It concerns me when I read up the plans to change to dry powder inhalers (DPIs) that the patient's voice and experience seems not to be included in the discussion. I am all for being more environmentally friendly, but at what cost to at least some patients?
1. In 2019 I was swapped from Symbicort, a DPI, to Fostair, an MDI as I was (and am) very prone to developing oral thrush. It was thought it would be better for me, especially as I can take it with a spacer (as I do consistently). Before that both our local very good pharmacist and the GP had been conceerned how frequently I used oral Daktarin to manage thrush, as it is not intended for long term use. Thus the swap was on the basis of my health.
2. Like many others, I have recently been swapped from Ventolin to Salamol, and like so many others found it wanting. I don't generally use Ventolin that often, but through the winter months my use goes up significantlyas I get breathless walking in the cold, in spite of other precautions. I have also found that I cough far more often in the night after I have been out for a walk when it is cold. For these situations I have found Ventolin invaluable as I can feel after 10-15 minutes thatbreathlessness easing. With Salamol I have not had the same experience - it seems to take longer. Thus I have become even more reluctant to go for walks if I have to rely on Salamol if the need arises. I did once try using Salamol before going out (just once so far) and that worked better as it had longer to take effect, but if I do that every time I would really increase my salbutamol use. Is that sensible. I know I need to experiment further.
I do get fed up being told all the time that the inhalers are 'the same'. That includes users who get on fine with Salamol. I get even more fed up with the relatively few papers on this I have read that while talking about eithics of swapping patients over don't seem to offer any space for the experience of patients.
I am hoping that Lung + Asthma will put forward the patients/users experiences. At present all those papers make me feel ignored. What do others feel aabout this? Any thoughts?
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Wheezycat
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Hi Wheezycat. I totally agree. It’s all fair and good scientists busying themselves researching adverse effects on the environment. By all means let us do what is necessary to protect the environment but not at my expense!
Call me selfish, but my life is important to me. Having had one life threatening experience with asthma I am more than keen to avoid another. I have now found a regimen that suits me. Yes my carbon footprint may have increased a little bit through the inhalers I use, but it has decreased somewhat in that I have not been on holiday recently.
I think patient experience here is key. Somehow, it feels to me, to be unethical to alter a patients medication for non medical reasons.
As I write, I am trying to think of other conditions where patients have had their medication changed to protect the environment- none come to mind. It makes me think that this is yet another example of asthma not being treated as a potentially life threatening illness.
On a personal note - yes I have tried dry powder inhalers. Did they work for me? Yes, when I was well. When I was unwell - the time you need them most - no. I did not have the power to get the medication where it was needed - not all of it at any rate. Most of it sat at the back of my tongue.
Which brings me to another point. I understand the main concern is the propellant within the inhaler. Now, call me facetious, but don’t we inhale that? I would have thought a greater concern would be the plastic. Why can’t we just get replacement canisters? Why do I get a new Spivira Respimat each month when the device can be used 3x?
On a moral note, I think it is totally wrong that environmental factors have a higher priority than quality of life, that cost comes before effectiveness, that research data comes before patient experience and that everyone’s mental health is important, unless of course you have asthma.
I agree with all this - but also wanted to say you should now be able to ask your GP to prescribe just the canisters for Spiriva. It took some pushing but I did it! I would like to see a reusable 'holder' for reliever inhalers; I don't know why those can't be reused.
I think some of the propellant does escape hence the environmental concerns - but as someone pointed out on another thread, even if you don't care about the individual, the environmental cost of poorly controlled asthma is probably higher than being on an inhaler that actually works. And I agree on the morals of it - I'm all for protecting the environment, but that shouldn't be the priority in this case ahead of getting someone medication that works for them.
I think the guidance for GPs etc is supposed to be to start with dry powder first, then if the patient is ok with it it's fine, and if they're not then switch as needed to what suits the patient. And they're not meant to switch medication purely for environmental reasons if there are differences to the patient, or prioritise that over what works for someone. However, I don't know how well that message is actually being communicated, and how well it's understood about practical differences between different inhaler types. Some healthcare professionals are not especially well educated on inhalers in general, and a study a few years ago found that a worryingly high number don't know how to use them - which means they can't show patients how, and probably don't understand the differences for users.
I guess what really annoys me is that I never see anything about the environmental cost of aerosol propellants in other products which are not essential - and which can trigger asthma! Maybe there's already something around this I haven't seen, or maybe those other propellants have a different effect (they're certainly worse for my personal environment!) But I object to asthma inhalers being a focus when it feels like people are still free to spray massive amounts of deodorant and air freshener around (and make me need to use my inhaler)!
Hear, hear!!!! I am not on Spiriva, but why not reuse the holders for Fostair, or any other? (there is the counter of course....., but if the manufacturer thought about it I am sure there could be an answer to that.) I currently have a huge amount of holders here that I hate just throwing away, or taking it to the pharmacy for them just to throw away. I do take the canisters to them.
I am also totally with you regarding aerosols, and I would happily add sundry other unnecessary things that are for sale that also damage the environment, like air fresheners and scented candles, but nothing is done about that. I could go on almost endlessly.
Thank you for your long response. Much appreciated! Like you I think the patient experience is so important! Having read up a little about it it mainly seems to be included as a 'patients don't like it' rather than 'for some it just doesn't work'. Earlier I looked at the NICE guidelines (below) and they are not quite so hardline as some other articles seem to be. What annoys me in particular is that very genuine concerns are not even referred to. I am thinking of yours that you can't use DPIs when unwell, or at least not to full benefit, or mine that my very limited experience so far suggests they (Salamol) are more sluggish so it puts me off going for walks as the relief from salbutamol seems not to happen. I am doing what I can to reduce my carbon footprint as much as I can, though far from perfectly, but this is different as you say. I wonder why service user views are not taken into account in a consistent way?
I’ve been on Spiriva for just over 6 months, on consultant’s instructions. When they got the letter, a GP phoned to explain that it was a reusable device, and that he’d set up one repeat for the whole thing, to be requested every 6 months, and another for refill cartridges for in between - I started my second device last week. Do I just have a very good surgery?
Incidentally, the reusable vs throwaway device is also an issue with diabetes. I only got a reusable pen for my insulin when someone ordered cartridges by mistake and asked if I’d be willing to use them. Turns out, not only is it greener, it’s a much smoother delivery, so definitely better - and the latest version of the pen (which I’m asking the diabetic nurse for next week!) links to your phone and records dose and time. How about something similar for asthma that records what you’ve had and tells you how many doses you’ve got left? - Spiriva’s the first I’ve had that shows doses, but it still won’t tell you you’ve forgotten to take it!
Excellent idea about counters. I read a research paper some time ago (American) where they found that a big percentage of people were throwing away the blue inhaler with doses remaining while another big percentage of people who presented at A&E had been using an empty one! The recommendation was that all rescue inhalers should have a counter on them. As far as I could find out that recommendation was implemented. Shame we can’t do the same here.
I think refillable devices would help a lot. My reusable insulin pens are worth adding the hi-tech stuff, because they’re in use for a couple of years at least. Disposable pens don’t come equipped. The same logic would apply to refillable inhalers. There’s absolutely no reason we shouldn’t have long lasting, smart holders, with cartridges supplied separately - we just need someone to develop one. Both greener and more convenient, with extra functionality!
Correct me if I'm wrong, but I thought the move to generic inhalers was due to cost to the NHS, which I think is a good thing if they work but the patient should be able to switch back if they don't work. As for MDI's and DPI's, I prefer the DPI's because I think for me they work better, plus I don't like the gas in the MDI's, this started with the Fostair Nexthaler and there was some resistance when I asked for the ventolin to be changed to the Accuhaler because of the increased cost.
It seems it is cheaper for NHS to prescribe MDIs than DPIs, so these proposed changes will be more exxpensive for the NHS. You may find below article interesting.
strangely my experience is the opposite of the information in the article, I was told the DPI was more expensive and I also find them better to use and more effective! Perhaps the costs have dropped since I started to use them (between 5-10 years ago, time flys😂)
Yes, that is what I tried to say, that DPIs are more expensive. In spite ot that there is a push to change people from MDIs. which are cheaper, to DPIs because of environmental concerns. If you are doing well on your DPI this should not affect you at all.
You are right about patient experience not being taken into account. The NHS is under pressure to lower its carbon footprint. like all big organisations & inhalers are an easy win.
I’m not sure where you heard that pMDIs contribute so much greenhouse gas to the atmosphere.
Globally pMDIs contribute less than 0.1% of tge total from industry ( mines like coal mines the Govt are opening) etc.
as someone else commented the plastics and other processes in the total lifecycle ( from production to disposal) of Dry Powder Devices contribute more to the pollution of the environment ( terrestrial and Marine) than do the pMDI inhalers.
Finally most of us who are involved with treating people with asthma are very concerned that patients needs and wishes are not being prioritised.
I’m in full agreement with Wheezycat, but there was talk here about the changes from MDI to DPI being due to cost.
Sometime ago my GP had told me that while cost was always a factor, the change is being driven by environmental concerns about MDIs. Being somewhat sceptical, I looked up a number of research articles.
The 13% figure comes from this document:
The environmental impact of inhalers for asthma: A green challenge and a golden opportunity
Quote from the Abstract:
“The propellants in metered-dose inhalers (MDIs) are powerful greenhouse gases, which account for approximately 13% of the NHS's carbon footprint related to the delivery of care. Most MDI use is in salbutamol relievers in patients with poorly controlled disease. The UK lags behind Europe in this regard, with greater reliance on salbutamol MDI and correspondingly greater greenhouse gas emissions, roughly treble that of our European neighbours.” ….
Alex Wilkinson, Ashley Woodcock First published: 31 October 2021 The British Journal of Clinical Pharmacology
As a patient, I would like to see some sort of automated feedback system that could collate a significant increase in prescriptions for Salbutamol &/or Pred following a change from MDIs to DPIs & flag up any issues to their asthma nurse or doctor. The system could also invite patients to leave their own feedback on their new inhaler.
If correct, these data suggest that messing around with preventers is not the best way to reduce emissions, particularly if changing preventers does result in poorer control and therefore higher salbutamol MDI use. (I hope no one is planning to change us to salbutamol DPI...I can't use those when I need them!)
Plus if most of the emissions come from salbutamol MDI used by poorly controlled asthmatics, and we lag behind most of the rest of Europe on this...maybe that's because our record in the UK for asthma deaths and attacks isn't great? I'd be interested to see how emissions from inhaler use relate to asthma mortality rates. I think we're currently 6th worst in Europe for all age groups for asthma deaths, and worst in Europe for child asthma deaths and attacks (even though 9/10 child asthma deaths and about 2/3rds of overall asthma deaths should be preventable).
If the main driver of emissions from inhalers is salbutamol MDI use, then the solution for both patients and the environment is to *improve asthma care*. I realise that's not the easiest thing, but it would be great if they could work towards that and acknowledge it will also help the environmental aspect. (I realise individual doctors, other healthcare professionals, and charities like ALUK already are trying, but there seem to be a lot of systemic barriers).
Doc told me they were trying to get away from CFC inhalers re environment concerns, but afraid neither suited me so now on Flixotide which doesn’t give me asthma like others did. Have only had to use Ventolin once since. So I use it at little as poss, do as much as I can to keep down irritants at home etc. But as the environment affects us all, I too hope they come up with greener alternatives soon.
I was swapped from Ventolin to Salamol a number of years ago with no warning from my GP surgery. The Salamol was not nearly as good as the Ventolin so I asked to be switched back. This has been done with no problem so I've been using Ventolin again for over 4 years. I hope they don't force us to only use Salamol. I honestly think that hospital admissions/a&e visits would increase if that happened. Don't get me started on then having to increase prednisolone use and the effects of that long term. I unfortunately don't qualify for biological therapy despite having severe asthma.
I don't go on holiday abroad (humid air or cold air can trigger a bad asthma attack). So I don't fly so I'm not contributing regarding carbon in that way.
I've been switched to relvar eliptica from fostair which has improved my asthma so far, will see what happens when the pollen season starts. It's also improved my overall peak flow over the last few months.
Another thing that annoys me is that Dr's including consultants say peak flow reduces before an asthma attack. This doesn't apply to me, I start getting a tight chest and sometimes cough, my lungs then develop into a mucous producing factory and only then does my peak flow drop. A bit late!!
We live every day with asthma and its effects, experts by experience but we aren't consulted on anything to do with decision making and asthma care.
Thank you for your comments. I am new to Salamol, and I know for a fact it is not an improvement, but possibly I can manage it, although I amd far from sure. I really haven't used it enough yet to be sure.
I know some people's pf doesn't go down before an attack. There are people on here who have exactly that experience. I have certainly heard of it. Also, if I get affected if out on a walk, say, I don't test my peakflow. My first concern is to use some salbutamol, and probably sit down for rest and recovery. I do know with virus infections and such my peakflow tends to be a good indicator. But that's me, not everyone else.
Ah yes I don't take my peak flow monitor for a walk either. Aerochamber and rescue inhaler are far more important. Sudden attacks aren't fun.
Virus infections, colds etc then my pf will drop. If I'm triggered by perfume, a roast dinner cooking my pf doesn't drop beforehand. I wonder if others have this kind of thing happen. Pf dropping depends on the trigger.
It would be useful surely for Dr's to take note of this kind of thing.
See we all quite reasonably think that taking a peak flow monitor out with you on a walk and checking sounds a bit silly, especially if peak flow isn't the best indicator for you (I can understand why a friend takes hers to work, because her peak flow is an accurate indicator but she doesn't perceive symptoms well so she has to check).
BUT I had a previous consultant (asthma specialist too) who told me that I should never take reliever ever without checking my peak flow to see if I needed it, and I was to ignore my symptoms and not take it if the peak flow was ok. Also that I wasn't to get medical help at all if it was still above 50% best, no matter what, even if I couldn't talk properly or found it hard to move off my chair. (I suppose I should be glad he didn't use predicted, given that there's about 180ml between my actual best and my predicted - best is much higher, which he did accept).
My peak flow drops somewhat but not loads in an attack; for me it's more about how it's responding to treatment. As I said on another post, I've had severe attacks with dodgy blood gases and my peak flow was still above 50% best. The few times it wasn't above 50% best were actually not as bad attacks for me.
My GP at the time was not impressed with this advice from the consultant. She said 'how does he think reliever works? You don't go around taking your peak flow every time! Please just take it when you need it.'
I now thankfully don't see this guy. I see his former registrar instead though, whose approach is that even though his team have checked my peak flow technique many times and it's fine, it only counts if I do it in front of him so nothing I do at home counts - plus they don't seem to have accepted my personal best.
At this point I'd accept a happy medium and to actually be listened to about what's a good indicator for me! Eg as I said above, I've noticed a pattern of reducing response to reliever and the response lasting less and less time before an attack.
I'm less sure about whether different triggers affect my peak flow differently. However it definitely does drop with my mango/rose etc triggers, quite a bit and then improves with treatment. I can't discuss this with my consultant because the moment I mention anything scent-based he says it's VCD not asthma. I don't believe this is right because the onset is a bit too slow, it makes my peak flow drop which is unusual for me, and it responds well to salbutamol. If I had the chance I would explain these triggers - they're odd because they're really specific (cheap extract of rose, mango etc doesn't do anything), they act like allergies (each exposure is worse) but I don't get any typical allergic symptoms, just asthma.
I feel I've gone a bit off-topic/repeating old consultant rants, sorry!
Neither do I, but it's meant to be the best available (tertiary centre)! With all the latest gadgets. It feels as if they're so firmly set on what should be happening and what I ought to be like, they've lost touch with reality a bit (and with the scientific literature - I know from work that I might not be the most common type but I do exist as an asthmatic, even without eosinophils). I generally get the impression my experience or opinion as a patient isn't at all relevant to my care.
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