So I was chatting with EmmaF91 and Lysistrata from here last night and we were saying how it would be quite helpful to have something small to keep on us to alert people to your asthma/treatment that works etc.
I know a lot of us either have our own or Emma’s famous template for a&e trips but sometimes it isn’t practical to have something that’s a couple of pages long on you at all times - like the other day I had a very sudden attack on my way to the GP which was completely unexpected so I didn’t have anything of the sort on me.
So last night I tried to put together an asthma “business card” kind of thing. It’s 4 business cards in size (so folds down to the size of 1) and has sections for your clinical history, effective emergency treatment, typical symptoms, normal peak flow, what to do if you’re struggling to maintain in hospital, regular medications, allergies, other conditions and what safe discharge is for you! Mainly using tick boxes etc.
I just thought it might be a good idea because it’s something small I can keep in my purse or phone case at all times, just in case I’m ever caught out with an unexpected attack or my phone runs out of charge (because I’ve got info on there too).
Thanks to EmmaF91 and Lysistrata for giving me a load of feedback on the first version 😉
If anyone wants to have a look to either use it or help me improve it please send me a PM! I’ve done separate ones for “asthma” and “severe asthma”.
Also if you can think of any other things that could be included let me know!
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Js706
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Definitely endorsing this 😉 (esp as it’s something we’ve discussed between us for a while... Js706 actually put our talks/whinges/moans into action!). Whilst I’m hoping not to have to use mine (as always 😉) it looks useful and imo has most (if not all) of the relevant info people need is you’re ‘caught short’ without your bigger form!
Agree with all of the above - one thing I like is that it has different sections for emergency and ongoing treatment. I find A and E can be good with my version of the summary but the medics either ignore or don't look at it/someone has stolen it before I see them. And yes it's useful to have a pocket guide...short of getting a tattoo which says not all asthma wheezes and it isn't COPD.
Or the medics don’t know when to escalate treatment in a severe asthmatic who isn’t stable enough to leave but also isn’t bad enough for ICU... had many stays prolonged due to this and the ‘arguements’ I have to give to get treatment they deem only appropriate for ICU but is what I need to stabilise!
I know what you mean Emma! Have also had it the other way around where ICU docs keen to take me back with them but I know that if they just got on and gave me the specific meds that I know work for me then ICU wouldn’t be needed! Have had quite a battle over this on a few occasions. They always seem shocked that by following my guidance it always works. 🤦🏼♀️🤷🏼♀️🤔🥴 Pam x
Well done to all involved. This sort of innovation is just what’s needed to keep us safe 👍🏻🎉 thank you. I will definitely pm for a copy please. The full EmmaF91 version, I always keep 2 folded copies in my handbag so have them with me at all times - 2 copies as a doc always wanders off with the first copy and then comes back with 20 questions! 🤦🏼♀️🤷🏼♀️ The mini version sounds an excellent adjunct 🙌🏻. Thank you all and keep the innovation coming 🤞🏻🤞🏻 x
Have just completed this excellent business card sized version thanks. Have added on my NHS number as don’t always know which A&E I will end up in 😉😔 and the phone number of my specialist hospital.
Printed off a few copies and tucked one of them behind my phone in the phone case. When I go out for a walk I don’t always take my handbag (have put one in purse etc) but I don’t go anywhere without my phone so at least I know I will always have that with me 👍🏻👏🏻 many thanks again to all involved. Pam x
Wow...this is pretty brilliant! I wonder if Asthma UK would look to make this an official tool for download on their website? That, along with Emma91’s template?
I think I just need one that simply says “PATIENT DOES NOT WHEEZE” 🤦🏽♀️
For anyone like me that I send it to who is on a long list of regular meds, including non asthma ones. In the regular meds section I just ticked the box for other and wrote PTO - then listed the rest on the other side
It's also worth joining an organisation called MEDIC ALERT - it's big, well-established and well-respected by the medical profession themselves - which holds a central record of all your health problems, allergies etc, and is flagged up by an item of jewellery that you wear - either a silver medallion round your neck, or a bracelet, items also engraved with primary info. All the information recorded there is what *you* write, not what the medics say, so if you want to put "coughing, not wheezing asthmatic", you can! Does cost around £75 annually iirc, but I consider it worth it.
I do have a bracelet, but I got it more because I got adrenal insufficiency from all the pred, and then they found I have weird asthma which doesn't respond to pred but still am steroid-dependent on a small dose of oral hydrocortisone. Should have got it when steroid-dependent for asthma really - would be the same result if i were injured and unable to tell them.
I have a bracelet I bought cheaply from Amazon which looks like a silver bangle (stainless steel) but has the Med Alert red emblem - I'm not a wristband person and this works for me (and can be used easily with a computer mouse if you work a lot at a desk - some bracelets are annoying for that). You can get engraving free so I have my name and DOB on one side and then says see phone, where I have a lock screen app with more info. Reverse then says I am steroid dependent/AI with severe asthma. Company is called VNOX and has a lot of styles and colours.
Oddly enough I never thought of getting one just for asthma - nothing wrong with doing that, think I just had too many cons telling me I was fine and it got into my head that precautions would be excessive. I do love things like Js706's new card, and my own version of EmmaF91's summary (had one already which has worked well, but planning to use some bits of hers I like), because I find especially with no wheeze and weird asthma, I have to really SPELL IT OUT SLOWLY at times - and even the good drs need a history when I can't talk well!
Today I used my summary as not yet been able to print the new wallet guide. One dr who I have met before and is a right arrogant PITA/other ruder word didn't want to look, but clearly remembered me as the PITA she met last year with the piece of paper, who disagrees with her on trivial things like the contents of asthma guidelines. Yes, asthma DOES increase your heart rate independently of meds! No, I don't really care that you're an ED registrar and I'm a patient. That just makes it worse that I know the guidelines better - at least look them up rather than pretending and getting it wrong, even if you do have a lot to remember.
The other dr I saw read it, wrote stuff down and then forgot it all and defaulted to her normal mode of not knowing very much about asthma but having a process to follow. However, between them I still managed to get some B2B nebs including atro and some IV mag - suspect none would be forthcoming without my thrusting this summary at them. Let's gloss over all the things they did wrong, as it would be far worse without the paper!
Feel exactly the same Lysistrata, considered a med i.d, but dr's have made me feel im not "bad enough". I have found the summary paper helpful, but only because it says severe asthma on the heading 🙄
So the card got a test drive tonight 😂 been drifting down for a few days and finally had to give in and head to A&E.
Thankfully they were FAB! Straight round to resus and was on a neb and magnesium and hydrocortisone were being drawn up before the Dr had arrived! So have escaped admission after a period of observation (plus 2 weeks of antibiotics as my white cells were sky high! 🙄)
The Dr loved the card though, thought it was really useful - took a photocopy and my mum heard him raving about it to the other staff members whole she was still in the corridor waiting for me to be stabilised 😂
Sorry to hear you ended up in A&E but delighted at the response when you were there. Just goes to show what can be done if they act on the info. Best wishes for a speedy recovery 🤞🏻👍🏻 x
Thank you! Hope you’re doing alright at the moment too 😊
It was just so refreshing to have no battles at all, got into triage and the nurse said “well your oxygen is ok now but everything else shows your body is really struggling so let’s not wait for that to go!”
And the dr kept popping over to check I was happy with what he was prescribing and did I need anything else written up 😂
They were so efficient getting treatment in they still managed to observe me for nearly 3 hours post magnesium to check I was ok! And did want to admit me overnight (but I was less keen on that plan by that point 😜)
If only you could guarantee that sort of result every time! I have to say, since starting to use the template and now the card, the positive as opposed to traumatic experiences pendulum appears to be turning 👍🏻🙌🏻 long may that continue. Pam x
Certainly won’t go wrong! I agree, it is the layout and clarity of the information that is key. I too get very positive comments from clinicians etc 👍🏻 x
Yes I formatted my summary like my CV which I knew worked well in getting me interviews, and the summary seems to be very well received partly for that reason (refusal to read it or not reading it properly is a sensitive and specific test for a crap Dr).
Have yet to use the card but will road test it when I do! Glad you had a great experience Js706
Basically, people are lazy and like it when you make it easy for them 😉
LysistrataAdministratorCommunity Ambassador in reply to Js706
Agreed! I much prefer this to the approach of 'I'm going to make my life harder because it's easier to stay ignorant and your summary would force me to reconsider...'. not that anyone we have met does this of course...
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