PCTs and Home Nebulisers

Hi

We have a neb at home for my daughter. I know that they are not keen on home nebs but if your consultant says yes not sure why the PCT wont let you have one. We have just returned our borrowed/loan one (as we have acquired my dads old small portal neb.....Thanks Grandad !!) so that someone else could use it. The reason we were allowed ours was because our local hospital closed its A&E department overnight and the closest one is nearly 20 miles away. We have a protocol for its use, which in our case is emergency only.

If i was in your shoes, i would definitely get to the bottom of it some how. Doesn't make much sense does it ? Best of luck

Cathy xx

My local hosp and PCT dont routinely give for asthmatics yet do COPD? but the specialist regional centre i attend supplies mine aswell as sundries needed. This is a welcome break as costs can mount up when self funding aswell as regular servicing costs which are now covered by hosp?

Andrea xx

firstly thank you both for replying to me

I am meant to take nebulisers everyday at the moment i take it only twice a day as my chest is not as bad but i am allowed to take it up to 6 times a day.

Hi Simi,

the problem is the age-old NHS problem - the different funding pots that money comes from for these things.

Basically, because your consultant is recommending the neb, the PCT say it should come from the hospital budget. Because you are at home, the hospital say it should come from the PCT budget.

I have run into these problems with subcut terbutaline, although luckily not nebs. I found that asking the consultant to speak directly to the people involved to resolve the problem was the way to go - he was ace and it all got sorted very quickly. Either that or asking the GP to contact the consultant.

Hope you get things sorted soon

S

I have been supplied one by the Royal Brompton for the last 5 years. It is serviced, or replaced every year, as needed. All I need to do is take it back at an agreed date/time and it is tested, new filters, tube and other items supplied, all at no cost.

I have purchased a small, battery powered one for when I am travelling but the RBH would supply that as well, if needed.

It's a case of different rules apply in different areas.

Come on Gordon, get this inequality sorted out.

On that basis, why not make more of a fuss, write to your MP, MEP, Health Secretary and anyone else who may be able to influence this imbalance.

Hi everyone,

As we are discussing funding, I won't go into my usual spiel regarding all the other issues about home nebuliser use (I can hear everyone breathing a sigh of relief) except to say that having a home neb is something that is not safe or right for everyone and that it needs to be a well-thought out decision by a hospital consultant, as it obviously is in Simi's case. Use the search facility to find one of my previous rants on the subject if you want more information!

I have a large mains powered air compressor style neb which is on long-term loan from my local hospital, and is returned for servicing once a year. I also have a small battery powered ultrasonic neb (the Omron U22... although I'm coverting an Omron Microair!) for travelling, which I bought myself. My local always used to have smaller battery operated nebs as well, which they would loan for short periods of time for travelling and holidays - I don't know if they still do this.

I know it is variable whether hospitals do provide this service. As your consultant has recommended it, you should in theory have a pretty good case for getting one supplied. If your hospital has a COPD early discharge scheme, they may be able to loan you one from their supply of compressor machines. Speaking to one of the COPD or Respiratory nurses, if there is one, would be a good first point of contact. The CF service or the Paediatric respiratory service may also have compressor machines they can loan. It will be variable how willing other services are to loan to patients who don't strictly fall into their remit, but you may have some luck. It will depend also on their supply - most services will be in short supply themselves and will struggle to meet the needs of their own patients, unfortunately.

If you have no luck in getting one from one of the hospital departments, your GP can apply for special funding for one from your PCT - they will have a panel who make decisions on funding things that are outside their normal policy. Again, your consultant's recommendation should carry some weight. The best thing to do is to prove to them that it is cost effective. Calculate how many days you have spent in hospital that you could argue could have been avoided by having a neb at home (not that having a home neb is necessarily an alternative to admission, but it may be that some admissions could have been avoided or shortened if you had had a neb at home, or at least you may be able to argue that). Ask your consultant's secretary to find out the approximate cost of hospital treatment. It does vary from place to place, but as a rough guide, an A&E visit costs approximately £40-70 (depending on treatment, obviously), and an inpatient stay is approximately £200-300 per night for a ward bed, £500-600 per night for HDU and £1000-1800 per night for ICU. It should be fairly easy to demonstrate that it is more cost effective for the PCT to spend ~£100 on a compressor machine for you, even if it only prevents one or two nights a year in hospital or a couple of A&E visits. Don't forget that when you are asking for funding, you need to include the cost of servicing, repairs and replacement, as this can get quite pricy.

Hopefully you should have some luck with this strategy. As Owl says, I know people have managed to persuade their PCTs to fund subcut equipment such as the Sof-set needles and even different pumps using a similar strategy of pointing out that it is a financial saving. I also have a friend with brittle asthma who didn't meet the PCT's criteria for funding Xolair, and managed to persuade them to fund it anyway on the same principle. Be warned, though, that it does take a while for the PCT to make their decision, usually - often several months.

If you don't have any luck with the PCT, there are various charities which will provide a grant or an interest free loan to enable people on low incomes to buy a nebuliser. I have a list of charities who may do this, but it's in a place that isn't readily accessible to me right now (stairs... grrr) - if it does come to that, I can try and look it out for you. I would be surprised, though, if the PCT didn't give in and agree to fund it on the basis that I have described above.

Hope this helps

Em H

Hi Simi

Good luck with your PCT. It's a shame there seems to be a PCT lottery as it's 1 NHS. Having just spent all afternoon at chest clinic (they changed my appt with cons to 2 hours after the lung function tests instead of straight after - was not amused!) am now the owner of a huge blue costa neb. Am definitely considering buying a little one too tho (micro air i think Em H!) as otherwise will turn into a weightlifter lugging it around, plus it's too conspicuous to use at work! But experience of getting one was painless - no question of having to buy one, just given one on long term loan with filters, mouth pieces etc and told will be replaced in a year. Amazing how different experiences you can have!

Edited to add: Don't worry EmH - has been prescribed by my cons in severe asthma clinic and GP happy about it too - and have strict instructions of how to use it and when to seek help.

Hi everyone, thank you so much for your replies, I am going to raise this with my GP again

take care xx

When I first had a home neb 12yrs back I loaned one off my gp and he started the nebs to stop me being admitted just for nebs at the time.

Then after about 6yrs I bought my own and recently had a new neb (6mths back) as they dont seem to like the sheer volume of use they get from me!

My local hossie loan nebs but big old fashioned and noisey ones so I prefer mine as its quieter and is small enough too carry and plug in wherever I see a plug free!

If you get your own nebuliser and the consultant gives you a letter to give to your gp stating what to prescribe then there shouldnt be a problem but I know some people who get there nebs from the hossie pharmacy while at clinic due to their chemist having issues.