Yet again I have had my salbutamol stopped without warning! I have half an inhaler which is supposed to last until mid March. There is no way it will last until then! I have had this stress from my surgery stopping my medication before. Making me have to present my case why this is dangerous for me, only to get it overturned for a few months.
I have just come off phone review from asthma nurse, she was nice enough, but they are really not listening, just staying quiet until they can spout the Nice guidelines!
I wonder if there is any other disease that condones nurses and pharmacists from stopping a medication that can be a life saver without warning? Would it be considered ethical to put a patient at risk because of a blanket guideline?
I have got a reprieve for a few months and agreed to seeing a consultant again. Doing a stupid peak-flow morning and afternoon. I can tell them and have done numerous times, I wake up at night and/or breathless in the morning. I am better practically symptomless in the day, but can have acute attacks that come from nowhere, are reversed with salbutamol within a few minutes and I can then go about my day. They want me to try Montelukast but I don’t want to because I already have underlying anxiety and a nerve condition. Why would I want to try a medication that has these symptoms as possible side effects? I already take seretide 500, monitored by my Dr and have frequent check ups. Insidentely he never stops the medication and will overturn it usually, showing his frustration. He is on holiday so agreed to speak to AN.
I have agreed to have a chest X-ray which they seem to think is perfectly reasonable for me to enter a hospital under pressure from Covid before my vaccination, when I have been emergency admitted for chest infections in the past!
It is rubbish, please don’t quote the reasoning, I know it, I argue my case every time. They say I am severely uncontrolled,? Nonsense, I am able to lead a normal life, hold down a normal job, 15 years ago I could do none of those things!
Sorry for the rant I am so upset, no need to reply, just need to let it out!
How can any medical department justify this treatment of giving such stress and putting their patients at risk due to following a blanket policy and not taking individual differences into consideration.😭
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Loulou9000
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Oh Loulou9000 I am sending a hug! Get that frustration and anger out. You deserve to be listened to and supported. It's not a rant, you're being led on a wild goose chase.
I just went to post a similar problem and saw yours. You are sadly not alone. It's the pleading your case and then it being overturned, then having to go back and do this again which is exhausting. I used to have a great GP and practice who asked me to call up if ever I needed to and I should never delay taking my rescue packs. So I had well controlled asthma and I had great respect for the asthma nurse at the surgery who always listened and was caring.
It's not like that now and I have a battle every time. I lose the words to describe how counterproductive this all this and how it damages the relationship I need and want to have with my healthcare team.
A community pulmonary nurse asked me to call the hospital today and the nurse said it was very serious, asthma can kill, no need to wait again to speak to the GP and the GP cannot refuse an admission prevention measure so I was to be very firm with them that the medication (antibios and steroids) needed be sent through immediately to my pharmacy for delivery. Yet the receptionist just refused. No I don't need to put a request for a doctor to call me back thank you, I have already and only just now spoken to the pulmonary nurse at the hospital who triaged me and asked me to call you urgently and get a rescue pack as an admission prevention measure. Well the doctor needs to talk to you first. The receptionist even tried to pretend it was not allowed as I had never had one or this medication before!? More arguing. Yes, I have, and I am under the respiratory team at the hospital who saw me in October and had to change my medications as I have been deteriorating in the community as consultant informed the GP by letter. They are absolutely aware.
At the previous surgery they were good enough to spot breathing difficulty over the phone so wouldn't drag out the call or argue back and forth. It takes it out of you doing all this and feels silly.
I hope you can keep trying, you come first, keep fighting
Thank you for your kind words 0101 I really appreciate them.
I am calming down, I dropped from 250 normal for me to 150 on the peakflow , so put is on her stupid graph and marked after telephone conversation with Asthma nurse. I am up to 200 now after taking several puffs of my salbutamol.
I really do not know what went wrong with the old working relationship between medical professional and patient? Seems to me that those who know nothing about your personal history can make such sweeping dictatorship judgements and ignore the doctors who should surely be trusted to make clinical judgements! Not Receptionists, not pharmacists or even sorry to say Asthma nurses, who feel it is perfectly safe for me to enter a Covid riddled hospital when I don’t really need to.
You are welcome that's good news, I hope it keeps going up. And I am glad you have a good relationship with the doctor, phew!
It is bizarre, I have less and less respect for those that act like this. I remind myself to try not to let them get to me but at lower moments it catches me by surprise.
Don't really see know what to say. I've never heard of doctors and pharmacys not handing out enough ventolin. When I go out I always have it on me and if I have a bad day I have it on me even in doors. That's how vital it is. I don't believe I've had any side affects of taking Montelukast.I understand of being fine day and bad the next. Doctors don't seem to understand this.
I understand your anxiety about the chest x-ray as I felt the same when I was to go for one in November and I am on the shielding list for persistently uncontrolled asthma. But I can quite honestly say it felt very safe. The x-ray appointments seemed to be very spaced apart, I saw only one other patient in the department. The x-ray took minutes and there were 2 members of staff at a good physical distance wearing PPE. I was in and out in less than 15 minutes. My mum also had to go in December and she had the exact same experience. As for montelukast I have anxiety too and was worried about those side effects but it has been fine except for weird dreams a bit of drowsiness and a bit of blood when blowing my nose. All in all the improvement in my night time symptoms have been worth it.
Thank you so much for this reassuring post. I will go for the chest X-ray. I would like one, it was over 20 years since I had the last one. The Asthma Nurse has written I will go but after vaccination. I really do not want to be bothered with her more than I have to, so I’ll leave it at that for now. She is going to refer to consultant so she is happy.
Sorry that you’re getting stressed with this situ atm
If you’re going through a ventolin a month you will be classed as uncontrolled. Being uncontrolled puts you at an increased risk of having an asthma attack severe enough to need hospital. From the sounds of it in the past they have wanted to escalate your preventer meds to stop your need for so much reliever, then you can get controlled again.
On the add on front, even ventolin carries the side effects of possible increased anxiety, especially if it’s used a lot. And I know a lot of people with underlying anxiety who are completely unaffected by montelukast other than an improvement in their asthma. You may also benefit from a change in preventer - either stronger or a different base (I think this has also been suggested to you before by your GP). Changing inhalers is a pain as it can take up to 8 weeks to fully kick in, but if the result is much better control it’s worth it! And if the change doesn’t work then you try a different one again 😅 (there’s more about the GP add ons here; healthunlocked.com/asthmauk... and like everything if you find that something doesn’t work, or you don’t like the side effects, things can be stopped and you can try something different, or get escalated to hosp care where they have more available to try).
If these don’t work for you, and you are still over relying on your ventolin, you should request a referral to a resp consultant who will be able to look at what’s going on and add on additional (different) meds, and if they can’t get you controlled they’ll send you to a tertiary centre to see an asthma specialist.
I am a severe, uncontrolled asthmatic (different from a severely uncontrollabled asthmatic 😅). I’m under tertiary, on an injection (benra) and long term steroids (kenalog injections) as well as a plethora of other drugs (I’ve tried all the different classes and now only take what helps and doesn’t give massive side effects). In the last year, I had about 6 (I think 😅) hospital admissions - and this was a good year 😅.
I am a known person where control will be limited, however my GP doesn’t like me needing more than 1 vent a month, and even that I often have to ring up for. Even with 2 med teams behind me, I was put onto the ‘1 every 3 months’ regime until I explained the situ to the pharmacy hub and they sorted it with a doc. Had I not been under the other teams they would not have changed it.
Needing ventolin more than 3x a week increases your risk of attack, hospitalisation and potentially death, if you’re using up a ventolin a month that risk increases a lot. The fact you manage to stay home, and I’m assuming avoid steroids, means that on the right meds you should be controlled as that’s the aim for everyone. A tertiary doc would have the same aim as your GP. In fact my tertiary is unhappy with my vent usage, so I’m having a planned admission in May-ish (COVID rates depending) so that they can work out if I am the best I can be control wise, and to do further tests etc.
Do speak to your GP and try to work with them - they are trying to get you controlled! And if you aren’t liking the options they present ask for a referral. Being uncontrolled is not nice, so if there’s a chance to get controlled and off the vent - go for it! 1 extra/change in meds may be enough for you not to have symptoms every day, which I’m sure you’ll really be happy with if that happens! If you aren’t happy to try things out/ask for a referral then I suspect the ventolin issue will be ongoing - it’s a computer thing. They can override it when needed but the computer doesn’t like it as that’s warning them that you need med escalations to get you controlled again. This happens regardless, so you do get caught in a loop - I think it’s either every 3-6 months where I am that I have to call and get it’s sorted 😅
Hope this helps and that you find a solutions that works for you soon!
Thank you EmmaF91 for your detailed reply I will try to take it on board. I really appreciate your time. I just can’t get around this ‘uncontrolled’ reasoning.
In the past I have had home Oxygen bottles, then nebulisers, been very restricted in what I could do, been on long periods of oral steroids, and the horrendous Phyllocontin. Tried numerous steroid based inhalers until being stable on Seretide. I have been taken off Seretide before even when stable for the so called wonder drug ( reality cheaper drug) Fostair and ended up becoming very unwell again for six months until the seretide started working and regained control again .
The last six years I have lead a normal life, held down a full time job, been able to keep up with the best of them, all on Seretide and salbutamol. How can they say I am uncontrolled?
The last A&E visit was four years ago and that was because of my Chest infection induced asthma. 4 hr intravenous and neb treatment sent home and back at work the next day. I am not wheezing all the time like I used to, with phlegm inflamed lungs you didn’t need a stethoscope to hear. I am symptom free most the time, if you hear my lungs you may hear only the very slighted wheeze with a stethoscope in the upper airways due to 56 years of Asthma. But I have twitchy lungs that react to certain things in the environment. I do not get hay fever.
I have never in the past, even in my worst years been told my asthma was uncontrolled. But since this Nice guidelines of restricting salbutamol I am constantly told my asthma is uncontrolled by people not my Dr, because of the amount of salbutamol I take.
I am more controlled than I have ever been taking Seretide with Salbutamol as and when. I have taken salbutamol/Ventolin in syrup, tablet, nebules and inhaler form for 56 years daily. If it was going to kill me I would have thought it would have done so by now. One thing is for sure is that blocking my access to this drug just because it is the latest fad/fashion by the treatment police, will most definitely put me at risk of death if I cannot get an ambulance or fast responder in time.
I am getting tired of this unnecessary stress I am put through every 6 months. It is cruel and I don’t know how those in the medical profession put Asthma patients through this stress, I know I am not the only one. I can’t think of another disease that will ration or withdraw a life saving drug on a whim.
I will see what my Dr says on his return and go to the consultant. If I get no joy with the treatment I will withdraw and just buy salbutamol from abroad expensive but less stress. I have been asthmatic for 56 years, like to think I can contribute to my understanding of my asthma and work with a Dr to get a treatment we both agree with. That is what used to happen until about 6 years or so ago, now asthmatics have no control no say in their treatment and are just dictated to. Very poor!
This is fascinating EmmaF91. I have often been taken off one medicine. Then prompty put back on by another GP months later after a deterioration and them admitting it was on a cost basis. (I couldn't work out why I was apparently randomly switched and didn't seem to get on with fostair when I 'should' have Loulou9000 ). There's a strange thing happening where I'm out of touch with what controlled feels like and I'd like to forget I have this like it was before and I could carry on with life. I've learned a lot about options available and how useful and necessary it is to have the back up of your meds teams. I now just want to find something that works again.
Loulou, I soooo understand your frustration. The NICE Stepwise guide for asthma for escalating treatment is very much based on Ventolin "over use" as the benchmark of uncontrolled asthma. I've just re-read it again and it appears that a full range of meds, including oral steroids is recommended in order to avoid using Ventolin, which they never recommend as a daily staple. GPs & asthma nurses have to stick to this BUT what the NICE have failed to say is that GP/nurses should follow the asthma consultant's recommendations, once a referral has been made. It appears that GP/nurse will keep reverting to the NICE guidelines despite having clearance from a consultant to prescribe Ventolin over & above NICE guidelines.
My consultant has been very clear on many occasions that my sub-type asthma does not respond well to steroids & LABAs so it's OK to use Ventolin daily and have access to other non-guideline treatments. But every now & again I have to repeat the laborious steps of making a GP appointment and getting them to look at my notes in order to secure consultant recommended treatment/prescriptions.
I've had my pharmacist tell me that the GP practice has included a note with my Ventolin prescription, asking me to make an appointment as I'm ordering too much Ventolin. So back to square one. Ironically, I'm using less Ventolin than I have in decades! Frustrating? Definitely.
This is frustrating I am so sorry you get put through this! Especially even with consultant input they are still hell bent on doing their tick box exercise! Are the NHS GP service just employing robots who are not allowed to think for themselves?
Hmm I had hoped me agreeing to see a consultant it would have put an end to this stress. Seems to me it just adds to the stress if even a consultant is overruled as well as Drs and emergency staff!
I need to get to the bottom of this ridiculous practice. I doubt I will stop it, but it may get picked up by somebody who can. Ombudsman and .gov first points of call.
Will do but I guess I’ll get the same NICE guide lines blurbed back at me, but I must try.
I thought the guidelines were around the deaths of asthmatics not known to Medical professionals and getting them controlled, and not reliant on reliever medication only. Not let’s target all asthmatics managed or otherwise, even if under consultant specialists.
I had this similar problem with my gp recently. Last year on November I put salbutamol and fostair for prescription. In my gp the receptionist does it. She refused. . They put fostair and not salbutamol. This made me so angry. The next day I went to seem them face to face. I asked why did you refuse salbutamol. They said you're due late. My asthma nurse and gp said I can get it every 4 months. She booked a telephone consultation with my doctor. Hr issued one salbutamol prescription.
I just can’t believe the truly awful time some of you have. I moan sometimes about my gp but never get treated like this. Get salbutamol whenever I request. Plus nebulas for nebuliser. In fact when I am REALLY bad doctors work incredibly hard to keep me out of hospital. Seeing me every 2-3 days. They know risk of hospital acquired infection is high risk for me and that’s precovid. Biggest problems I have are with receptionists who think they have medical training and also don’t understand data protection and refuse to post anything to me?!
Hi Bevvy - I'm really pleased you said this - it's been very useful for me to read and see what good looks like for others. It is possible. Slightly shocked and impressed you were seen every 2 -3 days! I haven't been seen since by a GP since 2019 (I think). Seemed like a radical move for the consultant to insist I was seen in person last year - it was all Covid safe and very well organised. It was obvious how I was to him on the phone and more so to them all face to face - apparently I was grey and then with facial expression, tone, whether you can can a full sentence out easily, struggling to walk...all this is how I thought symptoms were assessed. They were asking what's normal for me, they didn't know as they hadn't seen me.
I agree, we should be notified, urgently, with enough time to find an alternative, BEFORE our medications are withdrawn. We need a Nationwide 'Patient "right to reply"', each time these decisions are made: some people might be dying, or at least unnecessarily hospitalised, when drugs that could be really effective to a minority of patients, are withdrawn at short notice.
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