So I recently had to see a new respiratory consultant. I had lung function tests before the appointment. I have been really unwell recently, using both prednisone and Anti biotics. This appointment is one month post infection. I am still not completely better and really quite symptomatic. I have the lung function tests They also do pre and post ventolin tests.
Then I have the appointment. The consultant starts off with, well your lung function looks normal for your age, sex, etc. Although there is nearly a 15% difference pre and post Ventolin. So then I say I am nowhere near normal and can show my home spirometry. And although my readings for that day at home are not identical to the hospital ones, they are absolutely in the same ball park. I then show him the results for the week before I got sick, in which I have stella spirometry and he can see the big difference and believes me!!! It now means that I am being recommended for Tezspire, which may not be a cure, may shorten the 2 to 3 month recovery from an exacerbation.
I use a smart one spirometer by Mir. It actually had to be prescribed. I would so recommend anyone who has massively changing values to have their own at home and discuss which one to use with their consultant. It is an investment ie mine was about 160GBP as I don't think the NHS will cover this, and there are different models on the market. It has made such a difference with this new doctor. Obviouly I am quite nerdy about keeping results and measuring, so it might not be for everyone. I suppose the obvious point is that if I had just told the doctor this was the case, he would not have believed me, but being able to show the difference with statistics was somehow more believable. I sometimes think reading the posts here that many people struggle with being believed by their doctors.
Very happy xmas to everyone on the boards
R
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risabel59
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When I was at a tertiary hospital, readings taken at home were very important to them. It made life much easier, as they quickly escalated me.
The secondary hospital where I am, will not accept results from anywhere else, be it another hospital, at home etc. So they repeat everything in their specialist lab. Most irritating.
It's now normal to ask patients with hypertension to monitor their blood pressure at home, and advances in diabetic monitoring means that patients can digitally monitor their blood sugar levels. I know we're trusted with peak flow monitoring, but it would be beneficial for us to have spirometry too, if only for more complex cases. Hospital teams rely too much on snapshot test results that rarely tell the full story.
It's good to hear that you have an enlightened respiratory team.
I really support this idea, at least in theory. Asthma is so variable that it's important to show the patterns and that's not possible with just in clinic testing.
Unfortunately you do need a consultant on board with it. And anyone trying it should be sure they are doing it right and ask for help if they're not sure. My attempt was disastrous and made everything worse for me because no one showed me how to do it and there wasn't any training.so I was doing it wrong. The respiratory physiologist taught me how but it was too late as the tertiary consultant had decided I wasn't capable.
I know I can learn how to do it with training - I'm currently doing a study with an electronic meter which has a training mode so I used that to practise. My original home one didn't have that.
My consultant then decided, instead of just helping me to do it, that I wasn't capable of any home monitoring, not even on an ordinary manual home peak flow, and nothing I do at home should be trusted or believed. He refuses to look at any information or charts I show him from home. He also doesn't trust me or perhaps any patient with self management or judgement, even though this is an important part of asthma and every patient should learn how their asthma behaves and when to get help.
I actually think he's probably like this to some degree with everyone based on others I know who see him, but he keeps writing on my letters that my home peak flow is unreliable. Others in the team are fine with my technique, but he says it doesn't count unless he says so. He also decided I was doing it wrong even when I got exactly the same results with my way as his way, and they were consistent between blows.
So some of us are not trusted with even peak flow. I fully agree that home measurements should be done as it's valuable data that's more useful than snapshots in clinic which don't show the whole picture - and can also show someone's best result, which for me is much better than predicted.
But for it to work, I think it does need at least a semi open mind on the part of healthcare professionals and a willingness to work with the patient. I'm glad your new consultant seems to have those qualities.
Apologies for the rant - it's just very frustrating to feel as if you have no agency and aren't even thought capable of recording your own data. I don't feel there's much point changing because I get followed round by my notes and being atypical is just difficult even in tertiary care. It doesn't help that I don't respond to pred which is still used for counting an exacerbation as severe (I need an admission basically for it to count but the notes are not always that helpful and my consultant often decides I didn't need it and I was just demanding treatment).
I'll stop moaning now 😂 just a sore topic but I feel strongly that this should be a partnership between doctors and patients and we should be supported to collect home data because they can't be with us all the time.
Really pleased you're being recommended for Tezspire though Risabel - I hope it works well for you. And happy Xmas!
Good morning Lysistrata 👋 The more I read about your consultant the more dreadful he sounds. I had one like that once (at the Brompton would you believe!) Very patriarchal & highly regarded by those patients who fawned over him, but he refused to listen to dissenting points of view & had no time for me at all. Actually I blame him for the collapse in my lung health during those years. I don’t respond to pred either but he just didn’t get it. Once he retired, the new consultant immediately got me onto biologics and, asthma-wise anyway, I haven’t looked back. Can you really not go to another hospital? It’s so essential to have confidence in those caring for us 🥰
Morning Janedivney! Yes I can well believe you had one like that at the Brompton - I used to go there and I think I saw more than one consultant who fitted that description!
I stopped going because back then I was complex but not as bad as I became later and they couldn't have made it more clear that they felt I was wasting their time. Plus the particular consultant I was seeing, who shares his name with a city in the north, had decided I wasn't putting any effort into physio so he wasn't going to make any effort for me (the physio strongly denied that, said she could see I was trying and that she wished he'd asked her before saying any such thing).
I'm really glad you have a better consultant now and have got more on top of things, but so frustrating to have to deal with people like that when your health is affected.
At the moment I'm kind of in limbo - working from home has improved my asthma just enough to reduce admissions but not enough to control it. Which is good, but because I'm not taking pred for all the flares I do have (because it doesn't help), means biologics won't happen. I do have to credit my consultant now with getting me off pred and giving me home nebs, even if his attitude to the nebs was confusing! But I could do without his attitude in general, and the way he orders tests without discussing them.
They are good about getting me into 'hot clinic' if I ask, but then I find they do nothing and don't understand variability. A couple of the asthma nurses are great, but they are very limited because my consultant won't let them do much. Others less so...
I think if I got to the point of feeling I was eligible for biologics and they weren't budging I might have to change something. At the moment it doesn't feel as if it would change anything, I'm not needing to get off pred thankfully, and I can't bear to start again with anyone else and have to prove I have asthma again, after my past experiences.
I did have one great consultant without a massive ego - not technically an asthma consultant but he was much better with my asthma than the ones who are asthma specialists! However, he felt I would be better off in a tertiary centre. He is great but not sure about others in that clinic and I don't think they can offer biologics so there doesn't seem much point trying to see him again sadly.
That is so interesting. I’ve been diagnosed asthmatic for 10 years. Only ever had spirometry whilst well controlled and subsequently have a respiratory consultant questioning whether I have asthma. Currently recovering from an exacerbation which required 2 courses of steroids with a reducing dose tagged onto the end of the second course.
Risabel59. You don't say if you had one course of prednisone/antibiotics or more. Invariably I find myself having to have two courses of them before a exacerbation subsides.
As for consultants etc not believing or trusting patients, often I find that is normal. Changing doctors can be problematic, it's almost a monthly thing with me as I never see the same doctor twice in a row! Some doctors are pretty good at trusting patients own recordings, I've just recently asked for some of my GP records and was surprised that a fairly lengthy printout of BP measurements I showed him were actually copied into my records. That said there are others who just couldn't care. A few years back my GP wanted to change my meds but at that time I was waiting to see a consultant at Forth Valley Royal Hospital, who, via his staff below him, had previously suggested putting me on a biological drug and had put me on the waiting list for pulmonary rehab. 18 months later I managed to get a 'consultation' with him. As soon as I got in the consulting room he hit me with ' your GP has written to me about this drug, I don't know why he's written you wouldn't be suitable for it!' Despite everything I said regarding my asthma he brushed it aside and said its my weight. Don't get me wrong I am obese and I know it but no matter what I do I can't lose it now. (I even went on a NHS weight management course, told me I wasn't eating enough and I put a stone on!) Long and short he wrote to my GP saying I didn't have Asthma and discharged me from the respiratory care. You should have seen my GP's reaction. Another 18 months on I did go on a pulmonary rehab course and half way through I was asked if I had a nebuliser at home. When I replied no, I was told that I would have one in the next couple of days!
I recently had a bout of pneumonia with infection markers being 200. The first doctor I seen suggested, after waiting 14 hours to see him, that I go home and come back if it gets worse. I was in hospital for nearly a fortnight!
So answering your statement, sometimes patients struggle with being believed by their doctors....maybe that should be 'sometimes there are doctors who aren't fit to be in medicine in the first place', but unfortunately there are and they can make decisions without listening to their patients.
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And happy Xmas!
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