UK advice please (PLMD new dx)

Hi Guys,

I've been using CPAP prescribed by an NHS Dr for around 6 years now. Wasn't particularly severe initially but things got rapidly worse during an operation which went wrong, lost lots of blood, yada yada and they said during the operation my need for oxygen suddenly increased. Anyway, I was doing OK before the op but now feel way worse than before I started CPAP.
In hospital they just added oxygen to my device hose which was amazing but I assume noone does that at home?

Questions:
My NHS Dr got mad with me when he thought I had adjusted the machine pressure, I have a F&P Icon. Simple solution would be to just bump up the pressure but if they found out the would take the machine from me and refuse to treat me. Have you adjusted our NHS machine?

I'm in the south east, East Grinstead is close as is Haywards Heath/Brighton where I was seen before. Waiting lists all seem long to go back and get a new sleep study which is what they want. Any recommendations on how to get seen fast?

What kind of costs am I looking at to get this sorted out privately or is there a way I can just tweak my machine?

Thanks for your help people, really appreciate and suffering lots right now!!

PM Rick Blaine - UK expert over there.

I am in the UK, I have adjusted my machine, I have purchased my own Resmed ASV, my trust still work with me I have an annual checkup for compliancy and feed back to the DVLA. The things the NHS are interested in are.


How do you feel

What are your numbers like
Compliancy
Leak
AHI
Oxygen Saturation levels

I had no issues when I changed my machine settings I explained why and the nurse was happy.


There is no private coverage your better sticking with the nhs as far as I know.


Look here to learn how to get the clinician manual and change the settings for your machine

https://www.apneaboard.com/adjust-cpap- ... tup-manual


I’d thought I just also mention I have Never seen my Dr linked to tho Lung dept of my hospital I have only seen nurses. The Dr has done an interpretation of my 2 in hospital sleep studies. I have only seen the interpretation of the first one.



Jason

Well that's all very interesting. Just shows what a post code lottery we are all dealing with! Honestly my experience has been about the polar opposite of yours. lol! The NHS trust I am dealing with was failing and in special measures, maybe why there actually is zero follow up. I have seen the chest doc 3 times I think but noone monitors compliance at all! Once you're 6 months out you need a new referral to see the doctor and nurse wouldn't adjust settings afaik. They got me a new mask & head strap in hospital as I was badly leaking, so that's all good anyway now.

I feel terrible, really not safe to drive at all so have just been running around in taxis where needed. It's hard to know how much of what I feel is due to the medical emergency in the operating theatre plus operation recovery, or the addition of the apnea. When they had me on supplemental oxygen I definitely felt different but that was only days after the op and a while back so hard to compare now.

Long time ago I remember looking at my stats on the machine but totally forgotten how to do it. I'll get back to you when I've gotten to grips with that. I use the CPAP all the time, also been told I need to use it even if I have a nap which is a real pain!

Also wondering why you felt the need to buy your own machine?

Thanks for your input.

I bought my own machine as the one issued by the NHS was a brick and other than blowing and saying how long I had used the machine it told me nothing about how effective my treatment was so I bought my own Autocpap machine direct from Resmed EU (I have since sold that machine to another user in the UK)


That showed I was not being adequately treated but also that I needed a specialist machine that treats central sleep apnoea. My in hospital overnight sleep study indicated I needed an ASV machine, very expensive and a special request through the trust.... So I bought one lightly used from a user here and imported it, myself. It took 3 days to buy my first machine and 6month to upgrade to the ASV.


I do have a lightly used US purchased Resmed Autoset 10 I could sell you if your interested £200 it has been used for 203 hrs about 25 nights it does not connect to the EU MyAir comes with a heated tube and humidifier tank, and carry bag.

You would have access to your own treatment numbers. But may be different to the machines your trust use so may make working with them more challenging. But with the use of the machine and by using OSCAR you will be able to take charge of your own therapy, and the users here will be able to help you optimise you’re treatment.



What machine do you have ?

Not sure about the UK.

In the US, one is not supposed to adjust the settings, at least theoretically. The reality is that patients are doing this, and not being called out for this.

In fact, I'm note aware of even one case where the supplier took away a machine (or refused to send supplies) for this reason; at least inthe US.

Hi Jas_williams,

JustBreath234 says he's using a Fisher & Paykel Icon, which is auto-adjusting. Unusual in the NHS, where the majority of trusts have standardised on either Philips Respironics or ResMed, plus proprietary software.

F&P no longer make the Icon. But according to the net, it does come with some kind of data card.

Hi JustBreathe234,

I've been typing away for the last two hours, drafting a longer reply and setting out some of your options. And meanwhile, the thread has moved on a bit. In particular, you're telling us the foundation trust hospital you attend is in special measures (for US readers, has medical standards problems, or is in financial difficulties, or even both – with a 'fix-it' team sent in to run things) means a good half of what I drafted doesn't apply.

If you can keep logging in, I hope to have something for you – including about 'going private' if that's what you feel you have to do.

I say this, because sometimes people ask a question, and if they don't get a reply right away, they think there won't be one. And then they don't look in again. Which is their loss, and our unrewarding use of time.

BTW. the offer from Jas_williams is a good one, and from his posts here, I sense he's a careful, thoughtful user. In other words, he's not selling you a dud. The main issue is: if you buy a brand other than Fisher & Paykel, would you have to be transferred to another sleep-medicine department – one which has standardised on ResMed – to continue to get NHS treatment?

More later.

D.H. wrote: ↑

Tue Oct 29, 2019 8:46 am

Not sure about the UK.

In the US, one is not supposed to adjust the settings, at least theoretically. The reality is that patients are doing this, and not being called out for this.

In fact, I'm note aware of even one case where the supplier took away a machine (or refused to send supplies) for this reason; at least inthe US.

Please support your position that patients should NOT be adjusting your settings, and why should patients be called out for it.

The only people who need to be called out, are CPAP support personal who are neglecting proper adjustments.

OK, I'm back and been trying all day to work out best way to get data off of machine or even read it. All I can find is pretty useless stuff like current pressure, how compiant I am/have been. I'm a mac user, got the F&P app downloaded but when I try to read the USB it comes up with an error message and no idea how to fix that. I'm a mac user, the software has at least downloaded.

@Jas_Williams The need to go private in my area is due to wait times on the NHS which are 3-4 months for consultation, presumably few weeks for sleep study then further wait for results/action. It's bonkers as I'm already a confirmed hosehead but maybe that's just the special measures thing? Could even be 6 months before I get a pressure change!@%
Thanks for the offer of the machine. I'm thinking I'd rather see what's what with tests rather than stab about in the dark trying a new machine that might not work for me? It is possible I may have central apea issues, I have Ehlers Danlos Syndrome and such things are more common. The way all this happened as well was mighty odd so could be worth looking into deeper. Hospital did a chest x ray and it seems my lower lung lobes have an issue, I don't know exactly what but would like to look into this further.

So I called a local sleep centre and got a call back from Dr Peter Venn (his secretary happens to be away on leave atm). They could see me 9th November for £200, send me away with an oxygen monitor test kit which I return and they give me results - costs £300 incl interpretation. (thought others might find info useful. He did laugh at my poor little F&P Icon Novo (date on it is 2013) and said they stopped using them a long time ago and I think he said they use either a phillips or resmed now? My brain is scrambled so please take anything I say with a pinch of salt. Anyways, these amazing new machines upload info via the web and they can advise you on stats and pressures etc from anywhere in the world. Woo.

@Rik Blaine Bless your heart. I will await patiently for your wisdom and thank you so much for your time. I do have a quibble with the London hospital where all this got kicked off and will call them tomorrow to see if there has been any movement about getting me a faster sleep clinic appointment baring in mind the issues I had in hospital which weren't addressed or taken seriously leaving me 5 weeks later in a pickle. PALS are dealing with the sorry mess...

Thanks for your feedback we are here whatever you decide to do. I am not sure the benefit of an overnight home sleep test you already know you have an issue and a prescription for a machine. What is the objective of the overnight test ? Will it be whilst using your existing machine ?


Also the machine information downloadable from the internet on these new machines is not as good as the information availiable for download from the SD card using OSCAR which allows breath by breath analysis

The Icon Novo is an entry level machine and I don't think it has anything to report beyond pressures used and hours of use
https://www.cpap.com/productpage/fisher ... ap-machine

When I see

Compliance Reporting

that usually means all you get is hours of use.

If you can't find AHI anywhere on the machine then I doubt being able to use the software will show you anything.

You might go here and request the provider manual for that model machine and see if it says anything about a special area where you can turn on viewing of any of the efficacy data.

https://www.apneaboard.com/adjust-cpap- ... tup-manual

Thanks Pugsy, I've found a provider manual but isn't specifically for the Novo model I have. Seems the USB stick is only programmed to send info via the net to my nurse or whoever. Can't seem to access or hack it, the files are locked.

You might want to reconsider that offer about the slightly used machine.
It's a fair offer and it's a full efficacy data machine and easy to get that data.
If for some remote reason you should end up needing a different machine....you can always sell the unneeded machine here on the forum and not lose any money.
I don't remember for sure but those old F & P machines may not have flagged centrals anyway...and I know for sure that the AirSense 10 machines do.

Hello again JustBreathe234,

If you will allow me to, let me walk you through your options.

1. You've got to the point where it seems like a good idea to have a fresh sleep-study.

2. You don't want to wait for a study provided by the NHS. You're not sure, as an existing patient, how long you might have to wait for one, not sure whether you might be seen quickly, or not ... And/ or anyway, you haven't asked.

What you do know is the waiting list for 'fresh cases' in your area is three to four months (which, btw and compared to the rest of the UK these days, is not unusual).

3. You've done some research and there is a private doctor near you who will see you – £200 for the appointment, and another £300 for an at-home sleep-study. Making £500 in total.

You probably didn't know to ask, but is this £300 sleep-study a 'three-channel' one, or a simpler 'pulse-ox' one? Three-channel is slightly more reliable, especially if throat stricture might be involved, as it often is with Ehler-Danlos.

4. While that £200 fee for the consultation is not unusual at current rates, you may not know that a simpler-but-highly reliable form of sleep-study is available, and for a lot less than £300.

A firm called Eu-Pap in Walton-on-Thames does an at-home sleep-study using the Watchpat device, for £199. And ResMed UK in Abingdon offers their at-home sleep-study using the same Watchpat device for £144. And you don't need a doctor's referral or covering letter to request either.

(FYI, both these are all done by post. They mail you the equipment. You use it over-night and send it back. They mail you the results.)

I'm saying the above to give you options. Now ...

5. Whatever kind of sleep-study you get, and regardless of 'from whom?', we come to the same one question:

What do you hope will happen once you have the results of the sleep-study?

a. Is it, for example, that you think you'll be able to go back to your hospital doctor or the sleep-medicine department and say: "I need an auto-adjusting machine"?

I don't know if that would happen. While it's true that some NHS foundation trust hospitals are now issuing auto-adjusting machines as standard, we still don't know if the hospital that's treating you does. So you might not get one from the NHS.

On the other hand, if you were to buy an auto-adjusting machine yourself, then a new Dreamstation model from Philips Respironics UK will cost you £600, and a new Airsense 10 Autoset machine from ResMed UK will cost you £680.

b. Is it, for example, that you think you'll be able to go back to your hospital doctor or the sleep-medicine department and say: "Look at these results – there are quite a lot of centrals – which is a symptom which often presents in cases of Ehlers-Danlos. I need a bi-level machine – or even an auto-adjusting bi-level machine"?

If they were to agree with you, they might make an 'individual funding request' (a request to spend extra money on your case) – but it might take a good bit of time before that got approved. And what would you use in the meantime?

On the other hand, if you were to buy a new bi-level machine yourself, it would cost in the range from £900 to £1200.

c. Is it, for example, that you think you'll be able to go back to your hospital doctor or the sleep-medicine department and say: "Look at these results – they show the kind of very varied breathing which is best treated by an ASV machine – a machine that figures out 'on the fly' how to respond to each breath, one-at-a-time"?

And if they were to agree with you, they might make an individual funding request ¬– but it might take even longer to go through the system – because, if you were to buy that kind of machine new and yourself, it would cost you something like £4,500.

6. There is another option. And it's the one that Pugsy above and Jas_williams above have suggested. Buy the ResMed auto-adjusting machine you are being offered, now, at £200 ... because (i) it really is a bargain, and (ii) it's better than what you are currently using, and (iii) you can continue to pursue even better treatment while using it ...

.. and (iv) it seems to me that you don't know this, but you can use this model of auto-adjusting machine as a kind of on-going sleep-study. It really does collect a lot of data. And the data is in a form that the hospital staff can read on their PCs with ResMed's software, and you can read on your Mac computer using the shareware software.

I'll grant you that this machine does not tell you about oxygen saturation*, and it does not tell you about throat strictures. But in every other respect it gives a wealth of diagnostic information.

* If you wanted to, you could even do a ResMed at-home Watchpat sleep-study in parallel with this ResMed auto-adjusting machine to learn more about what's going on with you.

I really do recommend it.

And as Pugsy also says, if eventually you do move up to a more advanced machine, you can always sell this one. Ie, if that happens you'll get all of your £200 back.

Seems to me that's a better option than the £500 outlay you spoke of.