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floating_ profile image

Sorry, this will likely turn into a rant, but as I'm still new to my (re)diagnosis (had asthma as a kid, it went away, it came back), I don't yet know what is normal.

Last night I had a severe asthma attack, probably the worst one yet. Had to wait for over 5 hrs to even get obs done at which point I was struggling a lot, and began to get incredibly dizzy due to having them take my blood/place a cannula, my breathing was worsening. Couldn't walk, barely could talk, couldn't lift my head up had a high heart rate (despite being on medication to lower my heart rate, Ivabradine!). Breathing felt impossible. Was also admittedly quite agitated as no one was listening to how bad things were getting.

They kept telling me I was having a panic attack despite them knowing my pf was around 40% of my personal best. Like was I actually not having an asthma attack? If I wasn't, why did the treatment eventually work? (Nebs, IV hydrocortisone, fluids). Why did they tell me to breathe into a plastic bag??? Some lady also told me to "come on" as I was attempting to stand, as she has "other patients to care for". Don't know who she was, couldn't lift my head at all by that point.

Sorry. I'm just quite shaken up by this and I'm concerned that my mental health diagnoses will be used unfairly against me in the future. Any advice is appreciated.

45 Replies

Hi FloatingYou most certainly didn’t need to b told u were having a panic attack. U needed reassurance.

The staff were probably run off their feet.

As for using this as a future mental mental issue they won’t because it’s natural to b upset when u are gasping for breath etc., I’m sure u are not the first or last person to feel worried and overwhelmed at such a time, they are very used to it.

I’m glad it it all worked out well in the end. Take care and mind yourself 😘 xxx

I am so sorry this happened to you. It sounds awful. Having people tell you that all of your symptoms are anxiety / panic attacks when you KNOW that they are not is probably one of the least helpful things ever. And ironically quite anxiety-inducing because you know they are probably not going to give you the right treatment once they have made a host of incorrect assumptions about you.

I think the reality of medicine, especially within the UK system, is that there are many practitioners who will always choose the easy route for many reasons - and yes, if you are complex and do not have a 'simple' diagnosis and resolution that sometimes means that access to care is compromised and it is hard to get what you need. It is far far easier to tell someone they are having a panic attack than to try to solve a difficult problem. That is not your fault. It is theirs, no matter how much they try to pin it on you.

I know the feeling of being shaken up by medical professionals refusing to take you seriously when you are very unwell. It's hard. I don't feel like I can tell you this won't happen again, or that you are wrong about what might happen in the future, as my experience is that it happens all too often. And for me, having people tell me I am worrying about nothing is really invalidating, so I won't do that. But you will find (other) professionals who will listen and help. And you will figure it out so that you know better how to deal with it, and have more ability to advocate for yourself with these new symptoms.

I hope this helps at least a little - and that that things improve for you soon.

Lysistrata profile image
LysistrataCommunity Ambassador in reply to helenac77

This is so true! Especially the part about it being anxiety-inducing when they won't listen and say it's anxiety. My head is so messed up over this and too often it's been taken as 'proof' that they're right.

Also agree that too often they take the easy route if you're complex (spoken as an asthma unicorn).

Lysistrata profile image
LysistrataCommunity Ambassador

Ugh.I'm so sorry this happened. So much of this is inappropriate. Sadly this kind of experience doesn't seem to be nearly as unusual as it should be. I agree with HelenaC that sometimes they just take the easy route.

I wanted to highlight on the open forum so others can see this too, as I think many people don't always know what should happen/what's inappropriate, but just for starters:

- waiting 5 hours for obs: even if you weren't urgent, which wasn't the case since you were and shouldn't have had to wait anywhere near that long, how do they know.someone isn't urgent if not doing obs and triaging properly?

- peak flow isn't the only indicator and doesn't have to be under 50% to be having a bad attack, but if it is at 40% they should really be paying attention

- plastic bag. I can't even. A PAPER bag isn't even recommended for panic attacks any more. Breathing into a bag can be actively dangerous in asthma, as it's designed to get you to reinhale your carbon dioxide. There is no way at all they should have had you breathe into a bag.

- pretty sure it's obvious to anyone that the comment you got about hurrying was wildly inappropriate in any circumstances, but just in case am just 😱😱😱😱😠😠😠😠

And yes the fact the eventual asthma treatment you got helped plus your PF etc does strongly suggest it was asthma as the main problem. I think anyone would be agitated by that experience however, and I loathe it when they ignore me, treat me like this and then say the resulting frustration and emotions 'prove' that it was anxiety etc. No it proves they need to listen better and not act like this. Grrr.

twinkly29 profile image
twinkly29 in reply to Lysistrata

So much this!

helenac77 profile image
helenac77 in reply to Lysistrata

All of this also, having deliberately not commented on the practicalities due to lack of knowledge!

And glad of your response about the plastic bag - that sounded like a truly terrible idea but having never been in that situation I refrained from commenting just in case it was somehow a thing that might make sense in the circumstances 😂

I completely agree with everything lysistrata said. I'm so sorry this happened to you, and there were many failings that occurred. The breathing into the plastic bag is wrong and so dangerous on so many levels!

Unfortunately you will find poor treatment or being told its anxiety is a hugely common issue, and I know for myself and a few others on here caused huge psychological issues in seeking treatment.

This has happened to me on several occasions which led me to make a formal complaint through PAL'S. I had some form of apology from the lead consultant, with promises of more training. I mean there was a lot of excuses in there, but just having validation helped massively and the next time I was admitted my treatment was amazing!

Once you're up to it I would definetly flag up the issues with the hospital, the plastic bag incident is a serious event!

Yep... when will they realise that such attitudes and so on actually cause psychological issues for us! I have a care plan which includes listening to me and discussing treatment with me (on the back of past issues in care) and yet it still happens. 🤦‍♀️

Exactly! Being told its anxiety causes anxiety! It's rubbish even with a care plan you're ignored but then I always find it depends what team is on. Love the game of hospital roulette!

I agree. The more of us who make formal complaints to PALS and copy to our MP so they are aware of where improvements need to made, the better because if those that can make improvements are blissfully unaware of what is going on at the coal face, nothing will change.

Would reply to all, but still feeling quite rough, but I just wanted to say thank you all so, so much.

I think part of the issue was I did start to panic when I realised they weren't (or thought they weren't gonna help me) and especially with the plastic bag. Unfortunately, one of my best friend's ended her life with a plastic bag so it was hugely upsetting and they wouldn't take it away, and made me more dizzy (I'm prone to passing out, so I'm quite surprised I didn't). I couldn't explain due to talking limitation, and my mum wasn't thinking, so it was so stressful. I swore a lot too with the words I could say which definitely wasn't my finest moment, they threatened to get security to remove me, because I was swearing. I definitely wasn't the perfect patient but I was so agitated and struggling and felt unheard that I had no idea what else to do as the polite and proof route wasn't helping. As I said I could barely lift my head, couldn't walk, talking was so limited, etc. Almost went into SVT (a type of arrhythmia I have). Etc. Just overall really unwell. And beyond exhausted.

Feel quite ashamed. 😥 My mental health issues are pretty severe, I do grant them that. But I don't typically get anxiety surrounding my health. I feel like the fact I was slightly panicking actually showed how unwell I actually was? If that makes sense.

twinkly29 profile image
twinkly29 in reply to floating_

Please don't feel ashamed - none of what happened is your fault or anything you did wrong. It's time some HCPs realised the impact their actions or words have on people - either stuff that's happened in the past impacting on us now or stuff they say or do now.

There's a difference between someone going in with anxiety or panic attacks (and goodness knows how they'd get the right support or treatment given the attitudes given when they say it's that!) and someone becoming anxious because of the reception they get.

One of my discharge letters basically said it was all anxiety etc - never mind that I was actually treated for my usual severe asthma and covid! But while I know what was said/written was wrong, the impact it had is huge. This isn't you though.

floating_ profile image
floating_ in reply to twinkly29

Thank you.

This is sort of why I kept denying anxiety at that point, even though there were clear points of peaked anxiety for me in there. I just didn't want them to look at and blame the anxiety. Got angry and got threatened to be removed. Like what would security have done??? Throw me out? They were in the room anyway already, and they did nothing...I felt like a criminal because they couldn't understand or chose not to. It was horrible.

They kept saying as well that I was getting too much carbon dioxide in my blood because I was panicking?? I swear that can lead to death and panic attacks typically don't cause that?

Will definitely be making a complaint with PALS too. Forgot to say that here.

Honestly this is their fault. If they had treated you better, and given you the correct treatment this would have been avoided. As lysistrata stated there is a difference between swearing about a situation to being verbally abusive which it doesn't sound like you were. I'm a student nurse, and I've been treated a million times worse by patients and i never requested security! We are taught all behaviour is communication, and it was obvious you were understandably frustrated, as a nurse I would be thinking how do we solve that? Being accused of it all being psychological and getting security is definitely not a good way!

Breathing out to much carbon dioxide causes less Co2 in the blood which results in respiratory alkalosis. This is a sign of hyperventilating but is also very common in asthma as its all part of the compensation. As the attack gets worse your blood normalises then you start to retain Co2 in you're blood which is respiratory acidosis and is an ominous sign. This would show end stage attack and beginning of resp failure. Unfortunately not many medics understand the compensations that can occur, especially if your o2 is good to and just assume panic attack.

The guidelines can be confusing for medics to follow, but if you show any sign of a severe asthma exacerbation e.g peak flow 50% or less, high hr etc then it should be treated as such.

Thank you so much for your insight, it really means a lot. I'm hoping those staff members weren't too upset by my outburst, I do feel horrifically guilty about it. I'm very worried I'll have to go back in today as talking is really difficult but sort of responding to ventolin just doesn't last, and I'm basically in the red in terms of pf. Don't know what to do really. I'm quite scared but feel bad admitting that as I shouldn't be.

Spent quite some time typing this out. Sorry everyone will endeavour to get back to you all just difficult. Hope everyone is safe and OK.

Honestly I'm sure they are fine, it really sounds like an overreaction on their part. If you're in the red, I'm sorry to say I think you will have to go back. If they question it, tell them about you're low peakflow, and what should you do about it. No panic attack lasts for 24 hours and you're at high risk of worsening. Is there anyone who is able to advocate for you, if you get agitated?

I know its hard in the moment, but you're still very symptomatic, so at the very least they should help stabilise you untill you're symptoms reduce.

Eian59 profile image
Eian59 in reply to floating_

Hi I find that staff in A and E don’t know enough about Asthma and how to diagnose it ie wheezing chest and silent chest. Waiting five hours to be seen could have been fatal and the bag issue needs to be complained about as you would have been poisoning your self with your own co2. The staff need training on the symptoms of Asthma and how they can present themselves. Also you are meant to see a Gp within two days of your discharge. I am glad you feel better now but don’t blame yourself for how you were treated and don’t let it put you off in future. But definitely complain about your treatment.

Lysistrata profile image
LysistrataCommunity Ambassador in reply to floating_

Ugh. I am no expert but I think they might need more training on how to treat and communicate with patients with mental health conditions, including those brought on by stressful situations, whatever the reason they are there for.

There is a big difference between swearing about something and swearing directly *at* someone.or abusing them. It doesn't sound like you were verbally abusive to them at all, just swearing about the situation, which is understandable with the way you had been treated and the situation with the plastic bag. That must have been awful especially not being able to explain (and I'm so sorry about your friend).

I understand why they have policies about not tolerating when someone is verbally abusive, but even if you had been, I have an idea they are still meant to provide emergency care? (Though I am not at all an expert and don't work in healthcare so could be wrong about that).

Also while just having a mental illness wouldn't be an excuse by itself without considering the whole situation and how it affects someone, I feel like in general pushing someone like that, not providing appropriate care and then threatening to remove them when they get agitated because they aren't being treated, can't communicate properly because they're ill and feel increasingly poorly, is a really bad way for them to handle it for anyone. (Again not an expert but it just doesn't seem like a good way to approach this).

floating_ profile image
floating_ in reply to Lysistrata

I wasn't swearing at them, save for one time when I told my mum directly to f off because she kept saying to calm down as well (have since apologised and this is not in my character, but that's no excuse either, will work on this). The other times I was just saying the f word as a way to explain how serious the situation was? But exactly.

I dunno, nothing happened obviously from the security perspective even though I told them to go get security then and yeah. Like I wasn't sure I cared what happened at that point. 😕

Like I have a feeling if I had been left any longer in there I would've deteriorated even more and lost consciousness, because I feel it often before it happens anyway. Not that they wanted to care about this nor could I tell them because of the talking issue and not wanting to their waste time.

Again, I'm quite ashamed and hold my hands up to my own part but I feel like it wouldn't have gotten to that point if I was treated promptly?

Lysistrata profile image
LysistrataCommunity Ambassador in reply to floating_

I mean not great re your mum but honestly the calm down thing would annoy me even without the rest! I get why you feel bad, I would too but I also get overly exasperated with that kind of thing and can snap at people I am close to when they don't seem to be getting it. I also need to work on that.

Re the carbon dioxide, they seem a little confused... low CO2 can happen with panic (and also with asthma in the earlier stages, which can be confusing!) If especially low it can cause dizziness, tingling etc. High CO2 is as you say life-threatening and usually happens when asthma is very severe because your airways are too closed up to exhale it properly. They seem to have it backwards!! I would like to think they would be more proactive if they had actually seen high CO2 levels.

I do feel like this could all have been avoided if they had just said when you came in oh look your peak flow is 40% and you have other signs, have some asthma treatment. It is really difficult when they can't seem to understand that anxiety doesn't mean there is no asthma!! It often does feel like you can't admit to having any emotion ever, however understandable, because they latch onto it as the whole thing.

CANINE12 profile image
CANINE12 in reply to Lysistrata

There is a brilliant post written by breathingstephen.com/o2sats and asthma attacks revisited. If the link doesn't work just go onto his blog and do a search.

He is a respiratory nurse who has severe asthma. I think I may have posted the link ages ago but it's well worth reading and showing to any medics. I've had a few times where my carbon dioxide levels have gone up causing respiratory arrest unfortunately. I have the webpage bookmarked on my phone to show any confused ignorant and over tired medics that may need a helping hand.

So sorry to hear that you are going through this. I agree with what others have said, the care you received sounds absolutely negligent.

I have been under phsychiactric services in the past so any details are not connected to general medical. So unless I tell them what phsychiactric issue I have they never know. To be honest I have found that they don't need to know. If you are on medication for anyything phsychiactric they may work it out but I found with decades of being treated for asthma attacks in A&E, paramedics etc they only need to know medical stuff. Phsychiactric diagnosis can muddy the waters so I now don't say anything and it's made a big difference.

I hope you are feeling better soon. I'm on a second tapering dose of pred in a short space of time. It's very frustrating but knowing that they work and keep me safe until my lungs decide to behave is better than my not being on them. I'm trying to avoid being on them long term. Not sure if I'm a candidate for biological therapy, more blood tests are being scheduled.

Thank you so much for the kind words everyone, being moved to the resp ward soon at some point.

Had a pretty severe asthma attack again on the ward and they took so long to actually do anything about it. Feel unsafe here tbh.

Others have covered many points concerning your poor treatment and I agree that once you're well enough and back home, a complaint to PALS should be made as some aspects of their treatment was highly questionable, if not dangerous.

But I wanted to assure you that you don't need to apologise for your "outburst". If staff are unable to behave appropriately then patients are going to exhibit dissatisfaction and sheer frustration. I've had two horrible A&E experiences, one with asthma and one with post op pain. The pain one was the most recent of the two and the nurse who admonished me for screaming in pain (I had a twisted bowel) apologised to me when she was taking me up to the ward (by then she knew what I had). To say the experience was distressing is an understatement. I completely understand why you were frustrated and anyone with a modicum of awareness would have realised that you were fighting for your life. I do wonder if A&E staff have a common sense by-pass op before they start work on the unit.

My most recent visit to A& E was with a broken shoulder and the nurse appointed to take 20 minute obs just didn't bother. In fact, she was so reluctant about her duties that she shuffled everywhere rather than walked and her body language screamed "I hate it here". Then I overheard the nurse in charge talking to one of the doctors about said nurse - apparently she had been sent over from her home hospital to cover staff shortages and was proving to be a massive disappointment. I guess we have to accept that not everyone who works in our NHS has a vocation. I've seen amazing staff go above and beyond, with great compassion but also seen staff who just don't want to be there or who seem to be burnt out/exhausted.

Here's to a swift and full recovery. Take care.

Sorry to hear about your terrible experience in hospital. What everyone else said! 😖😡

I think a complaint to PAL’s is in order - this just should not happen!

Take care, hope you feel better soon x

This is a terrible read and yes a PALS complaint indeed. I had a similar experience at surgery. Being told I had anxiety, calm down, buy a big scarf to warm the cold air! Both trying to explain that this was my normal Asthma presentation was like walking through treacle. Came home with husband who now has black mark on my medical records for trying to stick up for me.

That night breathing so laboured I barely spoke. Rushed to resus in....blood gas showed respiratory failure. Admitted.

I'm now to afraid to seek help 😐 although I do.

What a terrible experience. It is awful when they do not listen to you and then say that you are having a panic attack. This makes you worse making it look like you are having a panic attack but they have created this themselves, I once said to a medic hold your breath and wait until you need a breath and then see what it would be like if you are gasping for a breath, they soon change their minds. You should ask for assistance when you cannot walk and someone should help you. If they don't help ask what will happen if you should fall or pass out. I was told that if I ever require help I only have to ask and my request would be sorted out as quick as possible, because if you fall they will have to do a 4 hour questionnaire as to reason for your fall. Never be fobbed off by anyone and tell them that they are dealing with your life. In the past I have told Doctors, Nurses Paramedics etc. that they do not know me and have not read my case history {Only a bit of notes on the ward} and they cant make a diagnosis as quick as they have done because they have not asked me for basic details and tests {Peak Flow, Listen to my chest etc.} I could carry on for a lot longer, If you want contact PALS at your NHS

Hope that you are feeling better

Thank you guys for all the support. Really means a lot.

Ended up having severely low phosphate causing respiratory distress (hence a bunch of asthma attack). Finally getting that treated.

twinkly29 profile image
twinkly29 in reply to floating_

Ah yes electrolytes like phosphates and potassium are commonly depleted by bronchodilators and steroids, as well as breathing too fast, which one might well in asthma!

I don't think low levels actually cause asthma attacks but can cause other shortness of breath. But obviously one needs safe levels of stuff like that regardless - particularly for the heart and so on. I often get given lovely drinks of potassium 🤢 and phosphate (less 🤢 but still gross) in hosp!

floating_ profile image
floating_ in reply to twinkly29

It was also augmented by my anorexia, I've been struggling quite a lot with eating the last few weeks especially, so the Dr. said my anorexia was a contaminating factor too. Have been on phosphate/Sodium/potassium drip

twinkly29 profile image
twinkly29 in reply to floating_

Yeah that would do it too . Low electrolytes can definitely cause breathing symptoms (not actually asthma but different breathing symptoms) which is another reason they need to keep an eye on levels - potential heart issues if levels are too low or too high is obviously a biggie, but eliminating other reasons for breathing symptoms is important too; whether it's electrolytes, anxiety (eg as an add-on/after effect of asthma issues), breathing pattern disorders (again as an after effect of asthma issues), or something else, it's good to manage those so they can see what's left that's actually asthma.

floating_ profile image
floating_ in reply to twinkly29

Yeah my neuro breathing dysfunction is playing up something rotten atm but my pf is still super unstable. It'll be okay eventually I'm sure. Thank you for all the support.

twinkly29 profile image
twinkly29 in reply to floating_

It will, it might not seem it right now, but you will get there.

Edited to add that it's hard enough sometimes with just asthma but you've got a really complex myriad of things going on so I really feel for you!

floating_ profile image
floating_ in reply to twinkly29

Hah yeah, was trying to explain that to the Dr. I knew I was fine post nebs, it was just breathing dysfunction because my brain is a little slow. 😂 thank you though. Means a lot.

Yep have to have potassium I.V everytime then the drinks 🤢 luckily the nurses let me add my own water and I take them like a shot 😂 luckily only had phosphate twice but equally vile!

The joy of water roulette - too much is massive gross drink, too little and there's bits in it 😱😱😱😱😱. Thankfully my hospital they automatically ask how much if someone can't do their own, or just let people if they can!

I am really sorry you had to experience this kind of treatment. It is becoming all to familiar response. I had a similar experience but was discharge. Only to be admitted onto a respiratory ward by my consultant 2 days later. It very upsetting that you don't feel heard.

floating_ profile image
floating_ in reply to Stacey40

Hope that things are better for you now? Will try and see if I can have my consultant appointment pulled forward (it's in August). Do truly hope you're doing OK.

Hmmmm. Yep its quite normal to have a panic attack when having an asthma attack!! I used to be advised to do the breathing into a paper bag thing when I was very young by my mother who was a nurse - something to do with focusing on breathing OUT. I would advise you move on and don't fret or agonise on what has happened - it will be different next time. you may just have caught the staff at a bad time - we all have off days

floating_ profile image
floating_ in reply to Birthday60

I mean, I guess so yeah. I'm not agonising over it. Will still complain when I feel up to it though.

twinkly29 profile image
twinkly29 in reply to floating_

Definitely contact them when you're up to it. Everyone has bad days, that's true. But inappropriate behaviour and/or treatments (either because they're outdated, unsafe or inappropriate for a conditon or the patient) is very different. Having been there myself, those in charge were keen for such things not to be happening... funnily enough.

As a random small update, still in hospital but finally started Spiriva this morning!! Thankful for that!

twinkly29 profile image
twinkly29 in reply to floating_

Oh finally!! It might take a while to kick in fully but at least it can start doing that now!

floating_ profile image
floating_ in reply to twinkly29

Definitely! Long time coming! Is a little difficult for me to use, but I'll figure it out. Hoping that it kicks in soon. Fingers crossed!

Hope you're doing well. ☺

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