I have only suffered from asthma for 11 years (i have post partum asthma that began when my son was born) but i was diagnosed with brittle asthma in 2013 which is very difficult to control.
My treatment regime is max dose fostair (100/6 4 puffs twice per day), cetirizine 1 tabley each day, spiriva 18mcg each day, lanzoprazole (acid reflux makes my asthma worse), a xolair injection 300mg every 4 weeks and obviously salbutamol (asthma consultant tells me to take 2 puffs 4xdaily, gp as and when i need it). I have been getting all medication as required each month for years right up until the ebd of last year. Suddenly my gp seemed to be having problems with sending my presrciption to the chemist each month, at times i have had to sit in reception and refuse to leave without a script as my meds have run out! I have finally resolved issues with most of my medications and am recieving most of them as normal each month but they are refusing to issue ventolin and will not provide me with rescue steroids despite being informed multiple times by the hospital that i need them at all times. I recieved my last ventolin at the beginning of april which ran out 2 weeks ago and now i am having to resort to using my sons inhaler (he has one at school for use there but only the 1 at home) as my gp practice is refusing to issue another ventolin inhaler until the beginning of june at the earliest. Are they actually allowed to refuse me ventolin? And is there anything i can do to actually get the medication that i need? Xx
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karmaqueen84
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I would contact your consultant at the hospital (if you are under one). It sounds like the problem has persisted, though, at least with regard to the steroids. In that instance, the best option might be to change GP surgeries and put a complaint through PALS. Also, might be worth asking the GP for a consultant opinion - if they get direct instructions to give you a certain dose, they shouldn't be giving you something else.
(My GP surgery refused to allow me to stop taking something I'd be told to stop taking until a letter came through from a consultant for a non-asthma issue.)
Have you got a "good" asthma nurse... my asthma nurse would "have" the person that refused to prescribe ventolin to an asthmatic... I would also point out to your doctor's surgery how dangerous and negligent this is as you need it (They will probably make you make an appointment to see the gp)
As for rescue steroids if the consultant says you need them and the gp won't prescribe them then it's for the consultant and gp to take up with each other... a lot of the time the consultant want the doctor's surgery to take over medications but Gps don't want to take responsibility (as prednisolone doesn't cost much I'm gonna assume it's not about cost like it is with other medications)
It's all annoying when in the meantime your the one who is suffering
You can make a complaint to your GP practice. All GP's surgeries must have a complaints procedure and just asking for a copy may be enough to trigger a better review of your medical needs. If necessary make a complaint to your local NHS service which is responsible for all local health services.
You do not need to be aggressive, simply assert the facts. PALS - as mentioned - are very helpful and will I am sure be supportive. I would also ask the GP's surgery why - for what reason - they will not issue ventolin.
Hey there, I really think you need to put in a complaint about this matter. This is disgraceful as leaving you in this situation is not good. Especially as you have 2 x Xolair infusions. That’s a clinical indication of high IGE. I’m very sorry to hear this and I really hope you get sorted
Personally I think you’re situation is dangerous ventolin is a life saver obviously your asthma isn’t well controlled so I would get on to your specialist ASAP and tell him exactly what is going on. I would also put a complaint in as it simply can not be right and it probably means other patients have the same issue. I have problems getting my Fostair and other meds as the computer only allows it to be issued a few day before it’s due to run out which isn’t great if you are going on holiday or working away but I can at least ring up and they can manually override the system.
My GP started doing this in October last year. I had never previouslyneeded emergency treatment. I've now had about 10 trips to A&E and multiple ambulances.
My consultant explained that there was a confidential enquiry into asthma deaths which showed that people who had died from asthma were more likely to be taking lots of ventolin. He thought it had been badly interpreted by some GP surgeries, who restricted access to ventolin without doing anything to improve asthma!!! He also sent a strongly worded letter about refusing to give ventolin to the GP surgery, but it still routinely got refused by the admin staff.
My GP also refused to give steroids after big attacks, and I really suffered between big attacks, and my asthma really deteriorated (I've been off work sick for nearly a month now).
I moved house a month ago and registered with a different GP and they could not be better when it comes to my asthma - the asthma nurse is great and the GPs all seem to know the guidelines.
Is it possible to move to a different surgery? I'd also get your consultant/their secretary to phone your GP and follow up with a letter for your file.
That makes depressing sense that they think prescribing less Ventolin will fix it! No engagement of brain there.
I was impressed that my surgery did actually do what they should -prescription refused because they had issued 2 inhalers 2 weeks before (this happens with me more often than is ideal but mostly they just issue it). Got the duty dr on phone who said if you have used 2 in 2 weeks you seriously need to come in as that's worrying! Explained the situation (under tertiary centre, recent admission) and she still wanted to know about follow up after admission which is completely correct. I said that i had follow-up with my asthma nurse so she agreed to prescribe more Ventolin once she had an explanation for the excessive use, or at least knew I was being followed up.
That is how to handle it - if concerned with use follow up don't stop Ventolin! Karmaqueen I agree with others here that a new surgery may be needed if possible.
That is interesting! I remember the same debate quite clearly when our daughter was young. She has asthma. Then it was clearly stated that if you need to use ventolin a lot it is an indicator of needing more help and you should not be using so much ventolin. These days they seem to have replaced, on the whole, the use of nebulisers with repeated doses of ventolin. It was never even then that the medication ‘caused’ death, more that it might make you too complaisant, and that could be risky. So is this a ‘new’ finding, or the same old?
In any way I too would add my voice to all the rest that you need to take action now!
I have heard that foistair is cheaper ,I just asked a locum doc if I can go back on siradupla and she said yes ,fostair made sleeping worse palpitations worse and horrible taste and restless feeling all the time .Its serious and you have brittle asthma which is worse .Wel, if anything happens you sue them .Drs know so little about any area they do 3 months rotations in my husbands hospital on any illness untill they specialise .My hub took his mum down and doc actually asked him what would he prescribe and went with that .Hope you get sorted and soon .x🤗😇
Consider submitting your concerns via registered delivery mail to your GP and include a clear statement of precisely what you require as a solution. You might also consider mentioning who you will be sending a copy of the letter to if you don’t get a written reply within a certain time-scale. For example BMC, Regional Health Authority etc. At the end of the day, it comes down to whether your GP has a genuine defendable reason for not meeting your medication requirements, so best to establish that before putting anything in writing.
Although the research was confidential the findings are not. Both the full report on asthma deaths and the summary can be seen and downloaded from the Royal college of physicians website. It makes interesting reading.
email your MP and Matt Hancock its not the time to be without all self managing meds with the pressure on the NHS at the moment. You could also call heart and lung foundation with your concerns,
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