I'm beginning to think GP's have been instructed to stop offering treatment for various conditions!
Recently I have been to my arthritis is impacting on things I can do, "sorry nothing for it , take paracetamol or ibuprofen" but you know I can't take ibuprofen!
Then I go saying my peak flow is down, Ive been coughing for nearly 4 weeks and I've a tight chest, "give it another week or so", that's what you told me last week and the week before, "well pred can damage you bone density or cause psychotic episodes", but I might be able to breath!
Rant over! 😂
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Gareth57
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I had the same as you with my asthma Gareth. Peak flow dropped and I was consistently in the yellow zone. Saw GP. He listened to my chest. Said it was ok. Leave it two weeks - probably a virus. Two weeks later - still dropping. Back to GP. “I seem to remember we had a long conversation about your asthma last time.” “You don’t need antibiotics or prednisone, but don’t worry, should you have an attack, which you most certainly will, I will prescribe for you.” Sure enough the attacks came . Did he prescribe for me? No, I saw another doctor!
I agree, I think there is a pressure to reduce the level of drugs etc we are on.
I am on fostair 100 mart, which I like. However when we get a concentrated period of pollen etc, I need a short burst of a few days of fostair 200, to stop it escalating. This is unpopular with the asthma nurse and the consultant, while to me makes perfect sense.
I think there is also pressure to undiagnose asthma. I am on my fourth time of being diagnosed in 2 and a half years, as each time I am diagnosed with asthma I am transferred, and the new place starts again. This time they did my spirometry, the results of which were bad, so put me on pred for a week, then a week later when I was better did my spirometry again, and unsurprisingly this time it was better. They then record my spirometry as clear and my feno as mid thirties, and ignore the previous results.
Personally I think half the time they do not know what they are doing.
Agreed, in my case I was re diagnosed by an asthmatic doctor even though I don't wheeze and it was me that needed convincing as 30 years earlier I had a magnificent wheeze. I was recently asked by a nurse if I thought there could be COPD 🤷🏻♂️, but even though they said they were offering spirometry they can't because there are not enough staff! Today's doctor obviously did not think I needed pred or that I was asthmatic because he couldn't hear anything!
Sad to say but I think you may be right. Thankfully I have very good consultant care for my asthma but left at the hands of the GP it scares me to think what I state I'd be in! Unfortunately, I have had to use private healthcare for another condition due to a very dismissive GP. Getting treatment when you need it isn't always easy especially when you're not a classic, wheezy, case.
I think it also depends a lot on the gp surgery and trust in which you are under. I have never had any difficulty in getting every med I need prescribed and in fact my go surgery are extremely good. an example I recently had covid which has caused some heart issues and I sent in a copy of my discharge letter and a request for 4 new meds and it was send to my chemist within 24 hours and on my repeat meds as well.I have heard about the difficulty with other surgery's even in my area where is seems difficult to get medications. but keep on being persistent.
I had a frustrating conversation today with a new consultant who said my lung function was "normal" (my baseline is 150%, and it was 110% today). When I mentioned my baseline, I was told that "it did not matter, your lungs are better than average, you should be able to live a normal life". This is Switzerland, so I noted that the average yearly income in the world was $10K, and asked if she would be OK living a normal life on $10K a year in Basel. It ended up being a short visit.
Ahaha I wish I could think of things like that to say faced with similar attitudes. It seems very hard to get some healthcare professionals to understand what an average is, and why it doesn't mean that everyone should or will have the same value as the population average used to calculate the predicted values for spirometry or peak flow. Even within the reference populations used to calculate those values for spirometry/peak flow, not everyone of that age/sex/height was at the average!!
Guidelines also state that with peak flow, you're meant to use the personal best if it's known over the predicted - which is supposed to be a rough guide or starting point. I understand it can be hard to find someone's personal best with spirometry which is mostly done only occasionally. But there should at least be acknowledgement that if someone has achieved a much higher value, then the predicted is probably less useful.
Though I find the main problem is a lack of understanding that asthma is a variable condition - sure my spirometry may actually be ok today when you measure it, but it doesn't mean it will be tomorrow or was yesterday. Spirometry isn't the best predictor of exacerbations either (based on research not my opinion, if anyone is wondering!)
>>>Though I find the main problem is a lack of understanding that asthma is a variable condition
Lisistrata -- exactly. My original consultant in San Francisco (who ran the pulmonology department at UCSF) diagnosed it based on that. I did attach the letter from him to support what I was saying, but it did not have an effect. The logic is "if I do not understand it then it's it's all in your head". They operate by what works for 90% of people. I wonder if they used the same logic 100 years ago when the only treatment for asthma was breathing from a steamy kettle. I am sure it worked for 50%, and the rest had it in their heads, no need for further research.
The steamy kettle would have made me worse - probably proof that it was all in my head! (I had a GP tell me I was being difficult when I said I couldn't do that because it would trigger my asthma, especially if I added Vicks given that eucalyptus is a trigger for me).
I think there's starting to be understanding that asthma is a range of different conditions with different underlying mechanisms, but it feels like slow progress - especially if you end up seeing someone set in their ways.
>>>I think there's starting to be understanding that asthma is a range of different conditions with different underlying mechanisms,
Lysistrata -- I wonder if there is a way to tell a priori which practice would be more open minded. I thought that universities might be more open-minded, b.c. reading up on recent research is in their job description. E.g. the same consultant today told me that air pollution and ground-level ozone were not an issue anywhere in Europe, whereas EU reports says the opposite.
This is just personal experience, but I've found consultants at highly specialist tertiary centres are often less open-minded, including my current one and those friends have seen. They can be great if you fit their mould and idea of a 'proper' asthmatic, but not if you don't -and even then results can vary as they don't always want to hear about things which don't fit their ideas of how asthma should behave.
Obviously this isn't all of them and I'm sure some are open-minded, but it can feel like they operate within a rather idealistic research world much of the time and don't acknowledge it when patients don't fit neatly into that. And as you may know, and I've said elsewhere, asthma and COPD research have a known problem with research populations not being a good reflection of real-world patients.
My impression is that non-tertiary consultants can be ignorant about asthma, but they can also be more attuned to reality and take a practical approach - hard to tell without seeing them though! My best treatment in hospital as an in-patient (and outpatient in endocrinology) has actually been from non-respiratory specialists, as they're often more open to the idea that they don't know everything about asthma because it's not their area, and can be (not always) more willing to listen to what the patient has to say.
If the consultant is a researcher, you can get some idea of their approach/their clinic's approach by looking up their research papers. It's not perfect as obviously they rarely work alone, but I find in the UK they tend to work with others in the same centre and it can give you an idea of whether they have pet theories or approaches. My centre has a fair few papers from them as a whole group including the nurses, and it's a fair reflection of how they operate (I won't say who they are on here as anyone can read these posts).
Lysistrata -- you have a good point; I haven't thought about it this way before -- that specialists may get closed in in their boxes, but I see that now. This is sad, b.c. there are plenty of research papers out there identifying unknown areas -- difficult to treat asthma, small airways etc. I sometimes point out to "boxed-in" doctors about these reviews, and they roll their eyes and say that I should not be reading research papers as they will make me feel panicky and make me feel worse.
they roll their eyes and say that I should not be reading research papers as they will make me feel panicky and make me feel worse.
Oh, I thought this kind of thing was just a holdover patriarchal thing, but apparently they can be patronising and paternalistic to male patients too! Not the equality I was hoping for...
It would be nice if they realised that they don't have a monopoly on understanding research papers. I literally get paid to (amongst other things) *write* some of these papers in collaboration with experts, including in respiratory. I guess I should tell my clients my patient brain can't handle it.
Isn't this attitude of the specialists discounting asthmatics because they don't tick boxes insulting to the GP's who referred the patient. The GP has done the diagnosis and treated the patient for some time and made the referral because they at the limit of what they can do, so to dismiss on the basis of no wheeze or whatever is to me an insult and showing ignorance.
I think it's reasonable for a consultant to run more in-depth tests than a GP can to double check that asthma is the main/only issue and there's nothing else going on. But I totally agree that it's really disrespectful to other healthcare professionals when consultants are dismissive on flimsy or inaccurate grounds. A GP or nurse may have seen the patient multiple times and know them and how they present much better than a consultant, who may only get snapshots given how the system works. The system isn't their fault, but they could at times be better at remembering that they don't see that much of an individual patient necessarily and others may have a more detailed picture.
I've definitely found that some (not all) consultants can be very dismissive of other doctors, including A&E, because they're 'not respiratory' - even though my consultants have never seen me at my worst and actually may not have been involved much in treating acute asthma for a while, since their roles haven't involved that side of things. A&E's job includes acute asthma and while they don't always get it right, they shouldn't be dismissed because they're not respiratory.
Some consultants (again I realise this isn't all) can also be dismissive of the opinions of non-doctor healthcare professionals (eg nurse specialists or physios). They may pay lip service to the idea of a multi-disciplinary team and praise other members when they agree, but if a team member who isn't a doctor, or is more junior than them, disagrees or has a different view about the patient, they don't necessarily want to listen in my experience (as a patient).
In my experience, it's the asthma nurses who have been the ones with listening skills, be it at the GP surgery or specialist hospital clinic. The major improvements in my care have been down to asthma nurses, only because they have given me time to discuss MY asthma experience. The times I have felt most frustrated involve doctors and consultants. Having said that, I have occasionally seen a doctor who is very good, which is such a joy but the odds of ever seeing them again are 1000-1.
I saw my Prof (head of tertiary team) on a TV show that was tackling difficult diagnoses, involving ordinary people who been left without targeted treatment. A group of experts across various health fields were given the challenge to diagnose and treat these patients. He didn't disappoint- pushing his diagnosis onto a set of symptoms that were clearly not respiratory in nature. It was so revealing and quite an insight into these experts' minds. Believe me, he wasn't alone and I really felt for the volunteer patients; I didn't feel like things had been satisfactorily resolved in some cases. The series was never recommissioned.
That's definitely my experience. I had zero help from my GP when I was diagnosed (given diagnosis over the phone, told to collect an inhaler and spacer from the chemist and use them 'as normal'. When I told him I had never even heard of a spacer and had no idea how to use an inhaler, he said 'Google it'. And that was as helpful as it got!) The asthma nurse at my practice is brilliant, really listens and works with me to help me live as normal a life as possible.
How can they diagnose asthma over the phone? Surely a peak flow reversibility test is required. During lockdown I rang because I was tight chested and knew it was asthma, but I had a full cardio check up including ECG, 2 ultrasound and an MRI because he thought I was having a heart attack!
Sorry, I wasn't very clear - I'd had a face to face consult with a student doctor and locum GP where they asked if I had been tested for asthma. I was sent for further tests at the hospital to confirm asthma/rule out anything else and the results were sent back to my GP surgery - of course, by that time, the locum and student had moved on, so it was my regular doctor (who'd been dismissing me as suffering from anxiety-related breathlessness for months!) who got the results. That was the point at which he rang up and said he was diagnosing me with asthma on the basis of the test results. No support, no advice, no explanation of what an asthma attack was or when I should go to hospital...just 'collect your medication from the chemist and use google if you have any questions'...
Shocking. Not everyone can take "ibuprofen" - I am not allowed due to blood thinners and reflux.
If you are in pain and paracetamol has not helped, then you would think you needed something stronger or if caused my nerve, lots of options for Doctor.
Your chest problems, of course your should be given treatment.
Pred can cause damage overuse - But we all are entitled to breath easy,
It's really awful reading this.i don't know what's gone wrong within our system,in some areas.My GPS are good.
My consultant + team r very good WHEN they actually " hear" what Yr saying.we are not all drama queen's.im q cool,calm and collected at appointments, phone or in person - consequently just tick- box appointments ignoring severity of my issues.i found a couple of emails( which are legal+binding docs) detailing my health problems etc got me the treatment i need, years late + with huge permanent deterioration in lungs+ Airways,unfortunately.it shouldn't be like this
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