Hi. Feeling upset after seeing consultant after a ten week wait with unmanaged asthma following chest infection. I’m on maximum steroid inhaler as well as spirivia , montelukast, fexofenadine, nasal spray. He Basically told me I don’t have asthma and won’t give me any more treatment despite me still unmanaged needing salbutamol x 8 a day.
I am thinking of going privately and maybe complaining to the hospital.
can I ask is this a typical appointment:
Didn’t ask to see peak flow chart
Didn’t discuss my triggers or how I’ve been not managing in life
Very Briefly discussed symptoms and was shocked when I said I don’t produce mucus with my daily and nightly asthma caugh - seemed to take this a sign I do not have asthma
Because my spirometry / Fen results were good he said it isn’t asthma . My asthma was bad that day being breathless walking to hospital without inhalers due to the test.
Chest X-ray showed new markings in bottom right lung- his response “I’m not a radiographer so I can’t say what that is”
Told me I don’t have allergic asthma because my blood results didn’t show I did (I told him I would be very unwell without fexofenadine , montelukast and steroid nasal spray and that dust/ pollen/ cat fur are my main cause of asthma attacks and daily SOB so his test must be wrong
didnt discuss with me potentially type of asthma I have
at the end of the meeting he told me he can’t give me any further medication other than prednisone which would be dangerous for me.
I asked him about having a biological history response- “who told you about that!?” I said i have researched and this is the next step as I am walking around in amber zone and asthma is life threatening, so I need more medication and you are sending me away unmanaged. He said he will do more tests first (ct scan and effort lung tests) but he doesn’t think it will show anything it’s more to reassure me.
Lastly I pulled out my weeks of peak flow chart and said- please can you look at this does this show asthma? He then said “oh I didn’t know you had this, yes it does look like asthma But you are still on maximum treatment so can’t give you anything else. You’re way off needing biologics and all your results are all good.”
I asked him what’s my plan then? He didn’t give me any advice or reassurance on what to do now while I’m u managed, no asthma plan, no sign posting to asthma nurse and even said at one point he may not see me again.
Thankyou for reading. I thought it important to highlight what is going on in terms of bad practice.
is there guidelines on what to expect from a consultant?
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LRLR
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I wouldn't be happy with that either! Whatever is going on, he doesn't seem to be willing to listen or help, and is contradicting himself a lot. He also doesn't seem to understand asthma too well - I've never seen 'wet vs dry cough' used to diagnose asthma, probably because it's totally normal not to produce mucus with an asthma cough!! A peak flow chart is much more relevant.
Also, he might not be a radiologist but then shouldn't there be a report from a radiologist who has read your X-ray?? I'm pretty sure the radiologists read everything and then provide their interpretation. So was there a system failure with the report not being available to the consultant (not impossible), or has he just not looked at the report? It seems very unhelpful of him simply to dismiss it on the basis he doesn't know (I would want to say 'so find out what it is and whether it's relevant then'!)
Uncontrolled on maximum treatment does not sound like 'way off needing biologics'! Though the eligibility does depend on how many documented exacerbations you've had in the last year ( defined as either a course of oral steroids, or A&E/admission). Plus of course any other markers to decide which biologic is most suitable - but sounds like your medication may be making those blood markers look ok. That doesn't mean there are no options though.
Was this a specialist asthma consultant and was the clinic a severe asthma one? I'm wondering if you've seen a general respiratory consultant who doesn't understand asthma. Specialist asthma ones are *usually* better as that's their focus, though not always immune to failing to listen or getting fixated on some types of asthma or particular markers of asthma.
I would hope they would know more than this consultant seems to though! (Be aware that consultant profiles will often claim they know all about every single respiratory disease, but if they're head of the lung cancer or interstitial lung disease service or have special interests in non-asthma areas, chances are they aren't asthma specialists and can often have some shocking misconceptions about it, in my experience.)
I'm not sure if there are guidelines for what the appt should be like. You may find it helpful though to read this post about what you'd expect to happen at a severe asthma clinic. Even if yours wasn't in this kind of clinic, it could give you an idea of how poorly controlled asthma should be assessed: healthunlocked.com/asthmalu...
As you probably know, FENO can be normal and you can still have asthma. It's just one indicator and can also lag behind even for people who do get a rise in it (I have a friend whose FENO will be normal at the point of needing hospital then shoot up when she's recovering from the attack.)
Spirometry is a one-off snapshot. While it's obviously going to be normal if you're feeling ok, you weren't feeling ok. BUT I'd be interested to know what 'normal' was being defined as by this consultant. For starters, it will be measured against predicted values and your actual best value might be higher, especially if you were sporty or played wind/brass or sang a lot. If normal is within 80% of predicted best and your actual best is higher, it can look normal when it isn't - BUT to be fair to a doctor trying to interpret, it is tricky without knowing if your best actually is higher. Some people I know have been given home spirometers to use to give a better picture and get more information - I wonder if that's an option for you? It does need to be over a reasonable amount of time though.
I realise you may not know what he was referring to, but they often look to see if you have obstruction or not, since asthma is an 'obstructive airway disease'. This is based on the ratio between FVC (forced vital capacity) and FEV1 (forced expiratory volume at one second ie how much you can blow out in a second.) They're supposed to calculate the ratio that is appropriate to someone your age, sex, and height, but often just end up using 70% as the cut-off (ie you have obstruction if the FEV1 number is less than 70% of the FVC number). That's often too low for younger, taller people, who actually would be obstructed if the number were at a higher percentage. So that can look like you have no obstruction when you do.
You might want to give the asthma nurses a call during the week and chat it through to see what your options are now. 0300 2225800 Monday-Friday 9am-5pm, message on WhatsApp 07999 377 775 or email us at helpline@asthmaandlung.org.uk Definitely mention your peak flow chart too so they have the whole picture.
If you do have the funds to go private, it could be an option - but you'd probably need to do some research to check you are getting someone who really does know about asthma. You don't want to pay to see the same version of this consultant at the private hospital (especially since the same people often do both NHS and private.)
This goes beyond disappointment! Unfortunately, every now and again, a specialist proves themselves to be anything but special.
I agree with everything Lysistrata has written. I've seen specialists in various disciplines and some of them have been quite mad, eccentric, wrong (totally) or disinterested. I stress some, as others have been fantastic.
You can ask to see a different consultant and I would do some research on those who are available in your respiratory clinic or severe asthma clinic first. You can either go through your GP or the hospital PALS team to request that second opinion. Definitely have a chat about your experience, and how you want to proceed, with the Asthma UK helpline on 0300 222 5800, they'll be able to help you get the best out of your request.
Hospital Trust websites will have consultant information for you to check out under "respiratory medicine" and you can then Google them to find out further information about their specialisms.
I wonder if he was actually a consultant or perhaps a junior dr??? You've been treat very badly.id continue with yr peak flow diary,with notes of how u feel,asthma etc.U could complain via pals.or wait for Yr ct and nx apppointment+ hopefully see someone else.i hope u have a gd gp to support you
Thank you so much for your input this has helped so much and I actually feel relived now that and validated. Asthma is new to me (symptoms started 4 years ago age 41) until then no lung probs at all not even much allergies! so it’s been a lot to learn.
I am going to follow up in writing and ask to be seen again , thanks so much for contact of PALS. I was really hoping to be given an ‘off label’ treatment eg add in another inhaler such as fostair 100 or something similar just to calm things down a bit.
I have googled the consultant I saw it says he is a consultant respiratory physician accredited in respiratory medicine, and he is the clinical lead for severe asthma at my hospital!! His thesis was on the role of airway
To give credit- he did mention he understands the lung tests do not always represent what is happening, but then contradicted this by saying the lung tests are more reliable and valid then my peak flow data! Lysistrata was very astute picking up on how he contradicted himself as yes this was a theme of the consultation.
Thanks everyone I do feel better
LysistrataAdministratorCommunity Ambassador• in reply toLRLR
Glad it helped! See below for comments re the spirometry. I wish I were more shocked by the consultant apparently being an asthma specialist but I have heard some absolute doozies from asthma specialists over time which are frankly dangerous. Usually because they have some very fixed ideas about what is or isn't asthma and won't budge from them if someone doesn't fit in the box.
It also really sounds like he wasn't even concentrating properly and kind of half-assing it which kind of cancels out specialist knowledge to some extent if he's not really engaging with the situation.
It might be worth looking up who else is in that clinic, seeing if anyone other than him has some reasonable knowledge, and asking if you can see them instead. Sometimes they may be better in reality even if not asthma experts. The best consultant I've seen was technically not an asthma expert but he actually listened (sadly he felt he had to refer me to an asthma expert, who doesn't seem to understand what variability in asthma is.).
Thankyou. I will do this I have had a bit of a research. Yes someone else said that to me it sounds like he couldn’t be bothered. He literally ushered me out the door, I asked him about biologics in the waiting room! Which was embarrassing but couldn’t believe he ushered me out with no plan or meds or anything.
Also thankyou for the info regarding testing as this is new for me.
I am very fit female and 5.7ft my best peak flow is 580/590. Have gone to the gym 25years and prior to new diagnosis lungs were healthy and strong, so maybe this effects readings?
My readings were this-
Feno-20
vc-4.09 105%
fvc 424 109%
Fev1 -3.39 108%
Ratio 83
I aim to try to interpret myself but if anyone can shed any light on these I would be grateful. Dr said these were good readings that don’t show asthma.
LysistrataAdministratorCommunity Ambassador• in reply toLRLR
Well your peak flow is at about 132% of predicted for age, sex and height (I calculated your predicted with an online calculator based on what you said.) it seems quite likely that your best spirometry may also be better than predicted.
Your FEV1/FVC ratio is just over the predicted limit for your age/height/sex (around 81%). Though I am confused about where they get 83% from, as if you divide 3.39 (FEV1l by 4.24 (FVC, I added a decimal point to make them the same unit), you get 80%.
It's hard to know without a figure to use, but it's quite possible these readings aren't as good as they look. Which I feel is something they should take into account, even if they can't be sure what your best is. If your actual best is higher then it would probably affect the ratio too.
The issue with tests Vs spirometry is that the spirometry is literally a snapshot. Peak flow as a one off is also a snapshot, but if you keep readings on a chart like you have then it's actually showing a pattern and should be taken into account. Peak flow variability is one way of diagnosing asthma.
I would be interested in seeing what your spirometry is like after you take Ventolin. There is a test for this but unfortunately they will generally refuse to do the post-Ventolin part if your initial numbers are ok as they don't think it's needed.
Which I think is incredibly short-sighted and stupid as a policy given the points above about how people can have higher than normal best, so actually you could still get more than 15% reversibility (a cutoff for asthma) if you have high best numbers. I could get 40% reversibility in peak flow going from 80% of my predicted to 80% of my actual best (no idea with spirometry, I have the added disadvantage that I'm rubbish at doing spirometry well when my lungs are playing up).
I wonder if there's any way to make them do a reversibility test with both parts regardless of the initial results? (You'd have to stop your inhalers again of course).
Thank you so much for this, you are so kind to give me your time. I am going to add all this into my letter of problems which happened and actions going foward. I will definitely be pointing out my peak flow is 132% of personal best and that I want my test results re-evaluating based on this information which they do not hold, because I wasn’t asked.
I can’t thankyou enough.
LysistrataAdministratorCommunity Ambassador• in reply toLRLR
You're very welcome - best of luck and let us know how you get on! I saw from a reply below you found another option at the same hospital so 🤞🤞 he's better. (Not that it applies here, and you may know this but never believe anyone telling you female doctors listen more than men. It's definitely still an individual and not a gender-based thing. I've never experienced a difference personally plus had a female consultant I saw for too long who pretended to listen and then wrote I was going to hospital for attention and needed a psychologist.)
First thing is yes, I had a number of "specialists" send me away with... Asthma, Not Asthma, heart not heart "theories" (as thats what they are) .... it was when I got to the Severe asthma team after being a right pain in the ass and initially they wanted to do all the tests again; I'd been in and out of tests for 7-8 years at that point and wasn't too enthused by wanting to do them all again... 6 weeks later I saw someone else (who happened to be the head of respiratory for the trust) and he pretty much diagnosed my issue on the spot "but wanted to run some tests to confirm it"
What I would say is do not go private... it will cost you a fortune and any treatment then has to be private too ....the NHS is under no obligation to obey/believe any private diagnosis and so unless they diagnose you with it won't believe it.... unless you have really good private health insurance or deep pockets (like really deep)
I have an inhaler that privately is over £100 per month, another inhaler that gets stolen and used on the black market no idea what the cost is
Antibiotics as a prophylactic I have 4x boxes a month at £20 per box to the NHS (God knows what they would be privately)
So what I'm saying is if you do get diagnosed with something privately, a months worth of treatment could be a few hundred quid a month.
And that's after all the tests and scans ... at one point I was on an exercise bike hooked up to, a blood pressure monitor, pulse ox, heart rate monitor, gas exchange mask all being fed into a computer and there where 3 medical people in the room ..... I can't imaging that was a cheap "test"
Thank you for the advice. Well I just researched a private consultant with a well known private hospital and he also works in my local hospital! So I will ask to see him.
I have also read the guidelines for suspected sever asthma and how it is diagnosed- and defined, I have all three out of the four statements which you only need one of to qualify.
Guidelines also state how people with suspected asthma should be referred to a service that specialises in managing severe asthma so that the reasons for their asthma and their treatment can be reviewed.
sorry it won’t let me paste the link- here is a section from it
Nice.org.uk
Quality statement 5
Rationale
People with suspected severe asthma need specialist assessment to confirm a diagnosis of severe asthma. Specialist assessment is important to revisit adherence to treatment, exclude other causes of persistent symptoms and ensure the most appropriate treatment. Specialist care can help to improve asthma control, prevent asthma attacks and reduce harmful long-term dependence on oral corticosteroids.
I fear you and I may have the same doctor as my specialist has been absolutely abysmal.
Diagnosed me with several non-asthma conditions then never ordered the tests to check if he was right.
Manage to get the tests a year later a voila, still asthma!
Complaints was also a wash as they took 3 months longer than they should have and the report they came back with mentioned diagnoses I never had! AND that they were waiting for test results for tests that I had 6 months ago.
All that to say, you are not alone and please ask for a second opinion at another trust if you can.
Thankyou sorry to hear you’ve been through this. It’s absolutely disgusting that we are not alone and this is happening so much. It seems very common sense basic things are missed. Asthma nurses /professionals at lung uk are amazing - it’s ashame they couldn’t train these consultants who don’t listen to us.
The hospitals own staff were telling me to make a formal complaint last time I was there and Asthma/Lung UK told me to get ready for legal action! It is dire
What is the maximum steroid inhaler you are on?My various hospitals disagree on what is the maximum, and do not mind going off the relevant rules.
My local hospital presently have me on alvesco 640 plus fostair mart.
At my hospital you need to be with an asthma nurse plus a consultant as my consultant is more general respiratory than asthma. The asthma nurses are great and do all the day to day stuff.
i am on alvesco 640. This is what he referred to as the maximum steroid and can’t give me anything else. I actually asked if he could add in something else like fostair 100 (got this idea off this forum maybe it was you on another thread! 😊) however he said no.
I am also on spirivia resmat, powder formoteral (to go with alvesco) plus fexofenadine , montelukast and streroid nasal spray .
All these medicines help me a lot in different ways but just not enough for full control. Peak flow drops in amber zone a few times a week and really breathless on effort yesterday needed x8 puffs salbutamol to get breath back.
Thanks for this it gives me hope there is something else I could have! I will keep trying.
The alvesco 640 is good for me. My trouble with it, is that for me it is slow in response, it can take many days to get control of a major attack, and it sometimes does not get there. Taking Fostair mart as well, which I love, gets me control back much faster.
If I am taking salbutamol regularly eight times a day then it starts to lose its effectiveness.
My consultant's reasoning is that either I am on just alvesco 640 plus lots of prednisone and in and out of hospital or I am on alvesco 640 plus fostair mart and not in hospital and much less prednisone. For him, any route, which involves less prednisone wins. The tertiary hospital which he sends my notes to, do not agree with this approach as they say alvesco 640 is systemic and I should not be on more than alvesco 320, but they do not give an alternative approach, which is unhelpful.
To get on biologics for me is difficult, as my consultant really thinks asthma is about high eosonophils and high feno. While my eosonophils are low and my feno, when in green is 25 or so, rising to 45, when in green going towards amber. Never tested feno when in full amber or red as routine asthma appointments do not coincide with asthma attacks. Asthma UK say I should be asking for tezspire, when I next see consultant in March and I qualify for that as it is not about high eosonophils. Not convinced of my chances, though I technically qualify.
Apart from seeking other means of medical help, I suggest you consider other factors which may make asthma or asthma-like symptoms worsen e.g. GERD, anxiety and depression. And discuss with your doctors about it. Treating the conditions mentioned could reduce the severity of asthma and asthma-like symptoms.
Of course you need to keep using your current medications in the meantime, until you get further advice from healthcare professionals.
Thankyou for this. I will look into it. Asthma nurses said there can be a correspondence with cycle/ hormones/age/ perimenopause which I hadn’t considered, so logging that now. My allergies have definitely got worse as I’m sneezing and coughing when the sob comes on which is new.
Below just for your reference, some research suggest birth control pill, if not contraindicated, is helpful if hormonal factor is a concern for female asthmatics. Some patient experience increased severity of asthma symptoms every month during perimentural period.
Also some studies showed vitamin D supplement is also helpful if asthmatics are vitamin D deficient. It is worth testing your serum level.
Hope the above information can give u some ideas about managing your condition.
I am a senior asthmatic, struggling with the disease for many years and always research at internet to find solution.
I'm an ex-nurse and was also a Radiology administrator. Normal practice is for doctors to ask a radiologist for an opinion if they're not sure of what they are seeing on a scan.
A straightforward complaint, asking for a second opinion isn't dangerous territory. No one should accept a poor experience when it comes to their health care. This is an article explaining the inside reaction to complaints and raising concerns, theguardian.com/healthcare-...
I have a family member who works in PALS and they think people don't complain enough or soon enough.
Why a complaint? By all means ask for a second opinion and raise any concerns. In my experience, raising a complaint just because people are able to do so puts barriers up as people become defensive. Personally, I would state my case and the outcome that I seek . If nothing happens, I would then raise a complaint.
Fair enough, but it's important to express dissatisfaction and state expectations weren't met after waiting so long for this pivotal appointment. Being too polite can give the bureaucrats the option to dismiss or delay next steps - it's an art form. Definitely recommend discussing the matter with the Asthma UK helpline nurses, who can assist in how to secure a second opinion.
Hi. I read your post and was so angry on your behalf. Everything I would have said has been mentioned above. It is just not acceptable and a shame that you have to fight for an x ray and to see someone who knows what he is doing! A while ago I went to a&e struggling to breath, wheezy, crackling. I have had asthma for nearly 40 years. It is well controlled mostly now except when I have a chest infection. I saw the triage nurse who took my blood pressure ( nothing else) and said you can either wait for 5 hrs or go home. We waited and when the Dr listened to my chest she said ‘ oh dear, you are going nowhere’. She gave me nebules, antibiotics etc and I got better but my point is a lot of nhs workers just want to keep it moving so doing your own homework is essential. Once in a while there is a shining star. I was on prednisolone for many years and luckily had no side effects but most drs want you to have an emergency supply just in case because it works. Another thought and this is wrong- but when my husband takes me I am treated much better than if I go alone. I hope you get the treatment you need and feel better soon. 💖
I am going through something similar from having a bad chest infection last November.
After 5 gp visits and asthma nurse, I have ended up going private to see a respiratory consultant. I did my research and chose one who had an interest in asthma.
He has asked me to do a 4 week peak flow monitor. If it half’s in volume, then straight to see a medical professional.
I also now have a spacer which does seem to have helped.
I also have blocked sinuses which doesn’t help.
I am going for a lung function test, seeing him again in 4 weeks to look at peak flow and he has also mentioned the link between acid reflux and asthma too, acid reflux can also affect the sinuses.
Acid reflux can spill over into the airways causing asthma to get worse and sinuses to get worse apparently.
I went private, consultant diagnosed me in the first consultation, from my previous GP blood tests, so they do have access to your NHS records, if they want it, I had to pay for new full allergy bloods and a ct scan, prednisone and his time as you'd expect, but my very efficient diagnosis came from previous NHS test results x N
Given the extreme sensitivity of NHS medical records, they are not automatically shared with anyone.
However, according to the NHS, you can ask for your medical record to be shared.
It states you must do this with the organisation that holds your information - for example, contacting your GP surgery or the hospital where you had treatment.
How long it will take for your records to be shared is dependent on each situation.
Although, it’s important to note a request for your medical records to be shared can actually be denied! The most common reason being that it could cause harm or distress to the patient.’
If your GP supplied the private consultant with a referral letter then it is possible that he/she passed on the results of your tests?
My wife sees a private cardiologist who is also a NHS consultant at the hospital where she had a pacemaker fitted. When we go to see him, we have to relay to him the results of her most recent pacing check because of the Chinese Wall that exists between NHS and private work.
I'm sorry you're struggling, and empathise totally with your situation, i know late onset severe asthma is life changing. You sound like you've had a good experience with support from your gp, can you ask for a second opinion consultant referral?? to a different hospital perhaps?? I've had the opposite experience, non existent gp care, but good consultant care, I paid for private diagnosis because I knew I wasn't going to survive the 12 month nhs respiratory waiting list, without some intervention. I'm 'lucky' in that I have eosinophilic so once in the room with a private respiratory expert i was easily diagnosed from gp bloods, and put onto recovery/ management meds, physio, etc. It is a long journey, I'm almost 4 years since symptoms first started, having jumped through alot of hoops and done everything asked with meds available, i was finally referred onto the biologic road on 29th Jan. I understand completely how difficult navigating the system is, particularly when severely unwell, i would encourage seeking private help if you are able to, if only to give some answers and help you manage better whilst navigating the NHS. Lots of good wishes x N
Whilst I really sympathise with your situation ( been there myself) and applaud your research into severe asthma, a severe asthma diagnosis takes a long time, a lot of perseverance and a lot of tests to obtain.
It took me ( and others I know) many years to get an official diagnosis and the corresponding treatment and tests to deal with severe asthma.
I guess what I am trying to say is that there are other differential diagnosis that the cons is honour bound to explore alongside - and you might have to just ‘go with the flow’ a little, explore other possibilities and medication regimes before instantly suggesting a biologic.
Hang in there ( even though it’s difficult) and be pro-active with the tests, the cons and the team and eventually you will get the correct diagnosis.
This is interesting. I have had asthma 4-5 years now so it does feel like a long time already! lol
I think it’s ok to instantly suggest anything to our consultants, that is what they’re there for-we are not the specialist so we do not know and have freedom to suggest what we want, They are there to teach us if we instantly suggest a treatment that isn’t yet suitable- and they should reply professionally , calmly and accurately. (I do actually very nearly meet the criteria for biologics when I have researched today. )
My gps had already diagnosed me with severe asthma due to the fact it is so hard to control , level of medication and being under the consultant. Three of them had said this to me. Allergic asthma is beyond obvious too due to symptoms and medication relieving them.
To be honest it’s not about if it’s officially called severe asthma / difficult to control asthma or any of that, I just wanted the basic care from a specialist. To be able to discuss my peak flow, discuss types of asthma it could be (adult onset/allergic) and treatment because I am in amber zone for 7months and very unwell for ten weeks. I wanted an action plan and reassurance of what to do and a follow up.
What was upsetting was the consultant told me I do not have asthma because my incomprehensive lung function tests taken that day. He then retracted this when he saw my peak flow chart for 5 seconds before ushering me out the door.
I understand there is a testing pathway to be done and other conditions investigated, and that’s all fine, but to treat me the way I was treated was not ok. They are honour bound to follow guidelines and deliver a standard of care , not tell a patient they don’t have asthma because of 1 spirometers test, and not looking at any of the evidence infront of them.
I’m glad you finally got your diagnosis and horrified it took so long for you to get treatment. this is not right and just because this is what happens doesn’t make it ok.
Not sure how accurate this is, I understand secondary care will do tests that confirm severe asthma (and theses tests don’t always provide for some poor people) but to be honest-all doctors can look at what illnesses are and say by definition what they are. Maybe not be an official diagnosis but I won’t split hairs about it. They can still treat as of it is what it looks like without official diagnosis.
They can do this by looking at the quality document below. GPs and last asthma nurse at hospital have all said what they have said and that’s good enough for me. I’m on medication that is used for severe asthma and not controlled. Happy for them to rule out other random conditions as that’s what has to happen, but really we all hust need access to our medicines in a timely manner. That’s the most important thing.
Ohh! I see I understand your post now! So you’re saying secondary consultants can’t give you biologics? I am obviously not medical and haven’t been given any info from my consultant so don’t know the pathway.
So you’re saying the relevance of official diagnosis is to get into third care and get those treatments? Apologies I didn’t understand.
I’ve had so many professionals say it looks like severe asthma, you’re on severe asthma treatment, torture now on severe asthma clinic ect that for me it is severe asthma.. however for the sake of treatment pathways I suppose I am classed as undiagnosed or suspected severe asthma?
Yep… biologics are very costly drugs and can only be prescribed by certain asthma clinics. So it doesn’t really matter what your GP thinks.. it’s all about the tests and views of the severe asthma cons. That’s why it can take so long and as I said earlier - you just have to ‘go with the flow’ as there are certain criteria that have to be met which all takes time.
I have not publicly accused a doctor of malpractice. There are no names nor areas on my posts.
It’s is vital and important we not only raise awareness of the neglect that can happen to us in consultations but also seek support from each other on this supportive forum.
I absolutely do not need to ask myself if I am a difficult patient- this is nothing to do with my post and completely off topic with no relevance to the theme we are all discussing.
Furthermore; it is very logical. NHS guidelines specify a standard of care that we all should expect, if it is not given then we have a right to raise, challenge and share with each other.
When this negligence happens to us when we are already unwell, is very damaging emotionally and mentally let alone physically with lack of medicines, due to not being effectively diagnosed and treated as we all deserve and in-line with nhs guidelines. These times we need support and care, not off topic and challenging comments like the ones you have posted.
I am not wanting to split hairs; however, In your post above, you have used the words ‘negligence’ and emotional and physical damage.
Legal Definition. malpractice. noun. mal·prac·tice ˌmal-ˈprak-təs. : negligence, misconduct, lack of ordinary skill, or a breach of duty in the performance of a professional service (as in medicine) resulting in injury or loss.
From the little that I know about biological treatments and drugs, the process of being deemed suitable for such treatment is long and arduous: not least, because the biological treatment for an asthmatic patient is reported to cost the NHS in excess of £10k per patient per year. (Or if you are a reader of a certain tabloid over £30k per patient per year).
Rather than post advice from European journals it is better to look for NHS sources that refer to NICE guidance. NICE will have evaluated the cost/benefit for this treatment plus it will have outlined the pathways needed to come to a clinical decision.
However, as LRLR has said, no names or hospitals were used at any point. I still have absolutely no idea where she lives or which hospital this is or even which it *could* be. Complaining to a hospital via PALS about poor care in a specific instance (or even just 'considering' complaining as in the original post) is not the same thing as rushing off to the GMC or the papers or publicly accusing a specific doctor of malpractice.
I didn't get any sense LRLR was intending to go and pursue anyone for malpractice legally, even if she has used certain words in reply to you. And if she *had* named anyone I would have addressed that as a moderator.
I also don't see the original post or the reply just above as being specifically about biologics, nor about LRLR demanding them when she isn't eligible and then complaining when she isn't given them immediately.
Rather, the complaint is about a doctor who isn't listening properly or paying attention and doesn't even want to engage in helping LRLR further - though she has acknowledged he reluctantly offered further testing at least. It's reasonable to want your doctor to listen properly, enlist the help of colleagues where needed (eg in reading the X-ray, rather than just saying he can't help with it) and then outline next steps.
Whether or not biologics are an option, the main issue raised was the whole 'shrug well I don't know and there's nothing I can do' attitude (obviously *not* a direct quote). I read that as the standard of care LRLR is referring to - not a refusal to provide biologics.
They were mentioned, yes, but not as the main issue - and it's entirely reasonable for people with poorly controlled asthma to wonder about them, even if they're not yet an option. I'd also suggest it's the job of healthcare professionals to listen when someone enquires about them and then explain further about how and when they'd be considered, rather than just cutting off the discussion as 'pfft you don't need those' and leaving someone to find out on their own.
I don't think we'd be reading this post at all had the consultant listened, acknowledged the issues, then explained the path forward would include further testing to confirm severe asthma, address any other issues, and explained what would need to happen for biologics to be considered.
This is a support forum and people are allowed to ask for support and comment that they don't feel their care was that great, without being jumped on for making accusations they weren't making. Of course others are allowed to disagree with them too and offer alternative points of view or clarifications, but respectfully, as Pipsqueak has done above.
Thankyou so much Lysistrata for this intelligent reply and your support. I appreciate this so much. You are very good at what must be a difficult role keeping us safe in this forum.
Without being rude, I haven’t read past the first few lines of L8’s post because I’m too tired and unwell and also having just worked a long shift , I don’t need any extra stress so I won’t reply.
Pip-squeak is very respectful and her posts are very useful, even if I maybe at first disagreed with one or two things (apologies) and probably misunderstood some things , I got there in the end!
Definitions of terms used in this quality statement
Severe asthma
When a diagnosis of asthma is confirmed and comorbidities have been addressed, severe asthma is defined as asthma that required treatment with a high-dose inhaled corticosteroid and long-acting beta2 agonists (LABA) or leukotriene modifier/theophylline for the previous year or systemic corticosteroids for 50% or more of the previous year to prevent it from becoming 'uncontrolled' (that is, controlled asthma that worsens on tapering of corticosteroids) or that remains 'uncontrolled' despite this therapy. 'Uncontrolled' is defined as at least 1 of the following:
Poor symptom control: Asthma Control Questionnaire consistently greater than or equal to 1.5 or Asthma Control Test less than 20.
Frequent severe exacerbations: 2 or more bursts of systemic corticosteroids (greater than or equal to 3 days each) in the previous year.
Serious exacerbations: at least 1 hospitalisation, ICU stay or mechanical ventilation in the previous year.
Airflow limitation: after appropriate bronchodilator withhold FEV1 less than 80% predicted (in the face of reduced FEV1/FVC defined as less than the lower limit of normal).
[European Respiratory Society/American Thoracic Society International guidelines on definition, evaluation and treatment of severe asthma]
Very sorry to hear this. I understand the feeling. I've also experienced some battles with my hospital but finally making progress after a year of difficulty. At one point I used the PALS system to make a complaint and I think that helped my case. I would recommend contacting them to step in and you might find that makes a big difference. Good luck
I am so sorry that you have had to put up with this. You deserve so much better. I have had asthma for 75 years. It started when I was 3 and I am now 78. It has been a lifelong nuisance. In that time I have met the full range of doctors from those who have managed to gain a medical qualification despite knowing diddley squat about asthma to the shining stars and on one occasion for me - the life savers.
Could you go back to your GP and tell them what has happened? You are entitled to a second opinion I think.
I had a similar experience to yours where the consultant was convinced that I wasn't taking the medication. Another GP in the practice referred me to a consultant at a different hospital. He took me seriously and really helped me.
I really hope that you get the treatment that you deserve. Don't give in and don't try and do it all yourself.
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Hay fever 
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