Nebulizers

[Gilly100]

In my region in England nebulizers have been stopped for home use and therefore ventolin nebules are not prescribed . I bought one years ago as the doctor said it would be advisable to have one and I was prescribed the nebules. I am just wondering if the policy is the same in other areas of the UK?

[teddyd]

I have a nebuliser which my consultant arranged. I am in Scotland and not heard anything about home use being withdrawn. I really hope they dont go down that road, it has stopped numerous hospitals admissions.

[Pipsqueak77]

Hi Gilly100

I think that the use of home nebulisers by asthmatics is massively frowned upon now. National guidelines say that asthmatics should be seeking additional help if they have an attack that requires the use of a nebuliser.

That said… I have a home nebuliser which I have had for many years and still have my nebules prescribed by my GP. My cons doesn’t like it at all… but so far hasn’t stopped my prescriptions. I did actually think about voluntarily giving it up myself but my last hospital visit was such a nightmare that I definitely won’t be giving it up now without a fight!

They basically gave me b2b ipratropium /salb nebs for 5hrs alongside iv hydrocortisone etc.. and then discharged me and said ‘carry on at home’! So there lies the problem really… they instruct you to do one thing and then completely ignore their own advice and do something else when it suits them.

So apologies for the slight rant.. but I think this is something that you probably need to discuss with your hosp team… the official advice does not seem that straight forward at all!

Good Luck 😊

[looneyno1 in reply to Pipsqueak77]

Hi, Do you mind what me asking where about you are as if this going to be implemented I would like to find out and alternate method. In my area they ‘treat and street’ which is neb and steroids send you home and follow up with gp. GP never has any appointments so it’s treat at home. So where are you then? I am talking about the severe asthmatics the ones who’s asthma doesn’t fit in the boxes.

[Pipsqueak77 in reply to looneyno1]

Hi looneyno1

No prob…😊

I am in the south west of England.

I attend a local and tertiary hosp for my asthma and use biologics alongside all the usual meds! I also have a nebuliser at home which I use for saline and salbutamol, however as I mentioned I have had this for many years….. I am sure that they would not let me have one now even though I am diagnosed with severe asthma.

I have not been informed of any changes to the neb rules locally…. I just think that they don’t like asthmatics having nebs at all so probably are making excuses instead of explaining the reasoning behind it.

Which is all well and good as long as they stick to their own rules… which is where part of the problem lies really.

You need to discuss your circumstances with your own cons really or hosp team.

Take care😊👍

[looneyno1 in reply to Pipsqueak77]

Thanks. I’m south west and they frown upon everything going to A& E, staying at home, calling an Ambulance. These days I do what I need to help me and that’s it. The guidelines change almost daily! As long as I am confident in my usage and know the side effects etc keep up with my appointments then all is well.

Keep safe

[Pipsqueak77 in reply to looneyno1]

Yes…. Agree!! 😊

[Lysistrata Administrator Community Ambassador in reply to Pipsqueak77]

Agreed re them ignoring their own advice! While I think home nebulisers can be dangerous if used the wrong way, it isn't always patients doing that. I've definitely come across some really bad advice given to people about home nebs, of the variety of 'go home and use your neb and stop bothering us'. A more sensible and balanced view which I agreed with was that they would prefer me to go home only when I wasn't needing to take nebs regularly, even though I had access to them at home. Sadly this wasn't my home hospital, I was admitted on a trip to see a friend.

My tertiary consultant told me within 10 seconds of meeting him the first time that I was never ever getting home nebs because they're dangerous - I hadn't even asked or suggested it! A few years later he decided to let me have salbutamol nebs with no rules because 'you're sensible and your asthma isn't at all dangerous'. I mean ok then?? And let's ignore the fact even mild asthma can be dangerous... He didn't put any of this in writing oddly enough...

I had to make up my own safety rules and I don't sit and neb endlessly, but will get help if needed. I do find it's helpful to have one in my specific case, particularly for certain triggers where I need to jump on the response quickly and it's hard to get the medication in with just a spacer. I would say for people with non-severe asthma, or who are very unstable and severe, they are generally not a great idea if they're going to delay care. For severe asthma it should be on a case by case basis. My GP prescribes them and seems ok with it though I haven't really discussed specifically with them.

I haven't heard about any rules re no home nebs here in London - hopefully not something they're going to push as again, case by case basis! Like you said below Pipsqueak, I do wonder if this is a case of individual doctors deciding they don't like people having them as a blanket rule and blaming it on the 'rules'.

[Gilly100 in reply to Lysistrata]

Hi Lysistrata, Both my GP and consultant stated that National guidelines say that asthmatics should be seeking additional help if they have an attack that requires the use of a nebuliser. I only used it when necessary but it was very reassuring to have it there, especially in those long night time hours. And, if it didn't give relief, you know what your next step is. It can prevent hospital admissions, considering these days the health service is in such dire straits and people are going to A&E as they can't get to see a doctor and also ambulance waiting times can be hours.

[Celie1 in reply to Lysistrata]

Hi Lysistrata,

Can I just ask why your consultant said that about your asthma ‘not being at all dangerous’! What did he mean by this? Does he mean you shouldn’t seek help at A&E? Or that an asthma attack will just sort itself out with a few puffs of an inhaler?

That seems a very confusing statement for him to make, given that we’re ‘told’ to follow procedures and seek medical help for asthma attacks 🤷🏻‍♀️because they can be life threatening.

Although I must say from a personal standpoint, my latest experience at A&E made my asthma attack feel very insignificant in the big scheme of things.

[Lysistrata Administrator Community Ambassador in reply to Celie1]

He has very odd ideas, including narrow and rigid views about asthma. Basically if FENO/eosinophils aren't raised he considers it isn't really asthma and isn't dangerous. This is not supported by the scientific literature (I've had to read a lot of it for work).

What is also not supported is his use of FENO to decide on discharge safety, and him trying to say that A&E always overtreat. The National Review of Asthma Deaths actually says delay in seeking emergency care and ongoing undertreatment of asthma are often significant factors in asthma deaths.

My friend who sees him and has had a lot of ITU admissions for asthma pushed him on this point when he seemed to be suggesting she didn't need to go to A&E because it probably wasn't asthma. In the end he said no do go I guess. Didn't write any of that down, just like he didn't write down what he said to me. I didn't have the confidence to push after getting a lot of this kind of stuff from drs who see me in clinic but not while acute in resus and decide if I'm fine 2 weeks later then I must have just gone to hospital for fun. It doesn't help that they often do the discharge summaries on how you are on the ward post treatment, not on how you are when you arrive at A&E.

He also wrote in a letter that I had no evidence of obstruction during acute attacks. This is based on literally one time when he did spirometry and some fancy new diagnostic toy post-treatment - the spirometry when I felt great and was about to go home! I told him this in my next appointment and he seemed to acknowledge it but then wrote that in the letter and didn't mention the spirometry I'd done at that clinic visit which was much worse.

I would ignore him on this - I do, but it messes with my head!

[Gilly100 in reply to Pipsqueak77]

Hi, My GP (when you saw them) stopped prescribing nebules for that reason and that was also the response of my consultant when I queried it. As well as asthma, which I have had since childhood, I also have Acute Broncho-pulmonary Aspergillosis (an allergy to mould and fungi), mild bronchiectasis and Vocal Cord Dysfunction where the vocal cords go into spasm restricting breathing and sometimes it is difficult to see which one it is! Onwards and upwards! Thanks for your good wishes and good luck to you!

[Spikedog66]

Im in North east of England haven't stopped them here that Im aware of. They frowned upon as its said you can wait too long for medical intervention trying to treat yourself?? I'd rather see to myself if possible, they tell us the NHS overstretched then why withdraw home nebulisers and cause more A&E visits. Saline nebulisers seem to be a favourite at the moment in my area, I dont know about elsewhere.

[Welshtoffee]

I live in the midlands.I purchased a home nebuliser. a few years ago. After a bad asthma flare up GP said that I needed to be on nebulisers .to go into hospital or at home . I asked him what he would do. He said stay at home. I had two different types of nebulisers and had to take one every two hours. I went into see the GP every one/two days to check how I was. I felt it worked well. My consultant also didn't like that I had a home nebuliser and thought it was dangerous if you were ill you needed to go into hospital. Luckily my asthma has been better controlled and u haven't needed to use one for the last 7;years or so 🤞

[Emily-G]

I’m in north east Scotland, I have home nebs, if I need more than 4 x in a day I have to go in. Mine is just for the trickiest seasons or sudden attacks. Hope you can get your nebule supply sorted

[pink123floyd]

Hi Gilly I have a nebilizer which i had now for many yrs after my 1st one was recalled i bought another and take this 3 or 4 times a day depending on my symphtoms and have not been told to stop using mine im in the north west of England i would ask for a second opinion hope you get answers does sound funny that your doctor has said to stop using it ask questions as to why he has told you this. take care stay safe.x

[Gilly100 in reply to pink123floyd]

Hi pink123floyd, The reason both my GP and consultant gave was as Pipsqueak77 said "National guidelines say that asthmatics should be seeking additional help if they have an attack that requires the use of a nebuliser." I only used when necessary but it was very reassuring to have it there, especially in those night time hours. And, if it didn't give relief, you know what your next step is. Sending you my best wishes and good luck!

[Littleeak]

We're in Staffordshire. My husband has copd & asthma. He has two nebulisers, one 'normal' & the other a portable one both of which he bought himself. He has salbutamol and ipratropium nebules prescribed first by his consultant & now on his monthly medication list. He gets more than he actually needs & ,after reading your post, that's a good thing so he can build up a 'just incase' stock!

[Bevvy]

I read posts such as your with a sense of dread/horror. I have a nebuliser and only use when necessary. Indeed GPs have used my home nebuliser as a way of keeping me out of hospital when I have had a severe chest infection. On those occasions my oxygen levels have been reasonable and have used nebuliser 4x per day. Gp has seen me every couple of days which is probably more than I would have seen a doctor in hospital!I occasionally use nebuliser at other times but I sense when I need nebuliser and when blue inhaler is sufficient.

Just the psychological reassurance of having nebuliser at home helps me I’m sure. I have had discussions with gp as to when I need to call for medical assistance and just hope that this doesn’t become practice in my area.

[CANINE12]

I have a home nebuliser which I only use if I need an ambulance. Fingers crossed my asthma hasn't been too bad recently. (However I have been sent home with a chest infection which affected my asthma and told to use home nebs). This is against asthma guidance I think.

I've been in a situation where an ambulance took several hours to arrive. I have severe asthma and I can go downhill pretty rapidly (this isn't common for asthma I don't think). Fortunately I was able to use my nebuliser until the ambulance arrived.

Another time I was taken to hospital by ambulance and left in a chair with no medical staff nearby. I had to administer my own nebuliser to stop any sudden deterioration. I was later admitted.

I will always seek medical help if I have to use one nebuliser as agreed with my Dr.

I've had both excellent care and horrendous care from Dr's and some nurses. This is just my experience.

[martin_1972]

Hi Gilly100,I am London area and i am prescribed salbutamol nebs, Ipratropium nebs, 7% hypotonic saline nebs for use twice a day for the salbutamol and 7% hypotonic saline and have been for at least 4 years and also on biological injections prescribed by the Royal Brompton and managed by my GP for the nebs for severe Eosinophilic steroid dependant asthma.

I know that some medical professional don't like to prescribe as they don't want people putting off seeking emergency care before it escalates

[Angelgoth]

Hi I also use a home nebulizer for saline and ventolin, I was very recently prescribed more ventolin nebuels, and I live in London. I only use my nebby if I reallly need it though and has probably kept me out of hospital many times. All hospitals seem to do these days now anyway is give u neb and send u home, so would rather stay home in the first place. My doc and cons are also both happy for me to have home nebs. Royal Brompton prescribed them