The UK experience

[SleepyParrot]

This is my experience of Sleep Apnea therapy in the UK. I don't know if my experience is typical....

I saw my GP (family doctor) in March 2011 after my wife encouraged me to as she was getting seriously worried about my ability to go for long periods without breathing.

I described my symptoms to my GP in March 2011 and got an appointment to see an ENT specialist. The appointment was for October 2011 and it couldn't be brought forward, and if I missed it it would be sometime this year before I could see the ENT specialist.

I found out in May that I couldn't make the October appointment - I was going to be out of the country, and there was no way I could avoid that. I wasn't happy, but phoned the ENT's secretary to rescheudle the appointment. The ENT's secretary phoned me a few days later, she'd got a cancellation and I saw the ENT specialist on a Saturday in June (excellent!), had the sleep study that night, and got my results four days later. The sleep study was at home, i was supplied with equipment which monitored all the relevant parameters and was shown how to use it. I was pleased about that - it meant that my sleep would be more typical than if I'd been in a strange bed.

The result was I'd got OSA and needed to be referred to a consultant for a discussion about OSA and therapy, and possibly to be prescribed a CPAP machine. The earliest appointment was early November.

Early November, I turn up at the hospital and two hours later I walk out of the hospital with a CPAP machine (S9 escape with H5i humidifer) which cost me nothing. (Thank you, National Health Service!) the S9 escape is the standard system, and I don't get a choice, so no data logging for me! I was to go back 4 weeks later (Early December) for a review - basically, to check complience. If I had (or have) any issues before early December, I can speak to trained medical staff (sleep nurses and if necessary, the consultant) at short notice which is great.

The day after I got the S9 I bought an Oximeter (CMS-50F) and recorded & printed out several nights data over the next month. When I went back for the review I gave them the graphs for my medical records. They were pleased I was taking initiative, and we discussed the graphs. I was pleased to find out that my interpretation of them was pretty good Just a few events each night, and none of them for more than a few minutes. Basically, what you'd expect from someone whose therapy is working. By the middle of the night I'm in deep sleep for long periods, 48 BPM, 97%-99% O2. Plus, i was feeling much more alert in the early evening.

The only snag for the first week was that I was getting rainout as I was using a slimline hose. One phone call later, and a climateline hose was in the post. Again I didn't have to pay for it.

In December, they said that the pressure was about right (10 cmH2O) but it would be worth trying slightly lower and if I got the same result then go with that. They were going to adjust the pressure but as the sleep nurse was making notes, I reached over to the S9 and made the adjustment She said "oh, you know how to adjust the pressure, that's good." She then said don't adjust it by more than 0.5 cmH2O per week, but otherwise she was happy for me to change the pressure as I saw fit - so long as I was sensible!

So things are good. On the downside it took a long time (8 months) to get therapy. On the upside, I can phone up anytime during office hours and speak to medical specialists to discuss anything about OSA, how it affects me, and the treatment. I'm happy and they are happpy for me to take the responsibility to set the pressure to what works best - and that was after discussions about my ability to interpret the graphs (I have a scientific background), and I'm aware of some of the potential side effects of too little and too much pressure. If anything breaks or wears out, all I need to do is to phone up and the replacment equipment (mask, host etc) would be in the post, or if the S9 has issues, I can drive to the hospital and get it swapped for a new one.

As for how the treatment is going... I'm one of the very lucky few who took to CPAP therapy like a duck to water. When I was mask fitting in the hospital in November, I was warned that initally I might feel claustrophobic... but not me, I snorkel and have done some scuba diving. In fact when I'd adjusted the fullface mask and was told that the machine was going to be turned on, and I should lie in my normal sleeping position for five minutes... well, in those five minutes I fell asleep.

I still wake up every night at about 4am for 30 minutes or so, but then I've done so for 20 years. I just lie there, and I don't worry about not sleeping, instead I enjoy being comfortable, with nothing to do except enjoy being in a nice warm comfortable bed. I soon fall asleep until 7:30 or so....

The best things is that my wife gets up about 20 minutes before i do. She makes me a cup of coffee, and places it near the air inlet of the S9. So, I wake up to the smell of coffee...

Sleepy Parrot

[Pugsy]

The best things is that my wife gets up about 20 minutes before i do. She makes me a cup of coffee, and places it near the air inlet of the S9. So, I wake up to the smell of coffee...

My husband does this for me when he is home. He drives over the road big truck so we are lucky if he has 2 nights a week at home but it sure is sweet to wake up to the smell of coffee and I don't have to make it when he is home.

[RocketGirl]

The best things is that my wife gets up about 20 minutes before i do. She makes me a cup of coffee, and places it near the air inlet of the S9. So, I wake up to the smell of coffee...

That is the most wonderful thing I've heard in a long time!

Now if only I could teach the dog to make coffee...

(Glad to hear about the UK version of this process. It sounds pretty good to me!)

[jnk]

. . . Now if only I could teach the dog to make coffee...

Is that your pet name for your . . . oh, wait, I get it now.

A programmable pot next to the blower would probably be cheaper than training a critter. Or a human, for that matter.

If I had an Escape, I would likely choose to titrate up first (once I was comfortable with the therapy) for a few weeks to make sure I was feeling as refreshed as I could feel before I tried titrating down. The only reason to lower pressure for plain-vanilla OSA is comfort. And it often takes more pressure to prevent arousals than it takes to prevent desaturations, so a pulse-ox isn't enough to judge effective pressure for the most effective sleep.

In my opinion.

And I'm just a fellow patient.

[SleepyParrot]

Yes, waking up to the smell of coffee is very nice indeed!

Thanks jnk for the comment that "it often takes more pressure to prevent arousals than it takes to prevent desaturations", but given that I can't directly measure arousals, I have to base any pressure changes on the data I have available. Nowadays I feel alert all during the day, only getting drowsy when it's getting near my regular bedtime (around 10:30pm or so). My wife tells me that I don't stop breathing during the night at all, but I do very occasionally snore slightly for a few seconds.

Still, I might try increasing the pressure by 1 or 2 cmH2O over the next few weeks and seeing if there is any change to the O2 sats and also find out from my wife if I stop snoring completely....

SleepyParrot

[jnk]

I have to base any pressure changes on the data I have available.

And the most important "data" is how you feel, which can help you determine if you are getting enough pressure. More pressure than what prevents desats (which are relatively easy to prevent for most, much easier than preventing events) may make you feel better, which is the point.

Event data is nice, but many can get well within the ballpark of the ideal pressure by going by how they feel. So I was trying to be encouraging about what is possible without event info. None of our machines tell us arousal info, so in that sense, we are all in the same boat, data or no. Some of us have found that slightly higher pressure than what gets rid of events makes us feel better--which we assume is because of preventing something in our breathing or throat that causes us to arouse.

Dial-winging may be somewhat less precise without data, but it can still be very productive, in my opinion.

[SleepyParrot]

jnk, since starting CPAP therarpy I feel like I'm 20 years younger

Cheers!
Mik the (not so) SleepyParrot

[archangle]

It's a shame these morons don't realize they could get S9 Elite for only a little more money, and then they could monitor their patients via mail instead of having to have new sleep tests, office visits, etc.

Even if you are a slimebag government official who doesn't care about your patients, you would save MONEY with the better machine.

[DynoDad]

I'm also in the UK, and my experience was also pretty good. Saw my GP in September, and on the basis of the Epworth score he referred me to the Sleep Clinic in Dundee (about 40 miles away, I live in the country). Initial appointment took about 3-4 weeks, with a nurse who fitted me up for a home sleep study that night. I next saw the Consultant at the Sleep clinic a couple of weeks later who confirmed the diagnosis - AHI of 70. About a week later I was back seeing the nurse and received my first machine, a brand new S9 Autoset and Quattro FX mask. Seven weeks from seeing the GP to receiving my machine - I was very impressed with that.

I had a follow up a week later, unfortunately the FX mask didn't work for me so I was given a Quattro mask which extends up to the forehead and another appointment for a couple of weeks hence. The Quattro was a large, and didn't fit me, so I made another appointment where I received a medium. Instantly it worked, and I was seeing AHI scores of less than 2 consistently. Once I learned how to use it and subtly adjust the position of the mask when I change sleep positions it was perfect. The only problem was that I wake up every couple of hours with a very dry mouth. Nothing happened over Christmas, so last week I had my final appointment where they took back the Autoset and gave me an S9 Escape and Humidifier, which will hopefully cure the dry mouth issue. So far it's been good, but I don't like breathing warm air, I guess that's a by-product of the humidifier though so I imagine I'm stuck with it.

I was using Sleepyhead to interpret the data from the Autoset machine, and it was very helpful in learning to use the whole system properly as I could relate what position I'd been sleeping in to the AHI, leaks and so on. No data from the Escape sadly, so that piece of enjoyable geekery is gone.