thought i'd start the thread someone else asked for LOL. so here it is. what would you tell the Dr/Nurse/Cons/Para if you could?
Don't judge me on my appearance.
Not all asthmatics wheeze.
Just cause my PF is XXX doesn't mean I'm not struggling.
Keep going!
Geina x
Yes...I do know what I am talking about. I live with this every day..please take a moment and listen to what I am trying to tell you.
just cos my stats are fine doesnt mean im not struggling
hehe thanks Geina!
This is for the 'bad' ones - by no means saying they're all like this:
No, I am not anxious. No, really, I'm not, and I'm not freaked out by being in hospital either. And I have been a lot more stressed than this and still breathing normally - my biggest source of stress right now is the fact that I can't breathe and you don't know why!
(for OOH) I'm here because NHS Direct/your colleague told me to come, not because this is my idea of a fun way to spend an evening.
How is it possible for you to tell me definitively that I'm fine on the basis of a 5-minute conversation?
Please can you spend a couple of minutes actually reading my notes and/or taking a history before you jump to conclusions. Especially since XXX spent time writing that letter/trying to keep you updated but you haven't bothered to actually read any of it.
Since I already told you that test would be normal because I have had it before and it was normal, the fact that it's still normal doesn't really tell you anything, even if you did have a good reason for double-checking.
Exactly!!!
Could I Please speak to an asthmatic dr...... They will understand exactly how I'm feeling !!!
Can I please have several attempts to do an arterial blood gas on you dr.... Honestly it wont hurt much !!!!
I am unique and not a text book, so stuff what you learnt at Medical School and listen to me, and there is no such thing as just a little scratch, told you my veins are crap so as requested please go and get someone who can do the job. I have done back to back nebs for the past hour, that is why I am here, they ain't working so please give me some IV Mag, please hear me when I say follow it with at least 24 hours of aminophylline or I will be seeing you at 2 am with the ""told you so face."" I have more experience at being a Brittle Asthmatic than you. Oh and by the way this a syringe driver with Bricanyl, and no you are bloody not taking it off me whilst I am an inpatient. And finally I have a reputation, you have been WARNED!
love them.
katina, my mum and sister are with you on the awkward veins. theirs just collapse as soon as a needle is waved near them.
Geina x
Maybe the most basic thing would be to suggest that they log into the forum on Asthma UK and spend a bit of time reading what life is really like for people with asthma. Maybe they would finally get the idea that one size does NOT fit all!
Yes, I know you can't hear any wheeze (cos I never do!) and yes again my chest will also sound clear.
well my chest will sound cloear cos i just had 30 puffs of sally waiting to be seen!!! yet i still cant breathe and chest is tite????
grrr...
x
To my former GP practice.
I changed GP practice because none of you ever read my notes cos if you had, you wouldn't keep asking when my last admission or even how many admissions, I have had for asthma. I have never had an admission for asthma. BTW Did you know for the last two years, you've been treating me for fairly advanced stage 4 asthma when my new asthma nurse says I'm only at stage 3 and has reduced meds accordingly.
And PS are you ever going to pass the medical records for myself and my husband over to our new practice. Their reception desk is but ten feet from your own.
Some random ones from me:
- If you must judge how I am from a quick sats check and listen to my chest (and without talking or listening to me), fine. BUT you need to run your surgery at 3am so you can see how I am at my worst.
- Don't assume you know how well / unwell I feel. You don't know, just accept it.
- I know those white tablets are cheaper but they make my stomach bad. Please don't insist on trying to persuade me that they are as good as the smarties. Research may show this but my experience doesn't.
So true about clear chest! Drives me up the wall - especially if they've spent about 2 seconds listening in one place. And yes, when you're not at your worst - my appts have usually been at my 'best' time of day!
Another one:
*Just because x diagnosis is statistically most likely does not mean that you can decide I have that the moment I tell you my symptoms, not really investigate any further and fit any evidence you do have into your 'answer'/approach everything as though you know the answer already. The diagnosis is meant to fit the evidence not vice versa, and as a doctor you really ought to know this basic scientific fact.
It would be great if some of them came on here occasionally and read this, wouldn't it? Though I might feel a bit bad as I do sometimes like to just sound off when I'm frustrated and have just had another encounter that's failed to provide any answers, and I know sometimes the problem is a) with me and my weird lungs and b) with the system not with any individual.
(If the ECG dept and on-call cardiac registrar when I did my treadmill test at the JR ever read this - you are all absolutely fantastic, an example of the NHS at its best and none of this is aimed at you).
Snowygirl, I'm with you on that one. They should ask how much meds we've taken etc! Seems a basic thing to question to me.
Please don't ever tell me that your chest getting tight and not responding to inhaler is ""just one of those things that happens to asthmatics"".
1. I know!
2. It doesnt mean I don't need treatment.
Agree with all the others who said that telling me my chest is clear, not wheezing and O2 Sats are fine isn't helpful:
1. I know!
2. I still can't breathe and that's why I came to see you!
3. Since I've just told you I've had between 10 and 20 lots of 2 puffs of ventolin today, that probably explains why my symptoms aren't that severe now, but from experience I know I need pred, can't you just prescribe me some?
Philomela this was Tuesday's OOH doc, not another one!
Glad you haven't had another encounter Spookymilo! I got lucky last time, got urgent appt with my own GP.
Really, what a stupid thing to say though 'oh, it's just one of those things that happens if you're asthmatic'? Umm yes, it is, but it doesn't mean you can just give up as a doctor and expect the patient to put up with it!
Yeah! Respiratory failure 'is one of those things that happens to asthmatics' too but it doesn't make it ok!!!!!!!!
Please use my known (and look it's there in the letter from my consultant - big clue that one...) best peak flow to assess whether by current PF is low or not. If you insist on going on percentage of predicted then yes I do seem okay, that's why we have a record of personal best.
Please follow the letter written by my consultant that's both in my notes and I've just given you rather than thinking you'll have a little play of your own. We've worked out what works for me and it'll save everyone a lot of time if you just follow it.
If you're trying to discharge me and I'm explaining that I know my symptoms and that I'm not stable and it's likely I'll deteriorate rapidly, try listening to me - I've been there several times before and it'll save us all a lot of time and expense if you don't have to re-admit me in a few hours.
Don't ask me repeatedly if I've been taking my medication if I've already told you I have but it's not working. Don't assume I'm at fault and try to make me feel guilty because my body isn't responding as the textbook says it should.
Have some access to some paper tape - I can't possibly be the only patient you've ever come across who's allergic to the plastic tape, and no, you can't just try a little because you're sure it'll be fine. I'm very attached to my skin, I'd like to keep it please.
Read my notes saying what I'm allergic to before trying to administer drugs to me - doesn't really give me much confidence in you when I have to stop you needle poised as you're about to give me something that would make me very ill because you assummed rather than read my notes.
If my GP has sent me to hospital it's generally for a good reason because she knows me, my medical history and how I can deteriorate - and she also knows I hate hospital so wouldn't send me for fun - so perhaps hospital docs, read what she's written and accept it. And if you think she's wrong for sending me, pick up the telephone and argue with her, don't argue with me and take out your frustration on me.
If a classic symptom of what I'm in for is confusion, don't get stroppy when I'm confused... D'Oh!
Don't make assumptions because I'm a student - telling me to drink less alcohol won't work when I don't drink, will it?
Don't assume that because I'm doing an advanced degree I know much about medicine. Please speak in laymans terms rather than giving detailed medical explanations. I want to know what's wrong and what you/I can do about it - I don't want a detailed description of cell structure, blood movement, muscle whatsits - I'll read what I'm interested in on that when I'm well, but right now I'm in no state to take it in and will probably miss the important things too because I'm not taking in what you're saying.
Don't make assumptions about my medical conditions and 'coping strategies' because of my family history - lots and lots of people have divorced parents, it doesn't screw you up and give you brittle asthma or any other medical condition, so don't you dare bring that in.
Try and write an accurate discharge summary. Spell the medical conditions correctly, report my SATs etc. correctly and don't give me three different ages in one document...
Ahhh, sorry, went on a bit there, didn't I?! *Breathes*. An awful lot is about assumptions and the need to be seen as an individual - this is the one bit of advice I'd give if only one is allowed.
I notice certain themes cropping up here - I do think it would be good if certain people read this!
I would like to get across the fact that (at whatever severity level) we aren't doing this for fun or attention. Yes, there are malingerers, hypochondriacs and people with Munchausen's out there, but don't assume everyone you encounter is one of them - I'm pretty sure that people who are serious enough fakers/hypochondriacs to keep on demanding unnecessary tests and treatment etc are not that common. If I could avoid seeing doctors from one year to the next I would be very happy, and if I'm worried it's because my body appears not to be working properly and it's interfering with my life.
(Thankfully haven't had this myself that much, but it's something I do worry about esp when I've had enough of various medical and non-medical people saying 'well, maybe it's down to anxiety' - and sometimes I've caught a hint of it when tests etc are normal and they can't find the problem).
yes i need to get my asthma under control, its harder than you think..
yes my chest is clear now but i did just take 4 million puffs on my inhaler so it should be..
and take a look and read all of these comments cuz although there are a lot of illnesses out there that can kill you- asthma can kill you in seconds and yet no one seems to care ""its not much more than a cold right?"" my friend said to me..my reply ""i wish."" 
but hey ho you struggle through
I would like to tell them that blood gasses and arterial lines really, really hurt and please don't do them without a local anaesthetic I know it may make it a little harder for you but hey it makes it an awful lot easier for me...especially as you are going to do it many, many times. And yes I do mind if you have one more try!
That although I come into hospital when really sick and get made better doen't mean to say I have days at home when I really struggle, just because you don't see it doen't mean its not happening, just because I am not making a fuss every day doesn't mean it isn't hard.
Just because I have been there and done that and got the tee shirt when it comes to asthma treatment doesn't mean that I don't still get scared and would like some reassuracnce.
Thank you to all of you who ask me what would be best...and tlisten and respond. You are the peeps I truely trust and would like to treat me everytime my chest gets a bit stroppy.
Thank you to those who know I hate ITU and take the time to explain and rationalise with me about why it is the safest place for me to be...and especially thankyou to the ones who held my hand and looked directly at me whilst explaining...I am sure you don't know how much that means. Please educate others about patient care.
Thank you to all who care about me as a whole person not just a set of stroppy lungs...who ask how I feel, ask about work and my life beyond the hospital walls...you give me confidence that you want the best for me!
After about 4 attempts to get a blood gas...
"" I keep hitting the vein instead of the artery ""...""Would it be OK if I tried in your groin as it's easier to find down there?""
Er no it bloody wouldn't be OK. ! My arms are lookin like something from a horrow film with all the blood gas attempts and your'e not going anywhere near ""down there"" with a needle that size !
To the triage nurse: (thankfully my husband said much of this for me!!) Just because I am not making a huge fuss it doesn't mean I am not suffering. It might be an idea to check my peak flow BEFORE you judge me. Just because my symptoms did not come on suddenly it does not mean I am not having an asthma attack. Just because you don't hear any wheezing it does not mean I am fine. Please take the time to learn about asthma.
To the doctors who treated me in A&E: thank you for being lovely!!
*Don't ask 'what do you want me to do?' I don't know - you're the professional! Yes, I do want to participate in my treatment or whatever but I need some advice and guidance, so don't just leave it all up to me, give me the options and some information.
*Even if the results are normal, please don't just leave me wondering for months until my next appt - I know it isn't urgent if you don't get in touch but would still like to know what is going on and if you have any more plans, or if there is anything at all you can do before I see you again, especially given how long it will be! It is possible to send a letter, I have had them before.
Do not use the phrase ""nothing more we can do for you"". How are we supposed to remain positive when you tell us that?
Please don't keep us in the dark! If you're planning to run a lot of standard tests please tell us, as far as you can, exactly what they're going to be and what you're looking for, and afterwards let us know the results even if they were ok. Maybe ok not to say IF you are testing for something really nasty 'just in case' but you think it's very very unlikely as we might get freaked out, but even then you could stress you're just covering all the bases.
Before you give me my injection, please could you read the information leaflet about how and where it needs to go. If it is meant to go in my bum, that's not half way up my back (over the waist band of my trousers) cos several days later it still hurts!
Youve walked in seen me putting in a new neb please dont assume as its one of yours it could work
Please dont assume my blood pressure is wrong and do it millions of times
I actually know a thing or two about my body and my condition, we've been getting along with things for 28years now, you, me and it only 5 minutes! When I tell you my veins are too small for a pink cannula it is not because I am being fussy or weak it is because they are. When I say that the veins in and around my elbow are only pretending to be half decent it is because I have been here several times, just because you don't like doing lines in hands and feet doesn't me you have the right to use me as a pin cushion. And for crying out loud when you assault me with your needles in places I told you wouldn't work don't laugh and say 'hmm, I didn't think that through properly did I?' What you should have said was I didn't listen to you and maybe I should have.
(I hope with ranting like this I might not actually fully attack the consultant when I finally see him tomorrow) ;P
Please don't make me wait for months, take a morning/afternoon off work, bust my guts trying to get to the hospital and wait an hour in your waiting room for a ten-minute chat in which all you do is tell me absolutely nothing both of us didn't know already and arrange a test I could have had before but will now have to come back for.
I know the system's partly to blame and you don't have much time but please make something of the time you do actually have - and please, please actually read things like the letter from the physio etc before or at least while you see me, so we both know what's going on.
(Sorry, rant here again. This was how my appts with previous cons tended to go and worried the same is going to happen with my follow-up with the one I'm seeing atm. I hope this is just me being pessimistic and possibly unfair).
All of that, Geina!! I don't wheeze even when I'm really bad, except for in a few select circumstances. Some doctors just listen to my chest and go 'oh you aren't wheezing, that's a good sign' when my peak flow is 160 and I am clearly having trouble!
To GPs
1) Not all asthmatics wheeze, a "silent chest" is a very bad sign
2) your personal experience of asthma may be limited - not all asthmatics are like your child who appears to have only mild asthma (sorry GP I like you but really your child occasional need for ventolin isn't the same condition as this middle aged asthmatics....)
3) even when correctly used not all asthma medications work for everybody (if a med doesn't work it doesn't mean I'm not asthmatic)
4) If you are going to give me advice please make an effort to keep up to date with asthma research, I'd feel much more confident in your advice if i didn't feel like you where 20 years out of date (I believe your NHS training allowance is quite generous...)
5) do you know what the guidelines are for treating asthmatics? (The latest NICE guidelines can be found easily using google)
6) are you sure you aren't more interested in saving costs than providing appropriate care for patients? (unsurprisingly I don't bother with the practice lead doctor, he never offers any treatment and shoes me out of his office coughing without even asking me what the problem is)
To hospital specialist asthma clinic doctors
Please offer a easier access 24 hour service for when I'm having an exacerbation, my GP is out of her depth, and A&E complain that I should be seen urgently by resp clinic but don't have the option to refer me.
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