Today I had an appointment at Papworth hospital respiratory sleep centre. It was my annual appointment, where they check me out, and my machine, but I thought I could raise my issues and get them addressed.
So when I arrived, my machine was taken off me, and taken to the techs for electrical testing, while I waited to see a clinician. After seeing a nurse for weight and blood-pressure (both ok), I sat down with the sleep practitioner. As I walked in, I saw a CPAP case on the chair next to her desk, and realised it was not mine.
Anyway, we did the sleep survey, and I highlighted that while I am fine when active, when I relax I am more prone to dozing off than previous. We also discussed that I had recently suffered a number of minor sinus infections and general stuffy noses, which always gets in the way of using my CPAP, which uses a nose mask.
I asked if I could try a full face mask, to counter this, and she thought that was a good idea, better, in fact, than increasing my CPAP pressure. She then pointed to the CPAP machine and told me the technicians had replaced my old machine with a newer smaller machine. She showed the machine to me, which was, in fact about half the size of my existing machine.
So we agreed that I would try the new machine, with the full faced mask, and if things didn’t improve, I’d call them again. I was pretty happy, all in all.
You know this post is going to take a turn for the worse, don’t you!
When I got home, having popped into Wood Green Animal Shelter on the way (another story), I had some lunch, then decided to lie down for an hour, and try the new machine/mask, so I would have no surprises at bedtime tonight.
When I got the machine out, I immediately saw that althought the machine *is* half the size, it now has a separate very large mains adapter, which itself is half the size of the new machine. The previous machine had it all built in. So really the change in size is largely imaginary. Never mind.
So I plugged it in, and put the mask on, and lay back. The sensation of the mask, covering both my nose and mouth was different and strange, but the original mask was strange at first too; I would get used to it. However, there was a really annoying noise.
My old machine was nearly silent, about the same level as a fan in a computer, plus a slight whisper of air coming from the vents in the mask. Lying there with the new mask, there was a small groaning sound, every time I breathed out. I knew it wasn’t me, and I ran my hand around the mask, trying to see if I could find what was vibrating. No luck.
“This is going to do my head in, listening to that all night”, I thought, so I unplugged the mask, and plugged in my old mask. There was still the noise. I sat up again, and picked up the CPAP from my bed-side table. It was the machine that was groaning. My new CPAP machine was noisier – much noisier than the old one.
I could spin this story out further, but I won’t. On my first attempt to call the clinic, I was immediately put through to the techs, who told me:
- The noise with the new machines is a known issue, that other people had mentioned, and nothing could be done about it.
- No, I couldn’t swap it back for my old machine, as it was already on a list to be “condemned”, as it was old
- Because of the known issue with the new machines, they had recently changed manufacturers, and were expecting a different type of machine in soon. However, because my machine had just been replaced, I wouldn’t be eligible for one of these, as I had a “new” machine.
Brilliant, just bloody brilliant. So they have “condemned” my old machine, which was working fine, and stuck me with a new machine that wheezes like a 90-year-old going up a hill.
I called 3 more times, and eventually got to speak to the practitioner who had seen me this morning. She said she was unaware of the problem with the noise, and did I want to swap the machine for another of the same make. I said that the technician had told me the noise wasn’t a fault but a feature, so was there any point. I then said that whatever their policy, that I was not at all happy with the new machine, which I hadn’t asked for, and that I wanted to be added to the list for replacements when their new stock comes in.
She agreed to do this, but whether it will make a difference, I don’t know. In the meantime, I am stuck.
One of the really irritating things is that I would be prepared to buy my own machine, privately. However, when I checked out this option a few years ago, it would mean going *completely* private for all healthcare concerning my apneoa. If I bought the machine of my choice (so the NHS didn’t have to provide me with one), then Papworth would consider me a private patient and refuse to treat me. I find this fairly incomprehensible.
That’s *stupid* 🙁 Is it possible to buy one and not tell them?
Whilst I am very glad of the National Health Service, occasionally some of the innate stupidity of the hidebound system makes me want to scream. I think this would qualify as one of those cases 🙁
The problem is that these devices have memory chips, and when you go in, they plug it into the computer and download statistics on how long each night it is on, and other useful data. From that, they can see how you are doing.
So what I asked them was whether a particular machine, which is (a) very small and (b) can run from a battery pack as well as the mains and (c) is manufactured by the same company as the standard model was, compatible, connection and software wise. They said it was, but if I bought it, I could not attend the clinic but would have to go private.
Also , as these devices are classed as medical equipment, I would need a letter from a doctor before I could (legally) buy it; and that would go on my medical record and give the game away.
For the last 6-7 years or more, I have been illegally importing my preferred nasal mask from the States, because the NHS no longer stocked that item; which was the one I started CPAP with and preferred. The fact that it was about a quarter of the cost of the high-tech ones the NHS had been sold on didn’t change a thing. Last year, I forgot to take it out of my CPAP bag, and the technician looked at it with fondness – “Haven’t seen one of them in years, they did the job, and lasted forever. Do you want it replaced with a gell mask?” “No thanks”.
Sorry, I will stop ranting again!
It gets even better…
As you would probably imagine, using a bedside table device every night, year on year, you soon get used to where the on/off button is. It becomes pretty much second nature, just like the snooze button on an alarm clock.
However, it seems that not everyone is so gifted, as the manufacturers of this new CPAP have seen fit to light the two buttons on this device with bright blue LED lights, which are on *all* the time, whether the device is switched on or off, and paint the ceiling with a pale blue glow.
So this bit of equipment is supposed to help you sleep, but is noisy, and illuminates the bedroom. Excellent design, eh?