WHERE IS THE SENSE

[shadow4me]

After being admitted to AE twice this weekend with pneumonia at the bottom off my right lung and low sats I was both times put on nebulisers ?On ringing the nurse at the doctors today I was told that the respritary team at Worthing does not allow home nubelisers has it stops copd patients going out and about ?But surely it would help to keep you away from the mess our AES are suffering at the moment I have never seen such bedlam in our NHS service overstretched and they are fast losing hope can you blame them so why not try to lessing our burden on them and allowing a home neb for emergencies I have severe COPD and just feel we are being withheld treatment we need x

[sirolf3742]

i have severe COPD and had to buy a nebuliser to keep me out of A and E I use the 2 nebulising solutions as they do in hospital Ventolin and ipatropium this keeps me out of hospital my gp gives me what I need and has done for a few years so I can manage my condition at home but I need oxygen at the moment gp is trying to arrange this do not hold your breath !!!!! sorry about the pun" may take a while meanwhile "so until they can assess me I have to ring 999 get a ambulance then have the oxygen and come home and if I need it again ring 999?? we try to save the NHS but it is ridiculous really my sympathies , I also have a portable small hand held nebuliser fits in your pocket so I can go out and know if I need it it is there , but finances again and it costs !! take care and let me know how you are

[tomc]

As has been said, you can buy a nebuliser pretty cheaply online and then ask your doctor for the ampules.

I use saline, and salbutamol in mine and I only use that when I am low O2 or struggling to get decent breath.

I was told to use it up to four times a day when I am bad or less when I feel a bit better.I do still use the easy breath inhaler as required.

Hospitals even in Scotland are toiling with the amount of people at this time of year and unfortunately, quite a lot of them could treat themselves with home medication.

wishing you well for 2018.

Tom.

[sassy59]

Our local hospital is also Worthing but Pete was lucky enough to be under the Royal Brompton so has a home nebuliser. They should not prevent you from having a nebuliser if it helps. Insist upon it or perhaps buy one. Xxxxx

[shadow4me in reply to sassy59]

I have purchased one today but they wont prescribe the meds x

[sassy59 in reply to shadow4me]

Will your own doctor prescribe the meds? Pete uses his nebuliser twice a day and wouldn’t be without it. He has ventolin, ipatropium, pulmicort and mucoclear via the nebuliser.

Good luck to you. Xxx

[shadow4me in reply to sassy59]

According to the nurse I spoke to on phone today Worthing resp dont believe we should have them at home lets hope whoever made this rule doesn't get so unlucky to develop lung disease it will no doubt be a different story then ,The funny thing is I have never seen a specialist and basically have spent the last year housebound due to copd and anxiety and have had no surrport from the doctors at all xx

[sassy59 in reply to shadow4me]

That’s terrible shadow4me and l would press to see a specialist as you need proper treatment. I really do wish you well. Xxx

[y_not in reply to shadow4me]

Ask the GP rather than the hospital.

[shadow4me in reply to y_not]

It was the GP that said no the hospital has given me a few nebs to use but wont last long

[Stumpy55 in reply to shadow4me]

I am truly sorry for your unbelievable situation shadow4me, and I totally agree with you, this Nurse is obviously unaware of lung disease and how we all feel in times of trouble, let's hope she never finds out first hand. I would strongly advise you to push forward with the hospital hart and chest clinic, it's so wrong that you are housebound without the proper help. Please dont give up . Let us know how you get please and good luck. ✋️😊

[knitter]

No good in buying a nebuliser if your health professional won't prescribe the medication.

I have a nebuliser which now I only use in emergencies, but i only live 5 minutes from my A and E so I know after many years when I need expert help . If you are given nebulised medication by a paramedic or doctor they will monitor your SATS , breathing rate and pulse.....they are the experts.

[shadow4me in reply to knitter]

We do at times need a nebuliser when poorly ?From what I am finding the medics at the hospital are not that clued up about copd they are usually general doctors like our GPS all I know that it would save the NHS a lot off money and time if we were taught how to use a nubiliser properly rather than take a AE bed up while being nubilised and let them treat others

[O2Trees]

If you have pneumonia, you either you need nebuliser treatment or you don't, shadow4me. I find their explanation for refusing it bizarre - you can't have a nebuliser at home "as it stops copd patients going out and about?" People on oxygen 24/7 get out and about, and with a nebuliser it takes a mere 15 minutes 3-4 times a day to inhale the nebuliser medication.

Maybe there just isn't a respiratory nurse available to set this up for you at home? When I had pneumonia and was refusing to go to hospital (yeah, stupid and i did eventually go) they brought an NHS nebuliser from their depot and I had ipratropium and salbutomol nebules supplied by the GP.

Theoretically what you say about saving the NHS money is correct, but for community care to work, there needs to be investment in community staff - we have a specialist respiratory team in our area and they are very reliable. Community care is not itself a cheap option. But as someone with severe copd you need access to home care when necessary. But maybe they are meaning they need to have you in hospital to monitor you right there? Since you have pneumonia that would make sense, but the point about prevention is to avoid emergency admissions and I find this a bit puzzling. Something isn't making sense here.

[y_not]

My local hospital (Chesterfield, Derbyshire) was all in favour of me buying my own nebulizer (from Amazon) BUT he insisted I get the Salbutomol from my GP and NOT via the Internet. It's been a Godsend on a couple of occasions!

If it's an option then buy one and ask the GP to prescribe the Salbutomol nebules

[Hidden]

Ask for a referral to the respiratory clinic in a different hospital than Worthing then.

I did write here about my specialist telling me there is this controversy about nebs nowadays..I have one but don’t use saline, it irritates my airways.. I use a mix of pulmicort and Ipratropium up to 3 times a day..

Another way is to use more inhaler puffs but you need a prescription of course if not you may run out. My specialist likes that better. He said it is the new trend. So I can have puffs on demand, of course I am to check the notice and not go over the maximum dosage. I have an aerochamber.

Both methods have got their plus and minus, sincerely they all irritate my mouth and throat despite rinsing, brushing teeth etc..

I juggle..I juggle all the time with all my meds, dosage etc..the specialist team likes that apparently, we know our own body and they want to make us more responsible etc..

However it makes me tired, I wish someone, some expert just said here is your prescription, take it and all will be well.

Take good care xx

Fran

[tomc]

I agree with happylondon.

On the one hand you are told "you know your own body" and on the other hand "you should have seen your respiratory team"

I was attending clinic for 9 years as having Bronchiectasis . NO COPD! Suddenly I was told NO Bronch but COPD, underlying Asthma and airway obstruction.

What makes me curious is, why when we describe what is happening to us, do doctors say it is their job to look after our health but imply on the above "you know your own body" treat yourself ?

Very confusing for someone who is not medically trained and worried if they should go to hospital OR just take a pill.

[Dedalus]

It's just MAD - I really feel for you in this predicament and you must be so frustrated. I'm wondering if you see your GP in person and explain the situation he/she may see the logic and help you out. I know the nurses are a great help but some of them can be very intractable as they have a rule and they're sticking to it! Hope you can get this ridiculous situation sorted soon x

[mskpjb]

Hi shadow4me . I bought a nebuliser a few years ago hopefulluy to save me a few hospital trips. My doctor at the time was happy to prescribe the nebules in spite of all COPD nurses saying that a spacer was just as good. My doctor now refuses to prescribe the nebs and says that a spacer is just as good. Why do they use nebulisers in hospital then ? Sheila x

[shadow4me in reply to mskpjb]

Totally agree with you if you are struggling the hospital treat you with nebs ?Woudnt it save money and their time to try at home first has for the spacer being has effective YES MAYBE when we are breathing better but when our breathing is bad trying to breath the meds through the spacer is virtually impossible xx

[O2Trees]

Im very interested in this apparent change of thinking about using nebulisers. Id never heard of it. If anyone has a link to info about this, it would be great to have it.

[Stumpy55 in reply to O2Trees]

I am shocked at what I am reading about those of you who have had to buy your own nebulisers and then having trouble getting your meds for it. I have very severe copd, bronchiectasis and severe osteoporosis but lucky for me I was given a nebuliser at the heart and chest clinic a few years back plus all the right meds for it from my G.P. I consider myself very lucky especially after reading what some of you have to go through. I have two district nurses come in to do my ons etc but anything I need they are there for me. We all know our own bodies more so than any doctor, I use my nebuliser four times daily plus spirivia pump and also Bricanul inhaler. My doctor and nurses all say the same, step up if your having a bad day. I can only say I wish you all well and don't give up the fight. ✋️😊

[Hidden in reply to O2Trees]

O2Trees sorry, I don’t have a link but I believe the rationale for copd is the same as for asthma, which is that all maintenance add-on drug therapies should be tried first - ICS/LABA/LAMA etc - and only if these fail to control symptoms should the patient be offered nebuliser therapy. Not many people would fall into that category, probably only severe/brittle asthmatics & ditto copd? I doubt there’s a blanket ban on nebulisers as this nurse has suggested, and the “it stops you going out” argument is simply nonsense. She’s just fobbing patients off. Either she can’t be bothered to explain the policy or more likely doesn’t know it in detail!

[O2Trees in reply to Hidden]

Yes, Im sure you're right Hanne - that makes total sense.

[warwickstag in reply to O2Trees]

Try Jeremy Hunt, there's every chance he's got his cost cutting finger in another NHS pie. Shameless, the lot of them. He even had the gall to say the winter close down of elective surgery was better planned this year as people would know better where they stood!. With him in charge, we all know where we stand - up the creek without a paddle.

[edited by Administrator]

[O2Trees in reply to warwickstag]

Hi WS - what a nightmare it all is, but if Jeremy H wasn't there it would be someone else.

If the public really knew what is happening to the NHS they would be at the barricades. But it's covered over and suppressed in the media, with A&E crises being the focus, but not why they are happening - underfunding, bed cuts, privatisation etc. Little bits of information like various cuts or rationing creep out incrementally but the public never get the whole picture.

[shadow4me in reply to O2Trees]

They are being deliberate in letting the NHS get in such a shambles and run down so that there will be no other option than to get rid and it is happening under our eyes x

[O2Trees in reply to shadow4me]

Yep, disgraceful.

[warwickstag in reply to O2Trees]

Just so angry at seeing him and the PM offering empty platitudes for their failure to act.