When will atypical asthma patients start being treated properly? There must be some way of raising this - it's all here on this page!

[CindyID]

I've posted about my own recent experience as someone who's main asthma symptom is coughing, although I do get short of breath and sometimes wheeze and get tight.

This week I've had yet another experience of not being listened to by paramedics I didn't even ask for, and treated like I was having a panic attack, and twisting everything I said as evidence that it was anxiety.

I completed the 111 online form as I noticed i was feeling shivery so took my temp, which was 38.5 and I'd previously in this flare up been admitted to hospital with a high temp and high infection markers, which needed antibiotics.

Whilst on the phone to an out of hours Dr I started having one of my coughing attacks, which I have a loaned nebuliser to treat. I told the Dr I needed to take my nebuliser. My cough sounds very distressing and she decided I needed an ambulance to be checked out. Obviously in the middle of an attack I wasn't able to think too rationally that I probably didn't need one. The nebs usually settle it. Only when they don't and I can't breathe do I usually ring for more help.

For context, with the paramedics my SATS didn't drop below 95 (they never do), my temp was still over 38 after paracetamol should've worked and a wheeze was heard with the stethoscope (i very rarely wheeze, or at least, wheeze is rarely heard). I had a high heart rate, partly from nebs but also from the cough, which sends it racing. But they said it was too much salbutamol.

Anyway, without rehashing the whole humiliating episode, which included being told firmly to stop coughing, I'm now at the point that I won't be ringing 999 until I have a visible obvious sign of respiratory distress eg blue lips or audible bad wheeze. I honestly can't face another episode like that.

What I don't get is, we know that I'm not alone, Asthma UK know I'm not alone, this has been going on for at least 3 years, since my diagnosis, so why the hell are we still going through this?

What is something proactive i can do to change this? Because honestly, I'm at a loss with the whole thing.

I'm seeing one of my respiratory team Drs on Wednesday and I'm going to have it out with him - either it's asthma and I need these 5 million drugs I'm on, or it's not and I can come off them. Which is it?

As you can probably tell, I'm angry and frustrated with the whole thing and I've had enough of it. One thing I'm not though, is flippin anxious!!!! 😡

[twinkly29]

The "HR is the salbutamol" thing does my head in! Coughing hugely increases my HR, nebs actually bring it down, it's been witnessed many times in resus and on resp ward. At home I can be on lots of nebs and it's higher than normal but not worrying high....unless it's acute when it rockets. But getting that officially acknowledged is impossible.

I totally agree that, somehow, doctors (GPs, a&e, medics), nurses including asthma nurses, and paramedics need retraining. Some are good but others, most sadly, are so fixed and blinkered. Appropriate treatment actually speeds up recovery and means longer/more stability generally so you'd think it would be in their interests. I do find that many don't like the patient knowing themselves and of course if we're constantly having to fight our own corners then then we do ourselves - because people don't and won't listen.

[CindyID in reply to twinkly29]

I cried in frustration eventually - more evidence of "anxiety" I suppose. One of them had been out to me before in this flare up, had clearly made up his mind before he got in the door and had told the other paramedic. This was clear from the way they both spoke to me as soon as they came in.

"I expect we'll be coming out to you a lot won't we?" Knowing smirk.

No, I've lived here a year and never needed to call you until this flare up. Plus, I didn't even call you out tonight.

Absolutely no compassion. Even if it was a panic attack or anxiety, where was the compassion?

[twinkly29 in reply to CindyID]

That's awful! Assuming the consultant says you do have asthma (when you rant at them!), which I assume they will, it might be worth emailing the ambulance service with some feedback.

[CindyID in reply to twinkly29]

The only problem is its a really small town so I'm likely to see the same people again sometime. Maybe they'd have taken the feedback on board, maybe they'd be worse?

[twinkly29 in reply to CindyID]

Tricky.... I'd be apprehensive too....is there anything positive you can say at the same time (not necessarily about that occasion but other ones)? I always feel better if I can say this was really good but.....

But why can't they just be aware so you don't have to....🤦🏼‍♀️

[CindyID in reply to twinkly29]

Yes I've had some really understanding crews who have reassured me I've done the right thing in calling. I'll sit on it for a bit and cool off first i think.

I know, I shouldn't have to, but still I do. Xx

[twinkly29 in reply to CindyID]

Also a good idea! I did that when I contacted Pals... waited a bit first to process stuff.

But glad you have had some really understanding crews.

[kimmy22]

Hi. Oh I feel yr anger. I’ve been there many times. Flip side I’ve also had many paramedics who generally care and say you did the right thing that’s why we’re here. So confusing and frustrating. My asthma does not come with a wheeze in my chest. Does not come with low SATs and my temp is always normal.

I do however have a noisy breathe. Which has now after 30 years been taken seriously.

I can only offer that you put this down to experience and don’t ever think you should wait till yr seriously Ill before you ask for help. Asthma kills. But I totally agree that awareness needs raising that asthma patients do not follow a tick list. We are unique and all hv different markers x.

[CindyID in reply to kimmy22]

I've had some good ones too, but I honestly don't think I would consider calling them out anytime soon after this. Traumatised is a bit of a strong word but certainly had my fingers burnt and no desire to repeat it. Xx

[B_Asthma]

I find 111 over-reacts. One time they wanted to call an ambulance for me with asthma. I told them I am near a hospital and I can get a cab quicker than it will take to get an ambulance to me. Luckily that worked.

Anyhow, I am like grandpa Simpson and write letters of complaint. It is the only way to get things to change and after a few letters of complaint, I am beginning to be listened to about my asthma. Write a letter to the Ambulance company. In the letter detail why the ambulance was called, a summary of your asthma history, what the ambulance personell said to you and how it made you feel.

[CindyID in reply to B_Asthma]

I will do that, thank you

[MMBJI]

Hi CindyID,

I am so sorry that you went through that and are having a hard time.

It’s so frustrating. I feel your pain. Myself and 3 children are all atypical asthmatics, The treatment we receive is so variable, from all levels of health care professionals. (I saw a different consultant last week who is questioning my 40+ year history of allergic asthma and sending me for more tests for heart function, vocal chord disorder and something else that I can’t remember- I was supposed to be going down the xolair route! She just kept saying that I have no objective data to indicate inflammation or obstruction.)

Anyway, I don’t know what we can do about it, but I have been thinking the same thing - something needs to change.

People post on here almost weekly about their atypical asthma.

Maybe we need to contact Asthma UK directly, we could do a quick survey through this forum. Asthma uk might be able to help us to know how to move forward with this.

It’s dangerous that so many of us are left afraid to ask for help when we need it. Oh yeah! Then we get told off for leaving it so late when we do ask for help!

I hope you improve soon. I have been rubbish for over a year now and am very bored of it all.

[mylungshateme in reply to MMBJI]

This is interesting similar to me my story is far too long but you will see it on other posts. Basically went to see yet another consultant for biologics but because I don't wheeze and sats don't drop he doesn't think asthma... but breathing pattern disorder.

Also apparently if your a true asthmatic you wouldn't just have issues in winter and summer. And because I'm breathless that's not asthma... anyway I spoke to clinical psychologist who agrees I'm not anxious just about that appointment!!! And have asked for 2nd opinion at another trust!!!

Also the lead respiratory consultant rang me to apologise and told him exactly how us asthmatics are made to feel at appointments he thanked me for feedback is going to deliver more training.

[MMBJI in reply to mylungshateme]

Oh yeah! That was the other thing, Respiratory physio for breathing pattern disorder!

[mylungshateme in reply to MMBJI]

Does your head in doesn't it! I've been referred to physiotherapy but no one in post.... 🤦‍♀️

[twinkly29 in reply to MMBJI]

This can be really useful though - most asthmatics do have breathing pattern disorders at times, usually linked with exacerbations but sometimes longer term and resp physio can help with that. But it really needs to not be used as a reason when the asthma is not what's perceived a classic! Sorry that's maybe what you meant though!

[MMBJI in reply to twinkly29]

I am sceptical ( for my situation, not of BPD generally) but open minded and will do what they recommend.

Kinda feels like another thing to eliminate.

[twinkly29 in reply to MMBJI]

If they use it for that, or in a way that helps but doesn't just then ignore the asthma, then I think it's good. But it's really not when they use as an excuse instead of actually dealing with the asthma because it's easier for them to label it as something else. Sadly this seems to be very common!

[mylungshateme in reply to twinkly29]

Oh yes so sorry didn't mean it as a complete negative just when they as in my case say "prob no asthma prob just breathing pattern disorder but we don't know yet" really not helpful to me as you know been really upset by last cons but my RAS 2nd opinion has been accepted 😁 yay and as for the whole "its anxiety" clinical psychologist ruled it out the only thing stressing me is the consultant appointments contradicting things. And being mis informed about asthma ie no wheeze sats tachycardia etc etc. 😔😆.

[HowNowWhatNow in reply to MMBJI]

Great idea re: Asthma U.K.

[Itswonderful in reply to MMBJI]

On a positive note the consultant you saw is aware of VCD which is unusual!

[CindyID in reply to MMBJI]

Sorry you and your family have been going through this, it's pants! I've talked to AUK about my experiences on a number of occasions. Maybe I'll give them another ring - I'll see what the consultant has to say on Wednesday.

Hope you get things on track soon xx

[Hidden]

I very rarely have to phone for ambulance for my asthma, but the paramedics I love are the ones who, after saying hello, ask me "Are these normal symptoms for you?". Could just hug them! In other words, they understand that with 40yrs experience of my asthma, my body knows when symptoms are NOT my usual day to day ones and that 'something is definitely wrong'! Hope everything gets sorted for you soon.

[CindyID in reply to Hidden]

I'm so glad you've had a good experience when you've needed help. I agree, all it takes is to listen to us and what we're saying about our own bodies. I have had some good ones too xx

[HowNowWhatNow]

I’m sure you know this but blue lips / blue anything is way, way too late to wait for. I’ve always been told that by paramedics / doctors.

[CindyID in reply to HowNowWhatNow]

I do, but I don't really know what else to go on anymore. I'm looking for specific instructions from the consultant on Wednesday. It's more frustrating that I didn't even call them out, the 111 Dr did

[HowNowWhatNow in reply to CindyID]

I’m sorry they acted in such a way that felt humiliating to you. It’s not on you. The doctor who called them out make the choice and no-one - certainly not a paramedic - should make you feel smaller for having a medical condition that they can’t get a handle on.

[CindyID in reply to HowNowWhatNow]

Thank you <3

[redstar9]

I had a good experience the last time my husband called out an ambulance. PF was down to 180, best is 450. No wheeze but very tight chest and sats at 93 when paramedics arrived. Also had reduced air entry on right side but no wheezing. My husband handed them my last hospital discharge letter and my asthma plan and explained that I do not wheeze unless I have a chest infection. He also explained that I tend to compensate for a while before rapidly deteriorating. He also let them know that I need ipatotropium as well as Salbutamol. They actually listened, gave IV hydrocortisone, the nebs I needed and oxygen before taking me to hospital. This stopped me from getting as bad as on my previous admission. Think they just need to be told how you present and what works. Thank goodness my husband was on the case.

[CindyID in reply to redstar9]

I'm really glad you've got your hubby to advocate for you, I'm sure it makes all the difference. I'm single, but even when I was married mine never did that for me

[Eupnoos]

First of all, I am so sorry to hear about your experience. I was reading up on the symptoms related to pulmonary function and dysfunctional breathing and it seems that one-third of those affected are women compared to men who are a fifth. Here is what a study says

"Although DB has been investigated for decades, it remains poorly understood because of a paucity of high-quality clinical trials and validated outcome measures specific to this population. Accordingly, DB is often underdiagnosed or misdiagnosed, given the similarity of its associated symptoms (dyspnea, tachycardia, and dizziness) to those of other common cardiopulmonary diseases such as COPD and asthma."

It always boils down to the paucity of data it seems.....really is perplexing that there is so little effort in collecting quality data...or evidence that can help address these conditions inspite of the advances in medical science....

I've decided to put my 20 years of tech experience in doing something worthwhile. I am creating a system that provides patients with the data that will allow then to go to practitioners with the evidence that all is not fine. Evidence through data ....not many can poo poo that.

The platform is in the making and your experience and expertise would be invaluable. I have a survey link here that I created to collect data, Would be truly appreciated if you would please fill it in if you haven't already. Would it be ok for me to ask you more questions, please CindyID MMBJI mylungshateme ? LINK to survey rb.gy/p8jjhz

[Hidden]

Reading your anger and frustration Cindy, I'm struck by how varied "asthma" symptoms can be. Perhaps it is time for a name change for the condition? Even "experts" deny a diagnosis of asthma if it doesn't present as a classic wheezing/coughing display. Might be a bit awkward for "Asthma U.K." but I'd suggest something like "Pulmonary Restriction" or P.R. for short. Let that condition be dealt with by someone more expert than an asthma nurse. (Lovely, well- meaning individuals)who are often using a tick-box diagnosis and are constrained by this.

As a nipper back in the fifties I only ever met G.P.s or "chest specialists" at out-patients.

It looks suspiciously like a money saver

[CindyID in reply to Hidden]

Interesting thought, it certainly needs looking at, or some distinctions made. Feeling much better about it now

[Hidden]

Sorry, my comment to Cindy was cut short. I was about to say that employing "asthma nurses" looks like a money saver for the NHS. They never existed back in the day and a person with breathing distress was regarded with more care. The condition has been shrugged off as a simple, easy to fix "wheezy chest" As this forum proves, that is far from true. So it is time to take this thing more seriously and address the disease with extra diligence. (I.M.H.O.)bandido2

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I agree that too often GP surgeries don't treat the position as they should ie have a properly trained nurse in this position. I don't think that asthma care should be done by a healthcare assistant with a checklist, and this does unfortunately happen too often. Even in hospital there can be a bit of variation in how helpful the person filling the role is, if they are more used to other respiratory conditions.

I also agree that asthma is very variable and too many healthcare professionals don't appreciate that. The latest guidelines do go some way to acknowledging it, but there is a way to go with this being better understood in general -as a non-wheezer and atypical, I get the frustration.

However, a properly trained asthma nurse can be extremely valuable and they really do know their stuff, including that you don't need to wheeze and that asthma is a very variable condition. As a child my asthma was looked after by 'proper' asthma nurses who did understand asthma (I didn't wheeze and they got this and seemed to understand variability, and I think this really did help keep things mild and under control back then.

As an adult I have met some amazing asthma nurses who were far more helpful than most consultants, and this is especially true of the AUK nurses who've often managed to understand far more and be far more helpful on the phone, without my notes, than some drs who have seen me repeatedly. As with any healthcare professional, understanding the condition and listening to the patient is important.

Essentially yes, there are issues with asthma care in the UK but I really don't think this is all down to care being palmed off on asthma nurses, even acknowledging that sometimes the person in that role hasn't had enough training. Having more trained asthma nurses, and more healthcare professionals in general better trained on asthma, would help.

[CindyID in reply to Hidden]

Great points both!