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Home Nebs šŸ« - they may help improve QoL in severe asthmatics, but are they safe?! Everything you need to know!

EmmaF91 profile image
EmmaF91Community Ambassador
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Hi everyone. Another infomercial for you all! Hopefully this will be relatively short (but you know me... they never are šŸ˜…), and itā€™ll definitely shorten my next post (add-ons from consultants)! So here we go...

Home nebs are almost always frowned upon by consultants (and definitely disapproved of by AUK without con/tertiary approval) and they should be given strict personal rules if they are prescribed for you (not just ā€˜have at itā€™ šŸ˜…). If you have home nebs you should definitely be under a consultant, and probably (depending on usage) being referred to a tertiary centre. If you are not under consultant care, but have been prescribed/told to get a home neb, please speak to AUK, and also ask your GP for a referral!

Many things can be driven through nebulisers, so Iā€™ll cover some of what an asthmatic may be told to do at home (and mention what other things may be used for other conditions, or other emergency situations). As always this is based in the UK!

SALINE NEBS

Often prescribed/suggested to help with mucus clearance for all sorts of resp conditions, like bronchiectasis and COPD. Saline can come in different solution %, so if you find that you are having issues OR itā€™s inefficient, please discuss this with your team! Asthmatics also need to be warned: it is not uncommon for saline nebs to trigger asthma issues, so keep an eye out if you donā€™t know how youā€™re going to react. Those with truly brittle asthma (going from fine to nearly resp failure in minutes), you may want to see how you react whilst in hospital if youā€™ve never had it before!

SALBUTAMOL

Comes in 2 doses; 2.5mg/2.5ml and 5mg/2.5ml and only available on prescription in the UK, preferably with a consultants approval (not your GPs). Tho often equated to 10 puffs of ventolin through a spacer, past a certain point they can make it a lot easier to breathe in as you donā€™t need to worry about coordination etc, which is why they are usually used in emergency care. Some doctors (and patients) find that there is a limited difference in improvement between 1x2.5s and 1x5s, however side effects are often a lot worse, so often they suggest 2x2.5 over 5s in hospitals if they feel you need the additional salbutamol. The benefits of 5 is speed tho so they are often given in ambulances or a&e.

If you are prescribed home salb nebs make sure you have a clear plan and follow it! The main reason consultants donā€™t like home salb nebs is because they can mask the underlying issues leading to people not seeking help until itā€™s too late. If you have one, follow your rules. If you donā€™t have rules, get some and if you do have rules donā€™t allow anyone other than the prescribing medic (that you trust) change them!

The number of times medics decide they can undertreat/discharge early just because you have a neb at home is unbelievable. Just like the number of a&e docs that tell you to over treat at home so they see you less šŸ¤¦ā€ā™€ā€. For example my personal rules (yours may be different) are; maximum 2x2.5/day (informing hosp when regularly on 1, and as soon as had 2) and never back to backs. If I break these rules I have to go to hospital no matter how good Iā€™m feeling, and if they think Iā€™m regularly ignore the rules they will put a hold on the nebule prescriptions. However on multiple occasions a&e have tried (and succeeded before I learnt) to send me home on b2bs and/or needing nebs every 2-4 hrs. Something that my consultants and asthma team strongly disapprove of, and has caused emails between depts in the past šŸ˜…. I have now learnt to ignore people trying to change the rules and inform them that I wonā€™t comply to their advice without my consultants approval (which I know I wonā€™t get šŸ˜…), which usually stops them sending me home to neb.

The benefits for home nebs for ā€˜severe and uncontrolledā€™ asthmatics, mean that you may be able function more if you have constant issues, or for brittle asthmatics they mean you can start treatment whilst waiting for the ambulance. However as I said, they should be consultant prescribed, not be done as a request from you to your GP. If you have a home neb and do not have a consultant you need to be referred - especially if itā€™s part of your daily treatment. Be sensible - the reasons cons donā€™t like them is cause people donā€™t go to hosp when they should, so if they say no then just remember they are doing it to keep you safe!

In acute situations (ambulances/a&e/itu etc), you can b2b salb nebs almost endlessly (only in a hospital setting (!) where they can monitor you), however ideally they should last 4hrs minimum, so if you have a home neb and itā€™s not lasting you need hospital. If youā€™re in hospital and they are not lasting they should possibly be thinking about escalating care. The other issue is hypokalemia (low potassium) which is a common side effect of salbutamol, so if youā€™re using a lot of salbutamol (in whatever format) keep an eye out for muscle cramps/weakness/twitchiness etc and get them to check if you are concerned you have this. Donā€™t b2b at home without instruction (usually from ambo dispatch) as this is dangerous and follow your rules!

IPATROPIUM BROMIDE (atrovent)

Typically given in hospital in acute situations, rarely atrovent nebs can be given at home. This is a SAMA (short acting muscarinic antagonist), so LAMAs (like spiriva) should be stopped if using them. Unlike salb nebs, they have a limit to 4 a day (spread out). Home atrovent nebs for asthma are really really not approved of, so should only be prescribed by a tertiary consultant.

STEROIDS/ANTIBIOTICS

Typically not used for asthmatics, however people with COPD or bronchiectasis they may be advised to nebulise these rather than use inhalers or tablets. This is mainly to have a more direct effect in the lungs and to make is easier to coordinate etc.

ADRENALINE

Occasionally used in emergency situations, but usually in babies etc for croup. It can be used for asthma, if the donā€™t want to inject it.

MAGNESIUM (and other elements)

Very very rarely, an asthmatic may nebulise magnesium as part of their treatment. This helps a very very small number of asthmatics by relaxing the airways through direct absorption (as opposed to IV infusion in emergency situations). They would only be prescribed by a tertiary doctor. Other conditions can also nebulise other elements (gold etc).

RULES

As Iā€™ve previously mentioned, if you have a home neb for prescribed drugs (ie salbutamol) you should have rules about when to seek further help. This will reduce the risk having one has. Maybe your rule is ā€˜only use when waiting for amboā€™ or ā€˜max 2 a dayā€™ or ā€˜4hrly, get help if need any salb between nebs, including ventā€™ etc etc. Rules will be personal but they should be sensible and given by your consultant. If youā€™re needing nebs as part of maintenance (and ā€˜onlyā€™ asthmatic) you should definitely be under a tertiary hospital (or on the waiting list for one). The other thing to ask is when to use it! If your rules are ā€˜couple times a day maxā€™, when do you switch from 10 vent to using a neb. This is something Iā€™ve not found out for myself yet! šŸ™ˆ I have asked and have gotten no clear answer so have made up my own rule as to when to use nebs šŸ˜…

If you are one that bought a neb machine at the start of covid, and use it for saline, then officially you do not have one. No one in a&e should be changing your neb rules/changing your neb meds for discharge (ie giving atro nebs) without your consultant/tertiary consultant approving. If this happens you should either refuse or contact your team to tell them what happened and to get advice. Doctors can abuse home nebs, just like patients can, and all it does is put us at more risk by masking issues and stopping us getting the care we need. Be sensible; get rules and do not break them!

MACHINES

There are both portable and mains driven devices. Most people have a preference to a brand but like all things thereā€™s pros and cons to each of them. Speak to your doctor about which one they suggest. The important thing is to make sure the particle size is correct. Each medicine will have different particle sizes, and if what you are using has a larger size than your device can handle youā€™ll end up not receiving the drug (and potentially breaking your device). This is mainly (only?) an issue to the mesh portable ones (not compressor ones), which can only be really used for salbutamol and atrovent. If you donā€™t know what particle size you need, before you order speak to someone - either your doctor/AN who is saying to buy it, or the company selling it. I know evergreen is really helpful on answering these sorts of questions (evergreen-nebulizers.co.uk/... )

WHAT ARE THE ISSUES?

As Iā€™ve hopefully already covered (in depth šŸ˜…), the main issue is that home nebs make people ā€˜feel betterā€™ without treating the underlying issue. This can make them reluctant/delay going to hospital, as they can just neb away the problem. This is really tempting for anyone which a neb cause who wants to go to hospital when they feel like theyā€™ve treated the issue?! The issue comes when the neb stops working, and suddenly your lungs are really inflamed the the hospital canā€™t use that as a treatment method. This reason is why my personal rules are set as they are, so I donā€™t over treat at home and risk myself, and I have also told the hospital of the issue so they can either try and get me into hot clinic or advise me to get help.

Another issue on this regard is you neb at home, respond, go to hospital and get sent back home again cause youā€™re appearing ok. I strongly advise anyone with a home neb to get their consultant to write a letter saying if presenting to a&e, you need more than nebs, and probably need admitting. Needing more nebs than your rules allow shows that youā€™re not controlled, but if you have a home neb, youā€™re a severe asthmatic and have probably maxed out any home ā€˜solutionsā€™ to fix the problem (like prednisolone or add on therapy). Because post neb you may not present to a&e like an emergency, you can be dismissed, whilst had you not had a neb already theyā€™d treat. Tbh personally I feel all severe asthmatics should have some sort of consultant letter/hospital passport as we tend to limbo on max therapy, but then get treated like we arenā€™t on max therapy in a&e leading to under treatment and no resolution.... but thatā€™s a separate issue šŸ˜…. You may also find doctors try to discharge early just because you have a neb, and they try to change your rules - if you arenā€™t on regular home nebs in the rules then you shouldnā€™t be discharged on them. This leads to under treatment and and escalation of issues. So if you want/have a home neb you must able to tell the doctors (a&e/ward/GP etc) that you will not abuse it without approval from tertiary con. If you donā€™t feel able to say this in this situation then Iā€™d strongly suggest not getting a home neb!

Another thing that causes issues is people not cleaning/replacing nebs/parts. If you donā€™t clean/sterilise the parts, germs can fester, then then suddenly your neb isnā€™t helping your asthma but giving you a chest infection. If you step back and are honest with yourself, and think youā€™re too lazy to do the cleaning/buy replacements (as you canā€™t get on prescription for asthma) then home nebs are not for you.

The last issue that is often forgotten is nebuliser maintenance. Nebs are medical machines and this need to be serviced - who, how and when, are all questions to ask if youā€™re advised to get one. Who will do it?, how will they do it (send it off? Take it in?) and how long will you be without for?, when should it be serviced (annually?) etc etc. If itā€™s not serviced regularly youā€™ll find that it stops working properly and then itā€™s not there for when you need it! If you need to know more about servicing/cleaning your neb, this website is great; naratbc.org.uk/

For more about home nebs; asthma.org.uk/advice/severe... or about nebs in general; asthma.org.uk/advice/nhs-ca...

Anyway hope this helps anyone who has a home neb, or who has had it suggested to them! If you feel like Iā€™ve missed anything, or should like to extrapolate on mag nebs (I know thereā€™s at least 1 person on here who uses them! šŸ™ˆšŸ˜‚) or would like to give your rules comments below, feel free! Or any questions of course!

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EmmaF91 profile image
EmmaF91
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17 Replies
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TeachKat profile image
TeachKat

Very informative piece, thank you - but it made me chuckle when you talked about servicing your ā€˜nebā€™ because in Yorkshire, your neb is your nose!

EmmaF91 profile image
EmmaF91Community Ambassador in reply to TeachKat

šŸ˜‚šŸ˜‚

Pipsqueak77 profile image
Pipsqueak77 in reply to EmmaF91

Hi

If you are prescribed a neb to use at home the hospital will supply and service it on a regular basis along with the consumables required.

They also teach you how to use it safely and make sure it is suitable for the medications that you have been prescribed. I was given a trial dose at hospital to make sure it was safe and shown how to use it correctly and safely.

This is just my personal experience but I think if you genuinely need a home neb hospitals are best placed to supply equipment and support you.

Take care all

šŸ˜ŠšŸ‘

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Pipsqueak77

They donā€™t in England. They may elsewhere, but in England if itā€™s prescribed to an asthmatic the asthmatic usually has to buy their own device, maintain it, buy supplies etc. Itā€™s only non-asthma resp conditions that can get neb machines and accessories supplied by the hospital.

Again, in England, there is not usually any safety checks or advice or even necessarily a safety check.

Iā€™m glad you donā€™t have to do this stuff, but many of us with home nebs do have to organise everything, and if they arenā€™t aware (and as there isnā€™t education or support) they wonā€™t know some of the things like having to clean it etc.

So Iā€™m really jealous that you didnā€™t have to buy your own stuff! It definitely builds up over time cost wise šŸ˜….

Pipsqueak77 profile image
Pipsqueak77 in reply to EmmaF91

HiWell Iā€™m an asthmatic in England!! So...???šŸ¤·ā€ā™‚ļøšŸ¤·ā€ā™‚ļø

šŸ˜ŠšŸ‘

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Pipsqueak77

šŸ¤·ā€ā™€ļøšŸ¤·ā€ā™€ļø well Iā€™m jealous then! Iā€™ve always been told to buy my own stuff. All of it. And that was by secondary and tertiary care centres (as in multiple šŸ˜…). They want me to have it, but I have to supply it. And I know many others in similar situations...

Pipsqueak77 profile image
Pipsqueak77 in reply to EmmaF91

HiI return my neb to the hospital every year and get another.. and they post replacement filters, mouth pieces etc upon request..!!

Guess Iā€™m lucky then...šŸ˜

twinkly29 profile image
twinkly29 in reply to Pipsqueak77

I think you might be one of the few - at least now, maybe it was different in the past (I don't know how long you've had yours though!) I've had home nebs for 6 years ish and definitely had to get my own.

Actually 18 months ago the ANs at the hospital were going to loan me one because mine had died and we weren't sure if I could get one in time for discharge - but I managed it so all was fine. But it would definitely have been a short term thing and only because me going home without one wasn't an option.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to twinkly29

Iā€™ve had them for 4-5 years. So maybe it is a time difference? When I got prescribed them I was at uni and was told only copd etc etc could get them on Nhs.

twinkly29 profile image
twinkly29 in reply to EmmaF91

Ah what a surprise.... favouritism šŸ˜†

Pipsqueak77 profile image
Pipsqueak77 in reply to EmmaF91

Had it for about 6years or so... so donā€™t know...šŸ¤·ā€ā™‚ļøšŸ¤·ā€ā™‚ļø

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Pipsqueak77

I have one on loan from the hospital, but I have to buy my own supplies. No one at the hospital told or showed me how to use or clean it or where/when to get new masks, tubes etc. Good for your hospital for doing that, but it isn't universal. Apparently (and yes I did check), this particular model doesn't require regular servicing.

They will also only give you a big mains-powered compressor one at the hospital. This is understandable and the one I have works very well at home. However, as a relatively young person who works/worked outside the home (well I did in 2019 when I got home nebs, har har, and hope to again), I also needed something portable and not loud for salbutamol - I used my neb several times in the office while I worked there (within safe use rules) and it helped when I had unexpected triggers.

For this I asked Evergreen, who are very good and know their stuff; they asked what I planned to put in it and what I wanted from a neb, advised against one model I was considering and suggested another. I have also bought another portable one from Amazon, but only because it was out of stock on the Evergreen site at the time and they didn't expect to get any for a while.

My hospital is a tertiary centre and honestly I can't imagine them advising on any of the day to day stuff with nebs beyond the initial decision to prescribe the nebules and when to use. I think many people are just left to it with the practicalities, and I definitely needed to ask people like Evergreen and other asthmatics I trusted who already had nebs and were sensible with them.

dawnhaycock profile image
dawnhaycock

I think Covid has bought a change of heart. My daughter was given a nebuliser and meds at the start of Covid as the consultant was keen to keep her out of hospital. Prior to Covid he said if she was poorly enough to need a nebuliser he wanted her under medical supervision in hospital. Instructions were if she needs a second, back to back call an ambulance.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to dawnhaycock

And this is where I get irritated šŸ˜…. Cause if the con wasnā€™t happy for her to have a home neb before covid, he shouldnā€™t have changed his mind. The asthma risks are the same šŸ¤¦ā€ā™€ļø. But Iā€™m glad he gave instructions!

twinkly29 profile image
twinkly29 in reply to EmmaF91

Yep I agree - no, no-one wants to be in hospital with covid about (or ever actually!), but if things warrant it then nebs to keep someone at home could actually be dangerous.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to twinkly29

Yeah. My neb rules didnā€™t change due to covid. And I had 5 (?) admissions between March and Oct... no one ever wants to go, but if he wasnā€™t happy pre covid he shouldnā€™t have changed his mind just to ā€˜potentialā€™ covid risk.

It is what it is however, so please make sure you get help following the rules. And Iā€™m assuming he gave a cap per day (rather than just ā€˜come in if needs b2bā€™)...

dawnhaycock profile image
dawnhaycock in reply to EmmaF91

Yes, max 3 per day.

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