CONFUSED : In our area in the UK the... - British Lung Foun...

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CONFUSED

shadow4me
shadow4me

In our area in the UK the meds for nebulisers are not given until you are on pallative care with COPD, Recently i went to the hospital to have some breathing test where i was given a treatment to test for reversability and noticed how much better it felt than just a inhaler the lady who done the actual test said that she much prefers Nebs to the inhaler and coudnt understand the reasoning for not allowing one ?x

17 Replies
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Hi

If referring to Salbutamol (Ventolin) the reason I was given having been referred to the respitory team with the same question.

It’s the last resort treatment given in hospital admissions. Plus it’s a much higher dosage. Best given under supervision.

On my first hospital admission, after the initial treatment to make me stable, further treatment for three days in AMU was nebs three times a day, I declined the third one. On my discharge day they would not give me the morning nebs, but advised me to use my normal medication. For which I felt worse and had to wheeled chaired out of the hospital.

On my second hospital admission similar scenario, no nebs on discharge day.

I still believe that if patients where treated as a individual and not as a group, treatment could be better tailored to the individual persons need.

Both of my admission plus one A&E visit where non infection exacerbation.

If I would have kept up the arguments they probably would have relented, they did advise to use my Ventolin morning, noon, teatime, bedtime and as many times in between the even offered to speak to my GP for extra inhalers.

On another point not everybody can tolerate Ventolin, can cause shakes and palpitations.

mskpjb
mskpjb
in reply to stone-UK

On all my hospital stays ( and there have been many, pneumonia 12 times) I've been given nebulisers three times a day. One of the rules for discharge was that I must have been off the nebs for a full day. I bought a nebuliser in the hope of reducing the being carted off to hospital and only ever used it when I had an exacerbation. My then doctor was happy to prescribe neb capsules but since my move I can no longer get them. It would be nice to be treated as an individual Stone but we've a long way to go for that. Sheila x

shadow4me
shadow4me
in reply to mskpjb

I also brought a nebuliser and coudnt get the meds but the AE doctor gave me some when i was ill with pneumonia in the new year i havent used them yet but will if i need to really all it is common sense and not to over use xx

shadow4me
shadow4me
in reply to stone-UK

It gives me the shakes if i have to much but that i would rather have than not being able to breath i would really like some of these medics who make these decisions to feel what it is like has you say we are individuals and have different needs the inhaler doesnt help me much at all it seems like anything that can help us is withheld xx

stone-UK
stone-UK
in reply to shadow4me

Hi

There is a alternative.

Bricanyl has the active ingredient terbutaline (a bronchodilator that functions in a similar way to salbutamol).

mskpjb
mskpjb
in reply to stone-UK

I've been on Bricanyl for years Stone and I wouldn't give it up for anything. I can't take Salbutamol it gives me hallucinations - not nice ones !

shadow4me
shadow4me
in reply to stone-UK

Thankyou Stone will ask the nurse x

I only use my nebuliser for emergencies, but over the years I have learnt when to get professional help, rather than over rely on the nebuliser .

We are all different, some tolerate Ventolin better than others, I have Combivent nebules. If you use a nebuliser under the supervision of a paramedic or doctor they will measure your SATS etc.

However one of the GPs in my practice does not recommend nebulisers, while the nurse said it was ok.

If your preventer is not working too well, and you are using a lot of the blue inhaler, maybe you should ask for a review.

My Respritary nurse told me that Neb's are only used in emergency scenarios and that it really isn't suitable for copd but only for asthma, I begged to differ with her as I know I felt amazing when I had Neb's in the hospital I told her I felt like I had been reborn and taking my first breath but she wouldn't have it xx

Johnem
Johnem
in reply to Usgang

Hmmm, my Respiratory Nurse Specialist is a highly qualified Hospital grade A lead nurse and she organised a home nebuliser for me and both Salbutamol & Saline nebules on repeat prescription with my local GP. I guess she would completely disagree with yours.

Hi I have now got a nebuliser at home my Consultant prescribed me to have one and use when necessary I had a severe chest infection so I went onto the nebuliser morning and night then has I started to get better I reduced the morning one then a few days later I was off it

During this hot weather when I have struggled I have taken one dose to help me out when I needed it but it’s nice to know I have one to use when needed

Also I’m on the Rehab course and they will tell you to use more doses or puffs on your inhaler upto 6 puffs at a time when you need it this also helps

Hope this hisof use to anyone .

Hi 👋 I get 2.5 ml ventolin nebs for my nebuliser off my dr if you need them ask for them I’m sure you will get them good luck. Richy

shadow4me
shadow4me
in reply to oooodicky

Sadly not around here x

oooodicky
oooodicky
in reply to shadow4me

Hi again if you have a community health nurse that you can get in touch with I would explain to her that you need your nebs but dr won’t prescribe them she should be able to do them for you as I’ve had them off mine that way. Happy hunting

I am on NEBs and I am Moderate climbing to severe BUT...I have been on NEBs for about 2 years now and I am not a palliative care patient..

I was also asked recently If I was using oxygen by the hospital... surely they would know if I was as they would prescribe the treatment!! as it happens I don't use oxygen at home yet and hope i will not need it for a good few years yet and a long way off palliative care.

glad you found help.

I am from the US. I am moderate to severe Copd, I am between the 2. I have been using a nebulizer for at least 10 years. I couldn't get along with just the inhalers. I use DuoNeb 3 to 4 times a day and budesonide 2 times a day. I told my doctor if you can't breath how are you to get the correct amount of medicine from a inhaler into your lungs, which at times I could not. I agree with all that we need to be taken care of as a individual not a group!

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