Machine private or NHS?

[MargaretX]

Hi,
If you own your own machine, how do you get it serviced and your own needs checked, and possibly advice on masks? Is that outside the NHS?

I've only recently come to the UK. I owned my own machine. The NHS are prepared to give me a new one, with humidifier but without heated tube. They would service it and the settings would be reviewed by a consultant. I can do that in April.

Getting my own machine serviced by the NHS was not so easy. I had to sign it over to the Trust (OK but it cost me a few hours waiting, as no one saw this coming), and then there was a misunderstanding about settings - it should have been on APAP, not CPAP, but the technicians weren't allowed to change it without authorization from the consultant, who had left by the time the problem appeared. This was eventually got by phone. They also reinstalled a ramp, which I don't like. The consultant gave me a Swift FX but the machine was not set for it. (These two things I discovered at midnight). Communication between doctor, consultant, technicians and reception was not good. I finished up removing the ramp and setting the mask myself after midnight (menu is not in English). Probably illegal as I no longer own the machine, but I had to sleep. Then I did get rainout, even though it isn't that cold.

So either I get a new machine that belongs to the Trust, without a heated tube. Or I get a machine myself. In the latter case, how do I get it serviced? Do I make it over to the Trust, even though it might not be a ResMed? But then I would like to read the settings sometimes, for instance in just such a case as not being able to sleep on Christmas Eve because there have been communication problems at the hospital.

I gather most people go to the NHS once a year - is this just to service the machine, or do you get advice on your own sleep apnoea?

Many thanks for any help. I have had sleep apnoea for five years and I think you are rather on your own wherever you are.

[Sleep2Snore]

Your last line is almost correct, welcome to the NHS.
It very much depends where you are, the service varies from region to region.
Out of hours you are on your own and even during hospital hours
, the chances are you will be talking to an answering machine! Though most clinics try their best they are mostly under staffed and very busy.
Some trusts will service (check) the machine if bought privately, but most will tell you to set up an agreement with your supplier or the manufacturer. Most trusts will check the machine (some even if not supplied by them, but they are mostly just interested in the data, but will check the pressure if a CPAP but not adjust it normally, though some will if out of warranty) but not all. If you bought it abroad and the NHS trust said they will only look after it if you sign it over to them then I suppose you have two choices, do that or if the manufacturer has a service centre in the country, ask them for a service plan.
Both clinics I have been to said, if you buy your own machine the NHS will NOT look after it (some will) and most will tell you that if it was bought privately and set up by another clinic they will NOT look after it or you.
Most clinics will check your weight and give you advice and read the data from the machine if you attend the clinic but the machine and masks are your problem if you buy them yourself. However, as you come from abroad they have said to you that they will look after it and you if you sign the machine over to them, this at least gives you care under the NHS, but as you have found out, no doubt else where as well, once you leave the clinic it is hard to get any help and after hours is impossible! You are very much on your own.
The communication in the clinic you attended appears to be very poor, thankfully they are not all like that.

[Tigers Fan]

Options

Everyone on the supply side will tell you different - but - I have an NHS machine which I use all the time and has just been serviced. They check it for electrical safety. Now, as the machines are 12V, you could get into a hot bath with it and come to no harm. The machine would be kapput, of course!

Before I had an NHS machine, I had to buy my own because the NHS didn't have funding in those days. I ran it for years without serving and put it away in good working order when the NHS eventually supplied me with an APAP. They no longer supply APAPs and have no idea about them, same old same old.

If you can afford to buy, my advice is to buy your own - the best you can afford! Do not worry about servicing - run it till it stops working, if that happens. Use it in a clean environment. Buy one with a fairly local repair facility - within driving distance - else keep the original packaging for mailing it.

In April, get an NHS machine. Which one you use is your choice. A back-up is always useful and the cheaper one could be your travel machine.

Heated tube will be your own account, as will all the comfort accessories and filters.

[MargaretX]

Thanks very much, Sleep2Snore and Tigers Fan.
I am going to think this over.

When I turned the machine on after it had been serviced I found the ramp had been restored, and on top of that I have had 4 nights of rainout, although the first night it was not even very cold. A hose cover has not helped it completely.

I had actually decided to give the hospital another chance - my first meeting with them was great, and there were bound to be problems servicing a German machine (Resmed but I can't find anywhere to change menu language). If I could get an appointment before April, I could take the S9 and buy my own heated hose. They might give me help before April, because of course the rainout problem is going to be now, not in spring so much. And I think I need a DVLA form.

Ah, but I pay too much car insurance because I have an EU driving licence. That means if I get a UK licence, which is what I need the form for, I will have to have an annual confirmation that I'm being treated? but if I keep the EU licence can I escape this? EU licence is valid here till I'm 70 just like a UK licence. Then again there's my car insurance which ought to be informed.

My other plan was to buy a Fisher & Paykel Icon, but a difficult decision as there are others. Most recommended is the Resmed Airsense S10 for Her. But probably Tigers Fan's advice is best - get machine with heated hose now, then I can defer everything else till April.