me and my asthma, name, DOB, GP.

-Previous admissions in the last year, my best peak flow, the fact I'm under a severe asthma clinic, no intubation/ITU but yes to HDU, the fact that asthma is proven, my adrenal insufficiency when I had it

-summary of my typical presentation, including the fact that I don't typically wheeze, my peak flow is high and may be over 50% predicted, and that I may improve a little with nebs then drop. I will happily use bold and other highlighters for key points

- At the bottom of the first page - NOT the top, I will list all my medication. I don't do it at the top because I want them to look at the rest of it, not look at the meds and ignore the rest.

- 2nd page has 'what's previously worked in attacks', triggers, and when discharge is usually fine for me (NB the ward doctors tend to ignore the document, so it's not that useful beyond A&E sadly - it would be if they read it though!) I also included a section on other conditions and what I do for a living, only because they always ask me that when I can't talk and my job requires explanation! I'm very very careful here to make it clear that I'm *not* demanding anything and it's up to them; this is just my experience. Generally I find if they're willing to listen to patients, they're more than happy for patients to let them know what works for them, but I want to make it clear I am not demanding specific treatments.

- At the bottom is a section with blanks that I will write on for every attack - it says when the symptoms started, what I think triggered them, what I've done at home

Hope this is helpful! Feel free to ask me any questions, though I don't have a template version of mine.

I will just add that personally I have found my actual asthma consultants have not been receptive to it, but I've not been especially lucky on that side of things, and I've noticed more instances than there should be of them second-guessing decisions made by ED that they were not present for and don't have context/facts for.

I'm saying this because I don't want anyone to be put off using this kind of document if their consultant is not keen. If they engage with it, and make helpful suggestions or put a useful plan in place for you, great! If not - you're the one having the attack, they're not usually there for the acute end. And it isn't, as one consultant charmingly suggested to me, about 'demanding unnecessary treatment and getting what you want' - it's just a guide to you and your history, and it is up to staff to decide how to use it in the moment.

[Hidden]

oh gosh this sounds like me. Id defo like to do this. You cant talk when seein these drs can you tgen some are horrid n dismiss what ur tryin to say discharge u cos peak flows good to end up back in hospital again. Madness. This us great idea x

[Gareth57]

I am surprised and dismayed that the medical profession can at times be so blinkered and dismissive, I have always been of the opinion that no matter what your chosen vocation is, and no matter what level you have achieved, you can always learn something new from someone else. I think this is a great example of something that should be almost mandatory and which should be welcomed by doctors if not encouraged and put together with their help.

[Lysistrata Administrator Community Ambassador in reply to Gareth57]

To be fair I would say the majority of them do welcome it! I definitely agree that I would like to see it become more widespread though, and I wish everyone had a version that they could create with a doctor or asthma nurse but ultimately reflects their own experience.

Initially I wasn't even thinking about being dismissed, I just didn't want to have to talk a lot when I couldn't really do it without a lot of effort.

[Itswonderful]

thank you very much for sharing this with us. It is terrible being asked a thousand questions when you can’t catch a breath. I had one very frustrated junior doctor saying repeatedly “she won’t talk!” He was quite angry with me. I kept signaling for a pen and paper but he completely missed it in his agitation. 🙁

[Lysistrata Administrator Community Ambassador in reply to Itswonderful]

ugh!! That's awful. I tried to show my summary to a registrar on my phone once and she refused to look at it and said very slowly and loudly 'why don't you want to talk to me?' as if she thought I had some kind of cognitive disability. Even if I had it would have been very inappropriate!! Then she said 'but you're not wheezing! So everything is fine, isn't it?

I managed to say not all asthmatics do.

'Yes but most of them do don't they?

I have to say she was one of the worst ever and most of them will at least look at this summary and find it helpful.

[Itswonderful in reply to Lysistrata]

oh that’s just terrible! Even a member of the general public with no medical knowledge would understand that you have to be able to breathe to be able to talk. It is frightening really that an intelligent person can become a doctor and have no common sense whatsoever.

[Lysistrata Administrator Community Ambassador in reply to Itswonderful]

i suppose in her head I didn't actually have any trouble breathing - because I didn't have a wheeze. So I must just have some kind of 'mental problem. I think she could have done with training on that side too!

[Itswonderful in reply to Lysistrata]

yes. Though still helpful.

[Oldandgray in reply to Lysistrata]

I have never wheezed and my blood gases will be around 94% but the pain in my rib muscles as they try to get oxygen in is terrible. As my cough is also dry I’m told I have acid reflux not asthma. Funnily enough a big but short course if prednisolone works

[Lysistrata Administrator Community Ambassador in reply to Oldandgray]

Huh, asthma cough is typically dry, not sure what they're expecting?? I've had some odd reactions to coughing. I wouldn't say I have cough variant asthma as such, it's just one symptom of asthma. Like wheeze. But I've been told if I don't wheeze it must be cough variant, even if I am also short of breath and tight chested. And at times it seems as if doctors are unaware that a dry cough is related to asthma at all. A senior respiratory doctor once suggested cough syrup for my cough as he seemed unaware it was asthma. He looked surprised when I said that salbutamol and if especially bad, atrovent and magnesium, tended to fix it.

Also, oxygen levels of 94% aren't ideal for asthma, though not yet at the 'omg' level which is 92% and under . I suspect asthma and COPD can get smooshed together at times and they're not necessarily the same eg an 'ok' sats level for COPD tends to be in the low 90s which is not ok for asthma.

[CANINE12]

This is so useful, I have a credit card holder where I've put pieces of paper with relevant details similar to Lysyeria's. However I think I'll do sheets of paper so I don't loose the other one. Paramedics have found it very helpful especially when I can't talk.

I sometimes don't wheeze depending on the severity of the attack and what's triggered it. My peak flow doesn't always drop. I'll start another post on that.

[Blue-Breeze]

Great advice. I used to have my full list of here is me! Our local hospital is bursting at the seams and no one has time. Sad but true. Potted history of this attack with my prescription x how many resus admittance, asthma consultants name, PF and normal. ETC I never get to red zone I'm always in a lot of trouble by then.

Being a non wheezer is hard work! However I present with fast pulse due to struggling for air. I've been told its panic once I've shown them the NHS screen shot on asthma fast pulse!

[Homely2 Administrator]

Great idea.

The first time I called an ambulance, the paramedic said she wasn't allowed to do a nebuliser unless I could talk to her and provide all the relevant info. This idea would get around this, so thank you.