UK and NHS...New clinic, new machine troubles.

I've recently been referred to another sleep clinic in the local area after being discharged from the clinic I attended in my previous town. Unfortunately I have been given a constant pressure machine when I have previously been told at the old sleep clinic that an autoset was appropriate.

On looking at the sleep records after loaning me a Resmed Airsense 10 Autoset for 3 weeks, the clinic said there's no point in them paying for an autoset when cpap is half the price and the numbers on my sleep recordings don't require it.

During the use of my S9 Autoset with H5i I had no problems and slept relatively well. Changing to the Airsense 10 autoset wasn't too bad either and I slept pretty much as well with that machine, until they exchanged it last week that is.

Before leaving with the constant pressure machine, the clinician showed me the pressure levels I was getting on the autoset machine and told me that I would probably be ok with cpap therapy at around 12. I could clearly see on screen that during my sleep on different days for that past week that the machine was providing anywhere between 7 and 16. This to me seems that 11.6 average would not be adequate, yet I took the machine home and tried to have a little faith in the clinicians advice. Boy was I wrong.

Waking the next day just like I had been before therapy and before my diagnosis, with that horrid headache and absolutely shattered feeling.

I increased the pressure to 12 for the next day and not much changed, I still felt like crap.

Increasing the pressure again I set it to 13 but this time I felt like crap and had a sore dry mouth and throat in the morning, something I never got before.

It seems to be that, depending on my sleeping position, which changes regularly, I need different pressures throughout the night, which is what the previous sleep clinic told me and is the reason why they provided an autoset machine for the last 6 years. Does it sound like a case for me taking the elite machine back to the new sleep clinic and requesting they exchange it for an appropriate autoset machine as I don't have issues with them but I do with with the constant pressure elite model? Obviously I need to get rid of the inadequate pressure induced headaches and the constant higher pressure induced dry sore throat and mouth. I can't do this with a machine that doesn't adapt.

Any advice would be appreciated.

They are lying to you...The difference in retail price between a fixed pressure and autoset machine is only about $50. If this is an insurance transaction, the Ins company pays the DME the exact same amount for either machine. Demand an Autoset. If necessary, get your doctor to indicate on the prescription..AUTOSET.

Is insurance paying for your machine or are you self pay or maybe have a really high deductible?

The HCPCS billing code for the fixed cpap machine is E0601 and the billing code for the AutoSet is also E0601.
If insurance is paying...they pay off that billing code so the DME gets the same amount of money no matter how much it costs them wholesale. Guess which machine they will push???

Now if this is your money you are spending and insurance isn't involved they can charge more for the AutoSet.

This is in the UK on the NHS so no insurance is involved. The local area clinic is run by the NHS at the local hospital but these clinics are administered a little differently up and down the country. The machines are given out on a case by case basis and I was told that if I required an autoset that they would have to order one in for me as they only keep stock of the constant pressure variants. I find that hard to believe because the clinic deals with every chest and respiratory condition, not just Sleep Apnoea.

All I can say is that I'm having terrible trouble no matter what pressure I use. Waking feeling unrefreshed with lingering headaches on the lower end or waking feeling like crap with a sore throat and dry mouth with the higher pressures.

Also on the lower pressures my numbers were skewed showing a bit more AHI than when I used the autoset machine and when I made slight adjustments and increased the pressure level, it started triggering central apnoeas and causing me to have a sore throat and dry mouth even with maximum humidification.

I'm worried that they will try to keep me on this constant pressure machine and I'm also worried that I will never be able to tolerate it, hence the reason I feel they should provide the type of machine that I have been using for the last 6 years which worked well for me, a Resmed S9 Autoset.

What should I do?

Good luck getting the NHS to do what you want them to do...from what I hear they aren't so quick to supply the more expensive machines unless there is a clear and urgent need. You can try.....if you don't ask the answer is always "no"..

Otherwise if your pocketbook permits there is always self purchase...either from ResMed in the UK (will require a RX) or even ordering what you want from the US.
Check out secondwindcpap.com if you want to try purchasing yourself. They won't require a RX from an international buyer.
Good people to deal with.

I am going to add UK to your topic...so that form member Rick Blaine will see it and offer his usual advice to UK members dealing with the NHS and not happy with what they are getting.

Thanks for that. Another question I have, is it normal for someone who's been on an autoset machine, then switched to cpap randomly, to have these constant issues that require moving back to autoset?

The point is that autos can do plain cpap mode, but cpaps won't do auto, so why not insist on the options of auto if you have the choice?

Julie wrote:The point is that autos can do plain cpap mode, but cpaps won't do auto, so why not insist on the options of auto if you have the choice?

The hospital told me that their normal course of action was to review the numbers they see on the autoset pressure graphs after a 3 week trial on the autoset machine, then move people to the cpap machine and set pressure accordingly if their requirement doesn't vary much.

I saw mine was between 7 and 16 for that previous week ( as per the readout on the computer screen when she downloaded the information from the memory card into the computer ) but the specialist pointed to it and told me that my pressures were 11 to 15 which she said wasn't much of a variation, cpap would most likely be OK and that my numbers didn't warrant an added expense to the NHS of the Resmed Airsense 10 Autoset over the Elite cpap version. The way it was worded by her seemed to firmly imply that they would rather not spend more money to provide the autoset machine, which to me is a bit counterproductive as I would have to come back complaining anyway and get them to realise that ineffective therapy is just as bad as no therapy.

The mind boggles.

Should I go back and tell her I'm having issues and want to be moved back onto autoset?

Fixed cpap pressures will work for a lot of people if they don't have things happen during the night where pressure needs can vary much.

Sleeping position will cause pressure needs to change in a lot of people. Like it's quite common to need more pressure when we are on our backs when compared to what we might need when we are on our sides. Not everyone will have a big difference but a lot of people do.
I know a person who needs 18 cm pressure when on their back an only 9 cm when on their side.
And while we might say "just stay off your back"....lot easier said than done for a lot of people.

REM stage sleep will often also cause a need for higher pressures. I have that myself. I might need 6 to 8 cm more when in REM than the other stages. REM makes up about 20% of the night...for me to deal with REM with a fixed pressure machine I would have to use 6 to 8 cm more pressure ALL night long just to deal with REM. That doesn't make much sense to me...and sure wouldn't be very comfortable.
We have zero control over where and when we get REM....common sense will say to get a machine that can auto adjust and let the machine sort it out.

Unfortunately some doctors and equipment suppliers don't seem to have much common sense especially when counting pennies.

Go back and tell them that you are having issues....they won't know unless you become the squeaky wheel.

Pugsy wrote:Fixed cpap pressures will work for a lot of people if they don't have things happen during the night where pressure needs can vary much.

Sleeping position will cause pressure needs to change in a lot of people. Like it's quite common to need more pressure when we are on our backs when compared to what we might need when we are on our sides. Not everyone will have a big difference but a lot of people do.
I know a person who needs 18 cm pressure when on their back an only 9 cm when on their side.
And while we might say "just stay off your back"....lot easier said than done for a lot of people.

REM stage sleep will often also cause a need for higher pressures. I have that myself. I might need 6 to 8 cm more when in REM than the other stages. REM makes up about 20% of the night...for me to deal with REM with a fixed pressure machine I would have to use 6 to 8 cm more pressure ALL night long just to deal with REM. That doesn't make much sense to me...and sure wouldn't be very comfortable.
We have zero control over where and when we get REM....common sense will say to get a machine that can auto adjust and let the machine sort it out.

Unfortunately some doctors and equipment suppliers don't seem to have much common sense especially when counting pennies.

Go back and tell them that you are having issues....they won't know unless you become the squeaky wheel.

OK thanks for that. You've made me think about all that in a much more ordered fashion, together in one little neat package.

I will tell the specialist pretty much what you said as I was thinking about doing that anyway. As you say, needs change during the night. Constant pressure wasn't for me 6 years ago and certainly isn't for me now it either.

Anyway, to get restful nights I will have to borrow an old S9 Autoset machine from a friend and configure it the same as my old S9 Autoset and the Airsense 10 Autoset they loaned me 4 weeks ago. I'm forced to do this until the clinic give me the correct autoset machine as I can't cope using this new Airsense 10 Elite, it's making me feel terrible and isn't working for me so it's going back in it's bag never to see the light of day in my house ever again.

Thanks again for the advice and enabling me to clarify my thoughts. I keep posting with updates.

Hi Blazing_Black_Beard,

I've been out all day, so I've only just caught this. (Thanks for the flag, Pugsy).

I've read through what you posted, and I hoped I've got your story correct.

You are not a newcomer to sleep apnea treatment. In fact, six years ago, your GP sent you to a near or relatively-near sleep-medicine department in one of the UK's 150 Foundation Trust Hospitals. And that sleep-medicine department diagnosed you, found that you qualified for NHS treatment, and issued you with a mask and a machine.

And the machine they started you on was a ResMed S9 Autoset.

And you were OK with that.

Then 'recently', you moved both house and city or town, one far enough away from your previous address to mean a change of NHS area. So a new GP, a different Foundation Trust Hospital, and a different sleep-medicine department. Yes?

And in this Foundation Trust Hospital and in this new sleep-medicine department, the policy is: to issue new patients with an auto-adjusting machine for a two weeks, and then have you take it back. And then they read the data on the SD card and find the pressure you were at or under for 90 pc of the time.

And then they issued you with a fixed-pressure machine set to that '90 per cent pressure'.

And you are not OK with that. It doesn't suit you at all.

And you want to know what you can do. Well, the first thing to know is that it really does vary from from hospital to hospital, and from area to area. There are areas in the UK where the standard policy is to issue an auto machine, as well as those – one of which you are in now – where it isn't.

There are even FTHs where the standard issue is both an auto-adjusting machine and built-in cellular-phone link-up.

Luck of the draw, mate.

Anyway, some suggestions:

1. You can go back to your new sleep-medicine department and suggest that both your recent results and your history (as recorded at the previous clinic) – those six years worth of numbers make a pretty good case for issuing you with an auto-adjusting machine.

BTW, I'm assuming that your case notes from your previous sleep-medicine department – or a complete copy of them – has followed you to this new sleep-medicine department. If not, make a fuss and say a complete copy has to be made, and forwarded.

Do not let them settle for the one-page letter that your previous GP got six years ago, when you started treatment, to say you were now a patient, and which one-page letter should be in the notes the previous GP has forwarded to your new GP. You want the full and detailed numbers over those six years. (I'm assuming you went along for regular follow-ups, and that the staff at the previous clinic read the data on your SD card, and kept a copy on their computer.)

And if anyone objects and say it's too expensive, or it's unnecessary, say you'll pay for the copy to be made.

Your previous case notes are important because they are evidence, they support your request. compris?

2. If the policy of your new sleep-medicine department comes up, repeat that your results with the fixed-pressure machine are so markedly inferior to those with you on an Autoset that in your case using a fixed-pressure machine is tantamount to having no treatment at all.

And especially say, "Surely this is one time when your making an 'individual funding request' is justified?"

That's the NHS way of saying spending a bit more money than standard on your treatment is justified.

3. If #1 and #2 above fail, then you might think of buying your own machine. ResMed UK will sell you an Airsense 10 Autoset for £680 (and there's no VAT). And the sleep-medicine department should be happy to fill in and sign the ResMed prescription form for you.

A new machine should easily last another six years. And when you think of the cost over time, that's less per night than the price of a Mars bar.

Plus, you can continue to attend the new sleep-medicine department as a patient and get mask parts replacement, new styles of mask as they come out, and cover for DVLA approval.

You wouldn't be the first or only person in the UK whose has done this 'half-private-half-NHS' thing . The area I live in, their policy (when I first went along) was the 90-per-cent pressure thing, and I bought my own machine, rather than use their fixed-pressure one.

The telephone number of ResMed UK is: 0800 907 7071

Blazing_Black_Beard wrote: ↑

Mon Jul 15, 2019 7:49 am

Thanks for that. Another question I have, is it normal for someone who's been on an autoset machine, then switched to cpap randomly, to have these constant issues that require moving back to autoset?

Auto machines are better for almost everybody, (except those that have convinced themselves that the "pressure changes" wake them up )

rick blaine wrote:Hi Blazing_Black_Beard,

I've been out all day, so I've only just caught this. (Thanks for the flag, Pugsy).

I've read through what you posted, and I hoped I've got your story correct.

You are not a newcomer to sleep apnea treatment. In fact, six years ago, your GP sent you to a near or relatively-near sleep-medicine department in one of the UK's 150 Foundation Trust Hospitals. And that sleep-medicine department diagnosed you, found that you qualified for NHS treatment, and issued you with a mask and a machine.

Correct on all counts so far. Not a newcomer.

rick blaine wrote:And the machine they started you on was a ResMed S9 Autoset.

And you were OK with that.

I was given a Resmed S9 Autoset with humidifier for 6 years although the recent few years of history with regards to SD card downloads are non-existent due to other issues where I've neglected to keep historical records of therapy and was discharged from the previous hospital for non-attendance of an appointment that I had no knowledge of a few years ago. I was not asked for the machine back nor did I receive any subsequent advice or reviews from my GP.

As far as I was concerned, my Sleep Apnoea was being successfully treated with the S9 Autoset and as I could easily clean and maintain the machine I had no reason to believe that any further intervention was neccesary unless the machine produced a fault or I needed new headgear, water tank, mask or tubing due to wear and tear. I had a few masks that I got over the first couple of years and rotated them and have managed to keep then in reasonable condition and the unit did not fail until a few months ago.

I tried to re-register with Leicester hospital sleep clinic but was informed I would have to register in my local county seeing as I had moved out of the area in 2013.

rick blaine wrote:Then 'recently', you moved both house and city or town, one far enough away from your previous address to mean a change of NHS area. So a new GP, a different Foundation Trust Hospital, and a different sleep-medicine department. Yes?

Correct. I moved out of the Leicestershire area and in to the Northamptonshire area.

rick blaine wrote:And in this Foundation Trust Hospital and in this new sleep-medicine department, the policy is: to issue new patients with an auto-adjusting machine for a two weeks, and then have you take it back. And then they read the data on the SD card and find the pressure you were at or under for 90 pc of the time.

They issued a Resmed Airsense 10 Autoset 4 weeks ago and took it back last Friday upon review of the downloaded SD card data. I had the machine for 3 weeks and the machine was working well and controlling my Sleep Apnoea admirably, just like the last S9 Autoset.

rick blaine wrote:And then they issued you with a fixed-pressure machine set to that '90 per cent pressure'.

I think 11.6 out of 16 is less than 90% but yes, the fixed pressure machine was brought home with me from that appointment and the specialist said I could set the pressures myself if 11.6 was too little, which I did the second day after a completely failed 1st night's therapy with fixed pressure at 11.6.

rick blaine wrote:And you are not OK with that. It doesn't suit you at all.

Absolutely 100% not OK with that.

rick blaine wrote:And you want to know what you can do. Well, the first thing to know is that it really does vary from from hospital to hospital, and from area to area. There are areas in the UK where the standard policy is to issue an auto machine, as well as those – one of which you are in now – where it isn't.

There are even FTHs where the standard issue is both an auto-adjusting machine and built-in cellular-phone link-up.

Luck of the draw, mate.

As mentioned previously in this thread, I have been told if I need autoset after trying the fixed pressure machine and it not providing an adequate level of therapy or I have difficulties with constant pressure, that they can order an Autoset for me but this sounded begrudging and reluctant, which isn't really what I expected. It also sounded like she would only consider this based on wildly different pressure levels compared to my 7 to 16 averages.

rick blaine wrote:Anyway, some suggestions:

1. You can go back to your new sleep-medicine department and suggest that both your recent results and your history (as recorded at the previous clinic) – those six years worth of numbers make a pretty good case for issuing you with an auto-adjusting machine.

BTW, I'm assuming that your case notes from your previous sleep-medicine department – or a complete copy of them – has followed you to this new sleep-medicine department. If not, make a fuss and say a complete copy has to be made, and forwarded.

I was discharged a couple of years ago but my Sleep Apnoea has not changed since then, still requiring the same level of therapy from an autoset machine due to differences in pressure needed for back, side and REM sleeping.

rick blaine wrote:Do not let them settle for the one-page letter that your previous GP got six years ago, when you started treatment, to say you were now a patient, and which one-page letter should be in the notes the previous GP has forwarded to your new GP. You want the full and detailed numbers over those six years. (I'm assuming you went along for regular follow-ups, and that the staff at the previous clinic read the data on your SD card, and kept a copy on their computer.)

As far as I am aware, there are no copies of the S9 Autoset data as I only returned to the clinic in Leicester once and was told that I would not have to regularly attend as it seemed as though my Sleep Apnoea was being adequately controlled by the Autoset machine that they gave me. The first review basically set me up for no contact apart from tube, mask, headgear and water tank maintenance or replacements and the possibility of an appointment sometime in the future just to check that everything was still the same. That letter never came and it was only when my machine broke and I tried to contact Leicester sleep clinic to get it fixed that I was informed that I'd been discharged a few years previous. I received a few masks and a replacement tube in the post and then nothing for a few years until that fateful day.

rick blaine wrote:And if anyone objects and say it's too expensive, or it's unnecessary, say you'll pay for the copy to be made.

I do believe under our rights set out in legislation that any records about ourselves can be requested digitally from any company or government institution, including medical records, without charge. An information release request or some such. I did this last year before an appeal against the DWP.

rick blaine wrote:Your previous case notes are important because they are evidence, they support your request. compris?

All I have is the memory card of an S9 Autoset with possibly a year or so of recorded sleep data. That should be enough surely? I can even load it into a PC program but I'm not sure what's available, sleepyhead?

rick blaine wrote:2. If the policy of your new sleep-medicine department comes up, repeat that your results with the fixed-pressure machine are so markedly inferior to those with you on an Autoset that in your case using a fixed-pressure machine is tantamount to having no treatment at all.

I think I mentioned words to that effect in a previous post in this thread. This is something that is at the forefront of my mind

rick blaine wrote:And especially say, "Surely this is one time when your making an 'individual funding request' is justified?"

I couldn't agree more and I will certainly do that, this week!

rick blaine wrote:That's the NHS way of saying spending a bit more money than standard on your treatment is justified.

I get you. It's all in the wording

rick blaine wrote:3. If #1 and #2 above fail, then you might think of buying your own machine. ResMed UK will sell you an Airsense 10 Autoset for £680 (and there's no VAT). And the sleep-medicine department should be happy to fill in and sign the ResMed prescription form for you.

I think I will try hard with the first option. I need to avoid the expense as it would mean having to take out a loan on no income other than state benefits.

rick blaine wrote:A new machine should easily last another six years. And when you think of the cost over time, that's less per night than the price of a Mars bar.

When put like that it does sound quite trivial but at the moment I'm not even able to fully afford my rent due to some screwed up policy with housing benefits and bedroom taxes. Ridiculous but that's another story entirely. I digress, so back to getting an NHS funded Autoset...

rick blaine wrote:Plus, you can continue to attend the new sleep-medicine department as a patient and get mask parts replacement, new styles of mask as they come out, and cover for DVLA approval.

That sounds like a plan if all else fails. I get masks, tubes and replacement parts anyway and I'm still on the books so to speak. I'll be keeping in contact with the sleep clinic this time and not rely on regular post for appointments or updates. I have set diary reminders to do so on a regular basis so there's no chance of being discharged again unneccesarily.

I'm temporarily borrowing a friend's spare/travel S9 autoset with humidifier. It was cleaned and stored for a few months when he got his new machine and I have taken charge of it tonight and set it to my old settings from my previous machine. I couldn't be happier tonight as I know I will sleep well, no thanks to the NHS of course. I didn't want to spend another night in distress. F that! I'll be recording everything to SD card also.

rick blaine wrote:You wouldn't be the first or only person in the UK whose has done this 'half-private-half-NHS' thing . The area I live in, their policy (when I first went along) was the 90-per-cent pressure thing, and I bought my own machine, rather than use their fixed-pressure one.

The telephone number of ResMed UK is: 0800 907 7071

I'll keep all that in mind and also update progress this week when I get back home. Hopefully it won't be as daunting and difficult as I am lead to believe by the apparent attitude of the specialist.

I'm just a bit concerned that the specialist will make it difficult, that's all. Sleep is a precious thing, especially as I have other conditions that take a massive hit if I don't get quality sleep. Maybe I'm just reading the specialist's intentions slightly wrong or exaggerated. We will see. Thanks for all the advice.

Blazing_Black_Beard wrote: ↑

Mon Jul 15, 2019 7:49 am

Thanks for that. Another question I have, is it normal for someone who's been on an autoset machine, then switched to cpap randomly, to have these constant issues that require moving back to autoset?

It would be normal for somebody who needs a rangeof pressures to struggle with a single straight pressure. You sound like a classic example of why they make auto machines. The DMEjust wants to give you something cheaper. Any chance you have data from the previous auto machines? If so, I would domy best to use it to get the doctor to push for an auto machine. Otherwise, I would start looking to buy a used one somewhere.

My own pressure is 11-17. I spend most of the night below 13, but if i had to use a straight machine, I would probably have to run it at 15 or 16. With my current settings, as the pressure goes up, I get a little uncomfortable and roll back onto my side, which allows the pressure to go back down. I don't wake up for this. If my machine were set to a straight 13, I would roll onto my back and stay there while the machine failed to prevent events because I need 15 or 16 on my back.

Blazing_Black_Beard wrote: ↑

Mon Jul 15, 2019 7:49 am

Thanks for that. Another question I have, is it normal for someone who's been on an autoset machine, then switched to cpap randomly, to have these constant issues that require moving back to autoset?

Squeaky wheels and all that, go back to NHS and try your luck.
They may have the wrong pressure and have the median instead of the 95%. 7-16 and they chose 11.6. It was probably min 7 max 16 and 11.6 was the 95%. Go back and ask if 11.5 was the average 95% pressure during the trial. There is no reason why the elite can't be adjusted for you. Some people do get wild swings during the night, this is often positional chin tucking and can benefit with a change of pillow. To get the head back and the throat open. It also should have been an issue and shown on the autoset.

Go to apneaboard, you may be able to find resScan software. It is better than oscar for the elite and will give more, but still minimal data.