Worried for the future of Asthmatics - Asthma UK communi...

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Worried for the future of Asthmatics

42pins
42pins

I'm very concerned about a policy shift within my medical practice which I'm told is actually government driven. I'm asthmatic and have been since childhood, it's no big deal, I manage it pretty well but during the course of my day I invariable need to use my Ventolin inhaler. There's triggers I try to avoid but on balance I generally need one Ventolin inhaler per month through the repeat prescription scheme.

My medical practice have just decided to reduce my ventolin repeat prescription to one inhaler every other month, I'm running out, I've contacted the medical practice but they're asking do I really need another inhaler and is it essential. I'm 73 years old and I'm now having to beg for medication, I'm very worried about the future.

23 Replies

Hi 42pinsI am sorry to hear about the new policy shift at your GP. But I don't understand why you worried....you get 1x inhaler every month and they have reduced your inhaler to one in every month? So how many do you get or have you forgotten to write about it?

I am myself on repeat prescription and get my medication from Boots pharmacy, if I run out on any inhaler I just go to Boots they give me one and get the prescription back from my GP so you should get an inhaler at your pharmacy without problems when you have repeat prescription. I don't even need to go or call my GP to get one.

Itswonderful
Itswonderful in reply to MELNEL

Reduced from one per month to one every other month I believe.

The thinking behind such decisions is because asthmatics shouldn't need to be using their reliever medication more than 3 times a week as it means their asthma isn't controlled but people tend to just rely on it and carry on. However, just because that's the aim doesn't mean that, by restricting ventolin, people automatically get that control by magic.

But basically, you need to have an asthma review really to look at your current preventer medication (which they should be able to do over the phone). It's possible this needs to be changed or increased, which would reduce the need for your ventolin anyway which is what should be happening anyway.

EmmaF91
EmmaF91Community Ambassador

Hi 42pins

The current believe is that if you’re needing 3 doses (6 puffs) of your reliever inhaler a day you’re not controlled and should have an escalation of your preventer medication. If you’re going through a reliever every month then you’re doing roughly 3 doses every day.

A controlled asthmatic has no symptoms, even when they hit known triggers. I suggest you speak to your GP to escalate your maintenance meds so you’re not needing your ventolin so much.

Here is a post which helps point out when meds should be escalated healthunlocked.com/asthmauk... and here are the common options available from GP if they decide to give you an add on (as opposed to just increasing your current preventer inhaler); healthunlocked.com/asthmauk...

Hope this helps

Hi have 2 ventolin inhalers a month with my fostair, and spiriva, my asthma uncontrolled at mo, tried other inhalers been put back on Fostair . Have you tried Spiriva inhaler it's amazing? been on it 2 weeks, it helps me not use my ventolin in morning, can you speak to your asthma nurse for advise

When our daughter was young, and had asthma, the main thrust was that you could use Ventolin as much as you wanted basically. That was back in the eighties, and into the nineties a bit. That was roughly what I expected when asthma became a thing for me some years back, but the understanding and the thinking had changed. I think it became a concern that the death rate among asthmatics crept up due to people using Ventolin and then thinking that was enough, not seeking medical help in a timely fashion, so policy and advice changed. I was surprised how much I had to learn since our daughter was young. So, I fully concur with the responses above. I am surprised it has not been taken up with you sooner, and that the reason has not been explained. I am allowed one Ventolin on prescription every six months, except if I am having an exacerbation, then I may get an additional one.

It is better this way. Changing habits can feel hard, I know, but it works. It can take a bit of time to ind out what works best for you, but it is worth persevering. As others have said, ask for a review, and get your preventers increased. All the best on this journey. By the way I am roughly the same age as you.

Hi All

This is an interesting one...

I am not really sure how surgeries are going to be able to decide which asthmatics they monitor/restrict on salbutamol use.

In my own situation ( and other asthmatics on this forum) I am instructed to take doses of salbutamol before using other medication eg. steroid preventers or some nebulised treatment. In so doing I always get through 2x salbutamol inhalers per month easily but this cannot be viewed as my asthma being out of control. The recommendation to use salbutamol in this way seems to fly in the face of this new ‘guidance’ so who is right??🤷‍♂️🤷‍♂️

So I am not convinced how widespread salbutamol monitoring really is... I have never been questioned about salbutamol use and I know others who don’t seem to have those kinds of issues either??

Medical opinion seems to be divided on this point but it doesn’t help when GPS and Cons are contradicting each other.

The cynic in me might suggest this is yet another money saving smokescreen.

Time will tell I guess...

Take care 😊

I agree regarding the monitoring and blanket implementation of such a policy - and possibly cost saving although actually I suspect it might be a surgery making up that it's a government policy for their own cost saving reasons, rather than it actually being a government policy, if that makes sense! And of course it could also be the surgery trying to follow the sensible "get the preventer right" thinking without actually explaining it.

As you said, some people do need to use more reliever than "should" be used according to guidelines and in these cases it's normally patient-specific and agreed by a doctor (vaguely recently not eg 30 years ago).

I guess the difference is where it's not part of an agreed plan or is a case of a GP saying "oh just use more ventolin" rather than actually trying other preventer options or combinations - or indeed situations where "it's just been that way for years". You did of course say all this....just thinking aloud really for 42pins or anyone else reading!

stones93
stones93 in reply to Pipsqueak77

I agree.... I was told by the bronchiectasis team to take several puffs of salbutamol before doing my chest clearance especially during an exacerbation.Having said that so far I have never had a problem getting the salbutamol. My repeat prescription allows for 2 inhalers every two months, although I only use one , or maybe two, per year. My bronchiectasis rarely gets to the point of needing the salbutamol for chest clearance.

Hi 42pins,Sorry to hear this, just checking you have got preventer medication and had an asthma review and are jot just on ventolin, as that’s what happened to me for years before a pharmacist suggested I go back to my gp and get preventer medication. Glad you’ve got a few replies on this hope they help.

Its better to have a spare. Im a just incase person and carry a salbutamol inhaler everywhere with me but do have one at home too. You probably need a review they shouldn't say you cant have your inhaler at once month without seeing you. If you are worrying about this explain. I think at 73 you've coped well with your chest explain your feelings to drs, if you are anxious it will exacerbate your asthma or flare ups. Stay well

I saw s new doctor to the practice asked how many times I needed my reliever, told me I was not bring looked after and put me on fostair 200/6. Very rarely need my reliever now,.

I’m so sorry , I don’t think these people realise how worried we get and how much just one kind sympathetic medic can help, my doctors pharmacy was so nasty to me trying to get a spare one as advised by the chemists where I collect my stuff that the pharmacist at the town chemists said he’d ring on my behalf. So try again direct to your doctor or an asthma nurse as there are nasty people out there who just seem to think they have the power and right to do what they like. Good luck try again , 👍🏻👍🏻

Hi 42Pins. There is definitely a shift in thinking on Ventolin use, in that it is safer to ensure asthmatics have a good daily preventer medication regime. I have an asthma review every year and at last year's review, my asthma nurse changed one of my maintenance inhalers. The hope is that getting those right, and at the right dose, should allow me to enjoy a symptom free life and have little need for Ventolin as a reliever. Despite changes to my maintenance meds (Fostair, Eklira Genuair & Montelukast) I still rely on my Ventolin. The asthma nurse had adjusted the predicted prescription use to four Ventolin Accuhalers per year. But that has proven to be insufficient and I spoke to my GP about my asthma and once I had convinced him that I take all my maintenance meds as instructed he was happy to adjust my Ventolin prescription so I could have more inhalers over the year.

The only way you're going to ensure you have the Ventolin that you need is to have an asthma review to discuss your medication and explore the possibility of increasing or changing your maintenance meds. Because of the current Covid restrictions you may only secure a telephone consultation, but that should be sufficient to review your asthma meds.

Hope you get things sorted.

It is a worry as a blanket policy because of asthma patient differences . I had this problem, I was called in for an asthma review with a dr I had never met before and told me she was increasing my acuinhaler seretide 250 to 500 to prevent my 2 salbutamol inhaler repeat monthly prescription. I was horrified and insisted I have at least 1 a month. She agreed in the consultation but from leaving her office to the in-house dispensary she had removed the prescription for the salbutamol. This decision base on a 5 min consultation with no physical examination.

I refused to leave the surgery until the salbutamol was prescribed. I then had to go to see an asthma nurse who told me my asthma was out of control. I tried to explain, before I was put on seretide I was most certainly out of control, house bound a lot of the time, but now with the seretide and salbutamol I lead a relatively normal life. I said unfortunately i have very twitchy lungs and need the salbutamol when out in the environment!

Anyway to cut a long story short she insisted I be referred to a consultant, I refused (not going back to weekly 2hr waits for a 5 min consultation) and was referred to a dr on the practice who knows me for a long time. He said it should be a partnership between dr and patient regarding treatment and kept the status quo.

Unfortunately he has since retired and the problem has risen it’s ugly head again. I have been told I will be prescribed Montelukast, again I have refused without a face to face consultation ( I have anxiety panic attacks which I do not want this medication to interfere with) and if that is with a consultant, so be it! I am waiting for lockdown to end and I have received vaccine before I will agree to go near a hospital, especially while I am not out of control. Incidentally since start of pandemic and being at home, I am back on Seretide 250 and 1 inhaler a month. I agree with you it is a worry especially as I have had to endure many medication fads along my vert long journey with asthma, some good, some mediocre but some turned out to be dangerous.

Lysistrata
LysistrataCommunity Ambassador in reply to Loulou9000

Sorry to hear that the good GP retired - it's amazing when you find a doctor who listens and agrees it should be a partnership!

It does sound like doing less than usual during lockdown has improved things for you. I've found the same recently - fewer triggers to set things off. However, if you're getting through an inhaler a month still, it does sound like you might need to tweak your preventer medication. It's good that you're better than before you were on the Seretide, but it is possible for most people with asthma to lead an entirely normal life without symptoms most of the time, and you still have some options to add on besides montelukast. This post has more information about what medication GPs can add: healthunlocked.com/asthmauk...

A phone consultation can still be helpful for this - if the GP or asthma nurse isn't helpful about this on the phone and doesn't listen, they're not likely to be better in person, and there is a lot you can do and discuss on the phone! I have had some really helpful calls with the Asthma UK nurses that were much better than in person consultations with all my notes available. In person they can listen to your chest, yes, but that isn't necessarily helpful if you aren't currently symptomatic or tend not to wheeze. You can still discuss symptoms and they can assess your control over the phone (if peak flow is helpful for you, you can do that at home and tell them how it's been),

At this point there are still things your GP can change so you shouldn't need to wait for a consultant before anything can happen. (Of course if you try various add-ons and they're not working after you've given them some time, a referral may be needed. This post may help - not all of it is relevant but it has a section about referral and medication: healthunlocked.com/asthmauk...)

You may also find it helpful to chat to the Asthma UK nurses. They can discuss what's been happening and your options in a bit more depth as they have more time than is usually possible at the GP. They're available Mon-Fri 9am-5pm on 0300 2225800 or WhatsApp - 07378 606728.

Thank you Lysistrata for your reply I really appreciate it. I will of course consider and be open to trying new treatments. But not from a doctor I have never met before but she feels well qualified to make a snap judgement on my personal asthma all within 5 minutes, where other doctors who I have gone through my personal asthma journey with have failed to do, but know my history and associated problems.

I have in the past become very uncontrolled when previously tweaking and trying new preventers, you name it I’ve tried it. The last I tried a change was to fostair, over 12 months I developed a silent wheeze and reduced lung function so did not understand I was so ill until I collapsed, because I was adjusting my lifestyle to what I could do. My peak flow is problematic it is very low anyway and the more I try to exhale the lower it goes. I have a normal flow of 250 but I am as well as somebody else who can blow 350 + it just is how my lungs behave, it is not a good indicator of my asthma. So I do have a psychological worry of messing about with my medication when what I am taking gives me a good quality of life.

This cutting down salbutamol use is from research regarding asthmatics who died, but were relying on salbutamol only and had not been reviewed by a medical professional in 12 months or greater. So I whole heartedly agree these people need to be identified and managed. But those who take preventer medication, are regularly checked and managed, where is the logic? The assumption all asthmatics can be controlled completely symptom free on medication all of the time is a folly, I and many other asthmatics are testament to that.

If I change my treatment it has to be with my informed consent and I cannot give that in a consultation of 5 minutes where treatment was dictated to me. I was never happy to increase my seretide to 500, I was worried what would be available to me if I had a serious attack, so pleased it is reduced to 250 again.

AsthmaUK_Nurses
AsthmaUK_NursesAdministrator in reply to Loulou9000

Hi Loulou9000, total agree with Lysistrata, why not give us a ring sometime and discuss. I would also reconsider the offer of a referral to a secondary or tertiary centre for your asthma. You might find this page helpful: asthma.org.uk/advice/severe...

You obviously need the ventolin. Unfortunately that need doesn't magically go away just because they give you less ventolin. Explain that you do need it and until they review your medication regarding preventers you will still need it. It takes time for preventers to work and to see what is working and what isn't.

Claire_AUK
Claire_AUKAdministrator

Hi all this is an interesting post and has generated some great points. Ventolin/Salbutamol (Short-Acting Beta Agonists -SABA) use is really important for GP's to monitor in order to pick up those asthmatics that could be at risk of an asthma attack, this forms part of the National Research into Asthma Deaths (NRAD) recommendations. asthma.org.uk/support-us/ca...

I would encourage you all to read the NRAD report

However, SABA shouldn't just be stopped without reviewing and investigating with the person why they are needing extra SABA and this may result in a referral to a specialist asthma clinic.

If anyone is using their SABA 3 or more times per week I would encourage you to contact your GP for a review - this shouldn't result in medication being withdrawn but a different approach and investigation into your asthma management.

Take care all and remember you can always ring us for advice 0300 2225800 M_F 930-445

asthma.org.uk/advice/manage...

👍😊

Elspe
Elspe in reply to Claire_AUK

I just had a review - a telephone chat with a nurse. I don't use any preventers apart from Montelukast and Ventolin and I know I use more Ventolin than 3 a day... My Ventolins had been set to one inhaler every 6 weeks, up till recently. It appears that the practice had looked at that and now I have one inhaler every 4 weeks, which is barely enough. I am to have another review at some distant point - 6 months? I don't get on with any of the inhaled preventers, I seem to have allergy or sensitivity to some of the ingredients.

Claire_AUK
Claire_AUKAdministrator in reply to Elspe

This would definitely warrant you having a referral to a specialist asthma clinic in hospital, you should ask to be referred (if not already) 👍

Around here there seems to be a maximum of 1 asthma nurse per patient. I don't think I've seen a chest specialist since we moved here.

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