Convincing the NHS to give me the best treatment possible?

[OddRancid]

Hi I have recently been diagnosed with OSA and will soon be getting a CPAP machine. Thankfully I live in England and the NHS will be handling the costs. I'm due to attend an appointment where I'll be given a trial auto CPAP machine to determine what my needs are. My understanding is that they will use the results from the auto to determine my ideal pressure for a fixed pressure CPAP. Apparently the NHS don't often give patients auto CPAP, instead favoring the cheaper fixed pressure versions. I've been told that I can expect a better chance at successful therapy (and better comfort) with an auto CPAP instead of a fixed pressure and would like to present the best case possible for being given an auto over the fixed CPAP.

My question is, what can I say that may give me a better chance at being given an auto CPAP and has anyone else experienced this with the NHS before?

Also I would like to share some information from my overnight oximetry study incase you had any thoughts about them or if they happen to prove a good case for an auto CPAP. Thank you.

Events per hour : 40
Total Events : 288
Min Dip SpO2 : 55.10
Mean SpO2 : 92.98

Time SpO2 :
<92% 02:06:34
<90% 01:32:33
<88% 01:07:38

Total time : 07:11:11

[zoocrewphoto]

Not sure how willing they are to work with you over there. I can tell you that the most supported medical reasons for an auto machine is if there is a noticeable difference between your needs most of the night and during REM and/or back sleeping. For example, when sleeping on my side without REM, I can get by with 11 or 12. But when I roll onto my back, I need to 15-17. If I were to sleep all night with a pressure of 12, I would still have a lot of events and would not be well treated. I can spend hours sleeping on my back. But I don't need all night or even half the night at 15-17. Once the pressure starts going up, I get a little uncomfortable and roll back onto my side. So, the increased pressure actually reduces my back sleeping time. It can prevent events AND reduce my back sleeping, so I really only need short spikes of increased pressure. For me, an auto machine is ideal.

Now, the question is, do you know if you are considerably worse on your back or in REM sleep? If you are, that will help your case. Testing at home with an auto machine will opefully give them several nights of data. You can review your data with free software and even post it here. That would help you go into the appointment afterward with a good argument. If you see some wild swings in pressure, that may help your case.

Any idea how long you will have the trial machine?

[OddRancid]

Any idea how long you will have the trial machine?

I understand that it could be 1 - 2 weeks with the machine. I know that the NHS like to hand out the Resmed Airsense 10 Elites to the majority of it's patients but I don't know what they use for the trial period. One huge part of the therapy for me is being able to track my progress and review the data each night so I'd really prefer an auto machine. With any luck I will be able to review the data on the trial machine and I will be sure to post again with the data and see if there is any evidence to support requiring an auto machine.

I often move about during sleep so I believe I might require a change in pressure during the night. I'll be sure to tell the doctor about this and hopefully the trial machines data will support this.

[LSAT]

Any idea how long you will have the trial machine?

I understand that it could be 1 - 2 weeks with the machine. I know that the NHS like to hand out the Resmed Airsense 10 Elites to the majority of it's patients but I don't know what they use for the trial period. One huge part of the therapy for me is being able to track my progress and review the data each night so I'd really prefer an auto machine. With any luck I will be able to review the data on the trial machine and I will be sure to post again with the data and see if there is any evidence to support requiring an auto machine.

I often move about during sleep so I believe I might require a change in pressure during the night. I'll be sure to tell the doctor about this and hopefully the trial machines data will support this.

You can track your progress on the Elite the same way you track it with the Autoset. The difference is that the Elite is a fixed pressure machine while the Autoset can vary the pressure during the night.

[D.H.]

By using an auto CPAP during the trail period, they should be able to tell if you really need one or if fixed will suffice. I suspect that if you really need an auto, you'll get it. The U.K. health system is predicated on giving you what you really need.

If they don't want to give you an auto but you feel you really want one, see if they'll pay for a fixed and allow you to pay the difference (which is probably only 20% or so). Also, ask them to waive the VAT tax, as CPAP is a necessity (the worst they can say to either is "no").

[rick blaine]

Hi OddRancid,

You sound as if you know some things about the UK system - let me add a few more (and btw, you could do worse than going up to the search box at the top-left and typing in my user name, and then reading what I've posted before in answer to previous UK posters).

Treatment by the NHS differs across the UK, and although there are National Institute for Health and Care Excellence (NICE) guidelines which are meant for the whole country, the policy in each of the 150-or-so foundation trust hospitals and their sleep-medicine departments is decided locally - that is, by the board of your foundation trust hospital.

The policy for most foundation trusts at the moment is to treat at an AHI of 15 and above. And, as you say, to offer some kind of auto-adjusting machine for a week, or in some areas, for two weeks. This is done to find the pressure you are at or under for 90 per cent of the time. And then you get given, on a permanent loan basis, a fixed pressure machine, set to that pressure.

And just as a reminder for non-UK readers, under the NHS system - which treats roughly 89 per cent of the population - there will be no charge for:

- the initial appointment with a doctor, and referral for testing;
- the at-home sleep study (or sleep-lab study, if needed);
- the subsequent at-home treatment-pressure-determining (or 'titration') study;
- the meeting with a specialist nurse or sleep physiologist to try on a range of masks;
- the machine plus hose;
- the mask;
- an annual follow-up - or if it applies, on-going monitoring over the cellular-telephone network (which depends on the type and year of machine).

It's not too shabby a deal. The machine is yours for as long as you need it and use it. And if it ever breaks down or wears out, your local sleep department will replace it - the same day or if at the weekend, the first weekday.

All of which is a long way of my saying: I don't think there's much chance of you getting an auto-adjusting machine from your local NHS sleep department.

For one thing, I don't know of any cases where it has happened, and this has been my journalistic 'beat' since I became a patient several years ago.

For another thing, your local sleep-medicine department may not have an auto machine to give to you. UK sleep-medicine departments buy in bulk - mostly from Philips-Respironics UK or from ResMed UK. Their argument is: "Given that there is a budget, we can treat more people - and fully meet the NICE guidelines - if we standardize on fixed-pressure machines. That's where all our money goes."

Your argument would have to be: that you have exceptional symptoms, and an exceptional need.

The NHS jargon name for what you're talking about is an 'individual funding request' - and someone at senior doctor level would have to consider your request, and then make the case to the appropriate board.

The thing is, although your AHI numbers put you in the 'severe' category, and that O2 saturation for a total of 7:38 minutes is quite alarming, I'm not sure that those alone would qualify. There are people that my local chief sleep physiologist has told me about (without revealing any names or identifying info) who have AHIs in the 70s, and who are at much greater risk than you - who are nevertheless getting the NICE-approved fixed-pressure treatment.

What I'm saying is this: I think your chances of making the case are slight. No matter what anybody on this website may tell you - and there are some very-well informed and very experienced people here - your circs will most probably not be enough.

And what I'm suggesting is that you do what I do - buy your own auto-adjusting machine - but continue to be an NHS patient. You should find the staff at your local sleep-medicine department have no trouble with you doing that.

Mine doesn't. I continue to get all the other things on the list above - free follow-ups, free mask replacement parts, free trying out of new models of mask as they come along (I now have four different types), and support at any time between regular follow-ups if I need it.

At the moment, both Philips-Respironics UK and ResMed UK are offering deals on machines. And a machine costing you in the order of £600 should last you at least five years. Or £120 a year. Or 33 pence a night.

Half the cost of a Mars chocolate candy bar.

The telephone number of Philips Respironics UK (dialing from within the UK) is: 0800 130 0844.

The telephone number of ResMed UK (dialing from within the UK) is: 0800 907 7071.

Oh, and since you bring it up, it is my understanding that all machines now issued by the NHS are of the current generation, or the immediately previous generation, and are thus fully data-compliant.

[rick blaine]

With respect to the suggestion by D.H. that the NHS might offer part payment, or obtain and supply an auto-adjusting machine to be part-paid-for by them and the-rest-paid-for by the patient, my GP did wonder out loud about that. At the time, I had already bought and fully-owned my machine, but out of courtesy to her, next chance I got, I did ask the chief physiologist at my local sleep-medicine department what was their response to that idea.

And the chief physiologist said that the sleep-medicine department can't do that. The machine has to stay owned by them, because in the NHS it is not given to the patient - it is only 'permanently' loaned to the patient.

If you try the machine for, say, three months, and then give up treatment and say it's not for you, who then owns the machine?

The NHS would like the machine back - so they can clean it up and give it to someone else. They couldn't do that if there was some kind of shared ownership, or if they had to 'buy out your share'.

In other words, it's not a condo.

[Julie]

I think it may be important for the OP to realize that severity of diagnosis - the number of events you had on testing - does not correlate with how much (or little) pressure you personally need to keep your individual airway open with Cpap... apples and oranges... because even 1,000 events could be treated even with a low pressure setting if your airway is relatively wide compared e.g. to others with a particular narrow airway even if they only have a few events overnight.

[OddRancid]

Wow thank you everyone for your responses. I've reached out previously to a smaller community and had only a few replies so I wasn't expecting this many.

You can track your progress on the Elite the same way you track it with the Autoset. The difference is that the Elite is a fixed pressure machine while the Autoset can vary the pressure during the night.

Yes that is indeed the case. I didn't mean to imply that you wouldn't be able to without an Autoset. Keeping track of my progress is something I am very keen on doing and I really want to make the best attempt at treatment I can. I've read so many stories about CPAP not working for some people and I want to make sure I'm doing everything I can to make it work for me.

By using an auto CPAP during the trail period, they should be able to tell if you really need one or if fixed will suffice. I suspect that if you really need an auto, you'll get it. The U.K. health system is predicated on giving you what you really need.

If they don't want to give you an auto but you feel you really want one, see if they'll pay for a fixed and allow you to pay the difference (which is probably only 20% or so). Also, ask them to waive the VAT tax, as CPAP is a necessity (the worst they can say to either is "no").

I am hoping this is the case. I only want the best possible chance at sticking to the treatment as a lot of people find the fixed pressure to be uncomfortable. I have a tenancy to give up on things if they don't pan out smoothly first time and I am keeping it in mind that this is my health that is at stake and I need to really give this a good try if I have any hope of getting better.

Hi OddRancid,

You sound as if you know some things about the UK system - let me add a few more (and btw, you could do worse than going up to the search box at the top-left and typing in my user name, and then reading what I've posted before in answer to previous UK posters).

Treatment by the NHS differs across the UK, and although there are National Institute for Health and Care Excellence (NICE) guidelines which are meant for the whole country, the policy in each of the 150-or-so foundation trust hospitals and their sleep-medicine departments is decided locally - that is, by the board of your foundation trust hospital.

The policy for most foundation trusts at the moment is to treat at an AHI of 15 and above. And, as you say, to offer some kind of auto-adjusting machine for a week, or in some areas, for two weeks. This is done to find the pressure you are at or under for 90 per cent of the time. And then you get given, on a permanent loan basis, a fixed pressure machine, set to that pressure.

And just as a reminder for non-UK readers, under the NHS system - which treats roughly 89 per cent of the population - there will be no charge for:

- the initial appointment with a doctor, and referral for testing;
- the at-home sleep study (or sleep-lab study, if needed);
- the subsequent at-home treatment-pressure-determining (or 'titration') study;
- the meeting with a specialist nurse or sleep physiologist to try on a range of masks;
- the machine plus hose;
- the mask;
- an annual follow-up - or if it applies, on-going monitoring over the cellular-telephone network (which depends on the type and year of machine).

It's not too shabby a deal. The machine is yours for as long as you need it and use it. And if it ever breaks down or wears out, your local sleep department will replace it - the same day or if at the weekend, the first weekday.

All of which is a long way of my saying: I don't think there's much chance of you getting an auto-adjusting machine from your local NHS sleep department.

For one thing, I don't know of any cases where it has happened, and this has been my journalistic 'beat' since I became a patient several years ago.

For another thing, your local sleep-medicine department may not have an auto machine to give to you. UK sleep-medicine departments buy in bulk - mostly from Philips-Respironics UK or from ResMed UK. Their argument is: "Given that there is a budget, we can treat more people - and fully meet the NICE guidelines - if we standardize on fixed-pressure machines. That's where all our money goes."

Your argument would have to be: that you have exceptional symptoms, and an exceptional need.

The NHS jargon name for what you're talking about is an 'individual funding request' - and someone at senior doctor level would have to consider your request, and then make the case to the appropriate board.

The thing is, although your AHI numbers put you in the 'severe' category, and that O2 saturation for a total of 7:38 minutes is quite alarming, I'm not sure that those alone would qualify. There are people that my local chief sleep physiologist has told me about (without revealing any names or identifying info) who have AHIs in the 70s, and who are at much greater risk than you - who are nevertheless getting the NICE-approved fixed-pressure treatment.

What I'm saying is this: I think your chances of making the case are slight. No matter what anybody on this website may tell you - and there are some very-well informed and very experienced people here - your circs will most probably not be enough.

And what I'm suggesting is that you do what I do - buy your own auto-adjusting machine - but continue to be an NHS patient. You should find your local sleep-medicine department have no trouble with you doing that.

Mine doesn't. I continue get all the other things on the list above - free follow-up, free mask replacement, free trying out with new models of mask as they come along (I now have four different types), and support at any time between regular follow-ups if I need it.

At the moment, both Philips-Respironics UK and ResMed UK are offering deals on machines. And a machine costing you in the order of £600 should last you at least five years. Or £120 a year. Or 33 pence a night.

Half the cost of a Mars chocolate candy bar.

The telephone number of Philips Respironics UK (dialing from within the UK) is: 0800 130 0844.

The telephone number of ResMed UK (dialing from within the UK) is: 0800 907 7071.

Oh, and since you bring it up, it is my understanding that all machines now issued by the NHS are of the current generation, or the immediately previous generation, and are thus fully data-compliant.

Thanks for your amazingly informative response. I may well go ahead an purchase my own Autoset device but only after I have explored the options with the sleep clinic. Ideally I would have liked to avoid spending what little money I have on a machine especially when they are available for free via the NHS but I will consider that when the time comes.

Also I believe the numbers indicate that my O2 saturation are in hours, not minutes. I didn't post the graph that came with the report as I didn't want to post too much information about myself but over the course of the 7 hours on record the graph shows that I was under 92% saturation at least 50% of the time.

I think it may be important for the OP to realize that severity of diagnosis - the number of events you had on testing - does not correlate with how much (or little) pressure you personally need to keep your individual airway open with Cpap... apples and oranges... because even 1,000 events could be treated even with a low pressure setting if your airway is relatively wide compared e.g. to others with a particular narrow airway even if they only have a few events overnight.

This is very true. I was looking at an auto more so that I was comfortable than anything but I am now coming to understand that I may or may not find I am more comfortable on a fixed pressure. I almost have to wait and see what my trial week is like first.

[Hannibal 2]

Welcome to the forum! I wish I had taken the trouble that you have to be more informed about about OSA and CPAP when I was diagnosed 2.5 years ago. Instead I put my complete faith in the hospital to do the right thing, but to be fair something is better than nothing. NHS hospitals are tied by their own rules and agreements, and that can vary according to where you are in the country - you're familiar with postcode lottery! It's always worth discussing but if they won't give you an APAP then seriously consider buying your own, even if you have to borrow the money, this is serious and nobody cares about your health more than you do.
With Rick's advice, I bought my own APAP a few weeks ago after visiting the ResMed sleep Centre in Abingdon, £635, Honestly, I paid a lot more for my hearing aids!
It's the best thing I have done, I immediately noticed a big improvement in my therapy, but the most important thing is that I feel more in control of that therapy with the guidance of the good people on this forum. Well done for finding it before you embark on this journey, good luck and keep us updated.

[Julie]

Add... in my note I used 'Cpap" generically to make pt about severity vs pressure setts, but it applies equally to Apap.

[mrbreezeet1]

I hope you have positive results quickly.
I am having problems getting positive results.
One thing, I DID NOT HAVE , was
The meeting with a specialist nurse or sleep physiologist to try on a range of masks
although they told me there was to be this big "Fitting"
Now they are giving me the run a round, and passing the buck to the people that supply the equipment.
The visit back to the doctors office was a waste of my time, the the insurance company's money.

[OddRancid]

I hope you have positive results quickly.
I am having problems getting positive results.
One thing, I DID NOT HAVE , was
The meeting with a specialist nurse or sleep physiologist to try on a range of masks
although they told me there was to be this big "Fitting"
Now they are giving me the run a round, and passing the buck to the people that supply the equipment.
The visit back to the doctors office was a waste of my time, the the insurance company's money.

This is what I am most afraid of. I've spent years feeling tired all the time and I can't wait to feel the improvement. I'm really hoping to be one of those people that feels the change on night one but I'm trying to keep realistic expectations.

[mrbreezeet1]

I hope you have positive results quickly.
I am having problems getting positive results.
One thing, I DID NOT HAVE , was
The meeting with a specialist nurse or sleep physiologist to try on a range of masks
although they told me there was to be this big "Fitting"
Now they are giving me the run a round, and passing the buck to the people that supply the equipment.
The visit back to the doctors office was a waste of my time, the the insurance company's money.

This is what I am most afraid of. I've spent years feeling tired all the time and I can't wait to feel the improvement. I'm really hoping to be one of those people that feels the change on night one but I'm trying to keep realistic expectations.

Yes, I was hoping for a miracle, but it didn't happen. Good luck yo you though.

[rick blaine]

Hello again OddRancid,

If I can offer up a correction to my own post ... I said earlier, "at much greater risk than you." And on reflection, I was a bit too casual with that. My apologies. An AHI of 40 events per hour carries more than enough risk, and should be treated promptly.

What I was trying to stress is that it may not be within the remit of the people treating you in Dorset to issue you with an auto machine (for your on-going use), and that - if they are at all like the people where I live, in Gloucestershire - they are currently treating other, equally-serious cases with a fixed-pressure machine - because that is what the NICE guidelines tell them is sufficient to do.

Also on reflection, whoever told you that you "can expect a better chance at successful therapy (and better comfort) with an auto CPAP instead of a fixed pressure ... " - that might be true, and might not be true. It depends.

If someone has 20 events per hour, and they come in bunches - corresponding, say, with REM sleep - then that person might well be better off with a rise in pressure for each cluster of events, and a lower pressure for the intervening, uneventful periods.

If someone has 40 events per hour, and those events are pretty evenly spread across each hour, then that's one 10-seconds-or-longer event every 90 seconds. With a pattern like that, even an auto-adjusting machine would be responding with a pretty-much-continuous higher pressure (as long as there are events).

It would be acting like a fixed-pressure machine - albeit with the ability to vary its pretty-much-continuous pressure from one night to the next, as required.

You'll know more at the end of your trial study - or 'titration' as it's called in the US.