Complete newb.....in the UK

Hi All,

Good to see an active forum here.

I don't have a CPAP machine yet, seem in short supply in the UK.

I suppose a few questions of anyone can offer advice, firstly on kit:

1) Resmed 11 much better than Resmed 10 ?
2) Dreamstation 2 really as bad as the reviews suggest?
3) I travel a lot for work, are they fairly portable?

Then a little about how I ended up here.

3) I've got to admit this is a surprise to me, I saw the Dr as I would fairly frequently wake up gasping for air, somewhat panicked. The polysomnography test says low oxygen 85% if I recall, long periods of not breathing (2mins or so), quite a lot of red lines on the graph for breathing desats (? I'm still learning the lingo). However I still suspect I am incredibly mild compared to many of the posts I read on here. Why ? Well I don't feel rubbish the next day, I do not feel like I haven't slept, I don't feel like having a nap during the day. Reading the forum I realise I must be incredibly lucky on this front and apologies !
4) I am fairly sure I have the gasping episodes far more when I suspect the dustmite levels are higher, more soft furnishings, older bed sheets etc
5) does this sound like a typical story ?

Thanks in advance, any guidance appreciated.

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

1) Resmed 11 much better than Resmed 10 ?

No. (Possibly not as good.) (Always specify AutoSet.)

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

2) Dreamstation 2 really as bad as the reviews suggest?

Yes.

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

3) I travel a lot for work, are they fairly portable?

They are totally portable. What is your concern?

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

polysomnography test says low oxygen 85%

What was your AHI? Which type of apnea do you have? Obstructive, central or complex?

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

4) I am fairly sure I have the gasping episodes far more when I suspect the dustmite levels are higher, more soft furnishings, older bed sheets etc

Dustmite situation should be considerably improved with CPAP. Your air will be filtered coming from your machine on the nightstand.

newnew wrote: ↑

Thu Feb 09, 2023 12:45 pm

5) does this sound like a typical story ?

Yes.

There are also machines marketed as 'travel' ones, and they're not bad especially if you check with airlines re available plug near seat, etc, but they do tend to be on the noisy side compared to others.

PS if you have Q's that might be (only) answered well by another UK member, Rick Blaine is the go-to one - knows everything and is very helpful.

Just avoid anything by philips. (ok, SOME of their light bulbs are OK)

Hi newnew,

1. You don't say whether you are being treated for your sleep apnea by the NHS, or whether you are being treated in the private medicine sector, and this matters in that:

(a) with the NHS, the sleep medicine department at the hospital your gp directs you to will issue you with a CPAP/ APAP machine on a permanent loan basis – that is, at no cost – whereas

(b) if you're seeing a private consultant, either on a flat-fee basis or on a medical insurance basis, you will have to pay for the machine out of your own pocket.

2. As you seem to have gathered from your background reading, there are two machine manufacturers who have most of the market in the UK – Philips Respironics UK in Chicester, England and ResMed UK in Abingdon, England.

Let me add to that by saying that there are roughly 150 foundation trust hospitals in the UK, and most of them now have a sleep medicine department or clinic. And almost all of the sleep medicine departments have standardised on one of these two manufacturers or the other.

What this means is that if you get referred to one hospital, you will be issued with the brand that that hospital has standardised on. They will do the choosing for you.

3. Machines are in short supply because there is an in-going recall situation involving one of the two leading manufacturers. The upshot of which is that the staff at said manufacturer are working their way through the list of existing and previous patients/ customers offering a replacement machine.

Meanwhile the other major manufacturer has had, no surprise, suddenly and significantly increased demand for their machines – both from those SMDs which have switched brand, and from individual UK patients – both NHS and private – who are voting with their wallets.

But it's a world-wide supply problem – to be met from the existing factories.

The re-call and re-supply situation is still going on, and it's ... complicated.

I will post more when I know more. I have talked to ResMed UK recently, and they were very forthcoming, but I have not been able to get any info – both for 'direct quote' and as 'background' – from PR.

4. You say you think your SA is 'mild' – your doctor should have introduced you the the four-part classification used not only in the UK but the world over:

AHI of 0 to 5, 'normal';
5 to 15, mild to moderate;
15 to 30, moderate to severe;
30 and above, severe.

If you are being treated by the NHS I can deduce that you must have an AHI of 15 or above – because that is the threshold where NHS treatment begins. (I know, Tough on those whose AHI is 13 or 14 – they have to fund themselves,)

5. You ask about traveling for work – both of the leading manfucaturers provide a special carrying bag, with room for mask, hose, power transformer ('or 'brick') and lead (US, cord). Whole thing weighs about two kilos. I have always found mine's adequately portable.

6. You may have twigged by now that both this site and this forum is based in the US. In time you may note that it has both a high Google ranking and world reach. These two phenomena are due in no small part to the high quality of its regular contributors ...

.. however, posters might not know as much about treatment in the UK. I try to do what I can. But if at any time on this site you don't get a current answer to your current question, you can always use the search function in the top left corner. If you use my 'handle' in your search, you may find I have answered your query, or one like it, before.

Thank you for all the replies, and advice. I can see I need to understand things better.

Richard I am being treated privately and I will almost certainly be paying for the cpap device myself. Sounds like the Resmed 10 is the easiest to get in the UK and seems to get the better reviews. I have to say it doesn't look the most comfortable thing to wear but guess you get used to it.

AHI - that may have passed me by, I will be sure to ask more in the follow up appt.

Reading the report I received, the Respiratory Events 15.1 per hour (same as AHI?), were made up nearly entirely by Obstructive Apnea, 13.9 per hour, 109 total, mean duration 24 secs, longest 136 secs. Next on the list was hypopneas, 0.6/hour, 5 events, mean duration 24.5 secs, longest 41.5.

I don't have a point of reference for these figures, I am basing my "mild" assumption on the fact it does not impact me the next day. If respiratory events = AHI then I think the figures confirm the mild>moderate thinking.

And you're correct in your assumption re AHI - apnea hypopnea Index. BTW, if you sleep on your back, it will provoke more hypops, so if you can get used to side sleeping (possibly wearing a towel stuffed backpack etc) it should lower that figure. And if you don't feel terrible in the daytime, that's also good of course.

Hello again, newnew,

Next package of info:

7. To treat OSA you need some form of Continuous Positive Airway Pressure (or CPAP) – or Auto-adjusting Positive Airway Pressure (APAP).

But you can't just rock up at a machine supplier and buy a machine. It is a classified medical device, and the supplier needs a prescription (or scrip) to cover him- or her-self.

In this respect, I know of at least one UK consultant who sees people on a private basis who has a small stock of machines and masks, plus a nurse to teach you how to use them. So he writes the scrip as the physician and then gives it to himself as the supplier – and all you know is that the cost gets added to your bill.

But not every private physician does this. Some write the scrip and send it to, say, ResMed, and your machine arrives by carrier. Others hand you the scrip and you have to contact the supplier yourself.

And for that – and because you are a beginner*– my best advice is this: get your machine direct from the manufacturer, not from a 'second user' dealer and not from any third-party new machine supplier.

The first reason I say this is that the warranty position in the UK is better (if you buy direct), and if there are any hassles, sorting them out is easier.

Another good thing (about buying direct from the UK manufacturers) is that both the two leading manufacturers are organised enough to automatically get you to fill in the VAT exemption forms, and to keep a copy on file for your next purchase. (There is no VAT applicable to personal health machines, which category includes CPAP.)

8. You mention the AirSense 10. The generally held advice on this forum is this:

a. get a machine that records all the key variables of your use and saves them to an SD card. Sometimes called a 'full data' machine. Full data is always better than just 'hours-of-use' data.

b. get an auto-adjusting machine and not a fixed-pressure machine. Auto-adjusting is always better than fixed-pressure.

If it is clinically desired or required to deliver fixed-pressure, then you can get an auto-adjusting machine to behave like a fixed-pressure machine, but not the other way round.

c. with Resmed, get the 'for Her' variant. This comes with an extra set of algorithms – algorithms which were initially designed to respond to female physiology – but which, it turned out, are helpful to quite a few patients of any gender. Ie, the variant is beneficial to some men too.

9. As to masks, the thing to begin with is this: is your nose mostly or always bunged up? Or can you comfortably breathe thru it?

If you can breathe thru your nose, then start with a nasal or nose-only mask.

If you can't breathe thru your nose, then a mask which covers both mouth and nose (sometimes called a 'full face mask' or FFM) is indicated.

There was a time when, twice a year, ResMed UK used to run open days in either their headquarters in Abingdon, or in a hotel function room in Bristol, where any patient – private or otherwise – could try on their range of masks with the machine running. But sadly, since 2020 and Covid-19, they no longer do this.

The doctor you are seeing privately should have some say in assessing you for a mask, and may even provide one. Or if they don't do that, they should be writing the scrip for a mask, which you will buy from, say, ResMed (if that is what the scrip says).

If your doctor does not do that, then I am limited by UK law in telling you what to do ...

.. but what I can tell you that the AirFit F20 is ResMed's current best seller, and it would appear from that fact that it suits the most people. Or to put it the other way round, most patients find they can adapt to it.

And as far as the paperwork goes, your own GP can fill out the scrip if you don't have a scrip from any where else. These days, the blank script form can be downloaded from the manufacturers – and it can be signed on-screen and e-mailed back.

-o0o-

OK, that's enough for now, newnew. It may be that your consultant has a routine for 'first use' and 'instructing the patient'. If so, you should follow their advice.

If on the other hand, you are left to more or less manage your own treatment, then you can always bring your next question(s) here.

* IMHO, I think that you can safely and profitably buy from a second-user supplier such as the American-based 'Second Wind' - once you know what you are doing. But for the first time out, my two cents is this: go direct to the UK headquarters of either of the two main manufacturers.