Can I get S9 Elite & P10 Pillows on NHS??

I was wondering if any UK NHS CPAP patients had been given an S9 Elite or P10 Nasal Pillows for free on the NHS, or did you have to buy them yourself? I've been given an S9 Escape and Mirage FX Nasal mask, and don't really want to waste my time travelling to my nearest sleep drop-in clinic if they are just going to tell me that I need to pay for the improvements that I think are going to be most suited to me.

I left a voice message with the sleep studies unit asking about the Elite and the P10, and when they called back they told me to attend one of the drop-in sessions, but I got the distinct impression that I might have to jump through a few hoops testing the nasal mask, to get a pillow mask, and that I'd probably not get a specific one without paying for it myself, nor would I be able to get a different machine without buying it myself.

As I understand it, the Escape doesn't have Mask fit nor clinical efficacy data, but most importantly doesn't detect (and therefore deal with correctly) central apnea. I've got a history of sleep issues ranging from sleep terrors when I was a child, to nocturnal epilepsy that I'm still medicated for. I've also got a series of hypoxic events going back through my medical history from a premature birth with post-natal complications, breath holding attacks as an infant, epileptic events with a subjective correlation to hypoxic events, and now sleep apnea so I think it's very likely that Central apnea could well be a factor for me.

Can I get an Elite on the NHS??

I live in Leeds and I just asked for a p10 they gave me one no trouble, don't know about machine.

Ask them.

Hi 01i,

I can't speak for the whole of the NHS. As you may know, even with NICE guidelines, policy on medical mattters varies from region to region. But going by the posts made on this forum recently from someone in Dorset, and what I know from my five years with the sleep service in Gloucestershire, a few things do seem to be common.

1. Although the machine is given to you "for free", it is in fact a kind of long-term loan. If you use it for the five years or so it takes to wear out, they will long-loan you another one. But if you give up treatment at any time, or make alternative arrangements, the NHS would like the one they 'gave' you back - so they can give it to another patient.

2. The policy in at least three areas - your East Sussex, Dorset, and mine - is to issue a fixed-pressure machine. And if you want to do better than that, then you will have to buy it yourself - which is what I did. I use a PR S1 561, plus humidifier, bought with my own money.

There may be exceptions to this policy, but I imagine they involve your sleep doctor(s) making the case for, and getting approval for, unusual expenditure. From what you say, you have quite a history, and if it was up to me ...

Having said that, I'm not the one to convince. You would have to persuade your doctor(s).

3. As far as brands go, it seems that Philips Respironics have got Gloucestershire sewn up. I've seen the store room full of them. From what we read here recently from Dorset, ResMed have got Dorset sewn up. And they use the Elite, I understand, because it has the cellular reporting function - and they can also make adjustments 'on air' too.

Whether or not that constitutes an argument for you being given an Elite or an AirSense instead of an Escape - again, you'd have to ask. But it may be that Eastbourne/ East Sussex have already bought 500 Escapes, and there's no more money in the budget.

4. With masks, the policy seems more easy-going. At my very first session with the physiologist (after diagnosis) we tried on half a dozen masks. And every annual follow-up since, we try on a couple more. I now have a Fisher Paykell, a Mirage Quattro, an Air, and a PR Amara. And you've just read that Leeds/ Yorkshire is quite happily issuing P10s.

-o0o-

Now ... having said all that, you may or may not know that neither the basic fixed-pressure CPAP (the Escape) nor the auto-adjusting APAP (AirSense) deals with centrals (some reports even say too high a fixed presure can cause them). If you have too many centrals, then you possibly need an ASV machine.

And I have to tell you this - the UK retail price of a Philips Respironics ASV is £4,000+ (I don't know what the equivalent ResMed UK price is, I didn't ask them). So if you do need one of those, then your doctor(s) will have to make the case for you being treated with one. It seems to me you need to make an appointment to see your sleep doctor(s) - at the very least to find out how many centrals you are having.

My next scheduled appointment is not until May (although I don't see the point of it if the machine doesn't actual record anything useful). Therefore, I'm going to go in the the next drop-in session on Tuesday afternoon. Hopefully it'll be easy to get some sort of pillow mask even if it's a generation 9 mask like the Swift FX rather than a gen 10 mask like the AirFit P10. I'm waking up several times a night and each time the mask is noticeably leaking into my eye, as the night goes on it become harder to correct the leak without tightening the mask to the point is causes my gums to hurt.

I've done some research, and printed out a summary of the data and functionality of the various S9 options.

Escape
- Usage Data (hours used)
- Expiratory Pressure Relief (EPR)

Elite
- Usage Data (hours used)
- Efficacy Data (AHI, AI, HI, CAI, OAI, UAI, Events/sec, snoring)
- Mask Fit Data (pressure, leaks/sec, leaks/min, flow, flow limitation)
- Expiratory Pressure Relief (EPR)
- Central Sleep Apnea (CSA) Detection
- SmartStart/SmartStop

Autoset
- Usage Data (hours used)
- Efficacy Data (AHI, AI, HI, CAI, OAI, UAI, Events/sec, snoring)
- Mask Fit Data (pressure, leaks/sec, leaks/min, flow, flow limitation)
- Expiratory Pressure Relief (EPR)
- Central Sleep Apnea (CSA) Detection
- Forced Oscillation Technique (FOT)
- SmartStart/SmartStop

Hopefully by pointing out that the escape doesn't track anything other than usage, I'll be able to get an Elite or an Autoset. I think it's a little bizarre that the Escape doesn't even record AHI info, I also find it strange that the technician mentioned we could get info from the 'I' button, which is not actually the case (other than usage which I would know anyway).

I really think the SmartStart/SmartStop would be useful too. There have been a couple of times when I woke up and then went back to sleep with the mask on, and the machine not running. Pressing the button doesn't have a 100% success rate of starting the machine, and I don't really notice the air unless I put my hand over the escape valve to check something is blowing out

I know that East Sussex trust has an arrangement with Resmed based on the masses of Resmed advertising, and the big cabinet of ResMed equipment in the lobby, and I know that they don't have the gen 10 devices because I asked about the Resmed sleep info website, and they said the machines don't work with it. Resmed don't seem to sell the gen9 equipment any more, but the AirSense AutoSet 10 is £670, the HumidAir is £75 and a P10 is £105 (plus VAT and postage). There is no way I can afford £1000 to buy it all myself