UK Pre-Noob - Lots of questions

[Julie]

To back up the earlier note on this - no one travels with water in the machines... just empty it first and refill wherever you end up sleeping... and remember that humidity is a choice, not a mandatory part of therapy, so depending on the local climate, etc. you might not need it at all, or find you need to refill more often than otherwise.

[rick blaine]

For MopTop:

PS 1. The reason that most private-sector sleep-study places in the UK won't give you a prescription is because they can't. They are not legally permitted to do so. One I know gets its reports prepared by someone with a degree in biological sciences – but not a medical degree.

PS 2. If you go up to the top-left corner of this page and type in either my handle or 'DVLA', you'll find previous replies I've made on the subject.

[prodigyplace]

What I do isf I am traveling in the morning is empty the humidifier tank and stuff some paper towel or tissue in the tank to absorb the little remaining water left.

[MopTop]

1) There should be no problem with leakage when you travel - you pull out the water reservoir, dump the water, and travel with the two slightly separated. No leaks. You should get a bag with the machine.

2) In general, the mask has a short hose which then joins to a long hose to the machine. Just pull the mask off at the join, and you can wander anywhere you need! You will look silly though!

Well that won’t be anything new

Thanks for the info about leakage - makes sense!

[MopTop]

You can mix brands of masks & machines because they all use a standard size hose connection.

That's very sensible - and useful!

The firm called Eu-Pap

This was the company that I first looked at for a private in-home study. I have also discovered that ResMed do one the is a quote from an email that I got from them this morning

Sleep Screening Service

To complete a sleep screening we require your GP details so we can update both of you with the results. This can identify when there is clear evidence of sleep apnoea or no significant sleep apnoea, however sometimes if the results are borderline you may require further more detailed investigations such as a diagnostic sleep study. If the results show a positive result for sleep apnoea your GP can either refer you to your local NHS or a private sleep service for treatment. It is important discussing the results with your GP as sleep apnoea can be an indication of other medical conditions. To purchase CPAP equipment through us following a sleep screening we require a letter of referral from your GP so would suggest discussing this with your GP prior to booking the test. The cost of the sleep screening is £144 plus £12 P+P (and £150 refundable deposit).

I have no idea what kind of a screening it is, but I would assume pretty similar to the Eu-Pap one by the law of averages and market competition. I intend to call them on Monday and try and get a bit more info about it. I like the idea of the ResMed one as it involves the GP - not something I would normally try and encourage ( ) except in helps with the "foot in both camps" which may prove useful down the line.

you might call both the Thoracic unit at RBH and Blandford sleep clinic and ask them which brand they have standardised on.

And then you can make an informed decision.

Very good advice - so I just tried to call them but they must close by 5pm on a Friday so I shall be on the phone first thing Monday morning.

PS 1. The reason that most private-sector sleep-study places in the UK won't give you a prescription is because they can't. They are not legally permitted to do so. One I know gets its reports prepared by someone with a degree in biological sciences – but not a medical degree.

That explains the annoyingly vague and unhelpful responses I have been getting!!

PS 2. If you go up to the top-left corner of this page and type in either my handle or 'DVLA', you'll find previous replies I've made on the subject.

OK - will do - thanks for all your help

What I do isf I am traveling in the morning is empty the humidifier tank and stuff some paper towel or tissue in the tank to absorb the little remaining water left.

Ah - good plan!!

Thanks for all your help people - I now feel like I have a plan of action and that maybe there is a light at the end of the tunnel that is not a train coming towards me!!

One more question Rick, where can I download the form that the GP signs as a script substitute? I've tried Googling but ended up down a rabbit hole!

[rick blaine]

Hi MopTop,

I didn't know that ResMed had started offering an at-home test – my bad, since I'm usually up on these things. But I just checked I'm au fait now with the info on both the Philips Respironics UK website and the ResMed UK website – and it's clear that both manufacturers have up-dated their UK-customer-facing process.

With respect to ResMed UK, it seems you can avail yourself of their £144 at-home sleep-study without your GP being in on the requesting – but that they wish his or her name and address so that they can inform both you and the GP of the results – which means your GP will be on on it, should it come to the GP taking it further medically within the NHS, or you taking it further by purchasing a machine.

I can't tell from what they say just what that £144 study involves. But from the fact that they mention, as a possible next stage, a 'diagnostic sleep-study', that makes me think the £144 affair is some kind of 'fat-wristwatch' only study, and not a 'three-channel' one.

As to a download-able scrip form (from ResMed UK), it would appear they don't have one now. And instead, they want a letter of referral from your GP. Sounds like a distinction someone from the legal department has put in – as protection for ResMed. A signature on a form can be faked. A properly-worded letter on headed notepaper has more standing.

With respect to Philips Respironics UK, I looked at their UK website just now, and found it very confusing. I got some info, but when I tried to go back a page to double check some details (because I'm a journalist, and that's what I do), I got nowhere.

From the bit I did get, they now have a five-stage process. First, they show you some version of the Epworth questionnaire. Then, they suggest their at-home sleep-study (called 'Alice NightOne', and costing £250). And then if you do the sleep-study, and they have it analysed, they get into what could come next.

It was at this point, the site 'hung' on me, and I couldn't go either forward or back.

Which means I couldn't find the prescription forms.

As it happens, I have on my hard drive a blank copy of their download-able scrip form of five years ago. If you send me a private message (see top of the page) with a UK e-mail address, I can send it to you.

And since both Philips Respironics UK (0800 130 0844) and ResMed UK (0800 907 7071) aren't being entirely clear, I suggest you by-pass their websites and speak to them directly, and ask a few things.

For example, is the ResMed £144 sleep-study done with the WatchPAT device? Or with a previous generation of pulse-ox recorder?

And is the quite-a-bit-more-expensive Philips Respironics sleep-study one-channel or three-channel?

Also, it may be that PR have changed their policy on scrips – and now they want to know if you really did have a sleep-study done before selling a machine to you. If so, shouldn't they make that clear?

(The blank download-able form I have does not ask you to state if you've had a sleep-study, just that a doctor wants you to have a machine, and for it to be set to these pressures.)

OK, MopTop, this for now – except one more item. When you ring the Blandford, you might ask them if they routinely issue fixed-pressure machines or auto-adjusting (pressure) machines to their patients. It's one of those policy things that varies from area to area – and is, I think, important to your treatment, and to your decision as to whether you buy your own machine or not.

[prodigyplace]

Another way to send a private message here is to just click the bubble beside "Contact: near the top left of a posting.

Auto adjusting pressure machines are preferred. Mos people respond better to auto adjusting pressure but the machine can also be set to a fixed pressure if desired.

[Jas_williams]

MopTop if your interested I have a lightly used (900 hrs Used About 4 months) Resmed Autoset 10 purchased direct from Resmed in the UK I am willing to accept £300 including Shipping. I don’t have a mask to suit. Or I have an imported from the USA Autoset 10 only 203 run hours for £200 including shipping both used in a non smoking environment.


But as Rick rightly says your trust may not use Resmed machines mine does.



Why am I getting rid of these machines, I have been moved onto an ASV due to central Apnoea I was issued by my trust a Resmed S9 escape which provides no detailed information so I bought my own machines, I work in Ireland every other week so to save me flying with a machine every week I bought one from the USA to save money.

PM me if your interested.



Jason

[JennySawyer]

I had the polysomnography on 8th January (I can't remember how long I waited for it after I was referred), I went back to the clinic for a follow-up appointment/results on 19th March & they gave me the CPAP equipment on that day; on the NHS.

[Jas_williams]

I did an overnight test, got results when returning the machine, 1 month later I had a machine.

[JennySawyer]

My BMI is 30 (yes, I know, I'm obese, I just love bad food so much.....). The sleep disorder clinic that I attended is in a different county to where I live & about 20 miles away, it's easy to get to if my partner drives me but by public transport it's a pain (I am a non-driver), so I'm pleased that my next consultation will take place over the phone. I had the polysomnography earlier this year at age 46, I first complained to a GP about tiredness when I was 15...... I've suffered from depression all my life & I suspect that the medical profession just assumed depression to be the sole cause of tiredness.