Disappointed!!! UK

Hi I,m new here and posted recently with sleep apnea. Told by hospital that I,m on waiting list for machine - 3 months approximately. This I was told end of October, called hospital today to ask if I would be informed of machine by letter or phone, they now informed me that there is now a 5 month waiting list!!!! I could cry I have two children who are fed up watching mum fall asleep all the time.... Most days I'm dragging my self to work hoping to get through the day without sleeping at desk... I did ask to be put on the list for cancellations. Is there anything else I can do?

gwen10 wrote:Hi I,m new here and posted recently with sleep apnea. Told by hospital that I,m on waiting list for machine - 3 months approximately. This I was told end of October, called hospital today to ask if I would be informed of machine by letter or phone, they now informed me that there is now a 5 month waiting list!!!! I could cry I have two children who are fed up watching mum fall asleep all the time.... Most days I'm dragging my self to work hoping to get through the day without sleeping at desk... I did ask to be put on the list for cancellations. Is there anything else I can do?

buy your own machine from secondwindcpap.com, or the UK equivalent of craigslist.

wait... I thought this stuff is free in UK

There may not be a UK equiv. of Craigslist... seem to remember someone else saying that a while ago. In any case, I hope you're not sleeping on your back because it causes more apnea. Have you talked to your doctor about the list thing? Does he/she have any influence or creative ideas? Is there some community organziation at all that might know where you could find a 2nd hand machine inexpensively until you get your 'real' one? We could certainly help you get it set up if necessary. Can you look in the papers for people selling them (either Cpap or A(uto)pap machines? And you'll need a good mask that's fitted to you, in your size, preferably lying down while trying it.

tan wrote:wait... I thought this stuff is free in UK

No, it's FreeStuff, not stuff that is free. There's a somewhat subtle difference -- or maybe not so subtle if you die waiting for your FreeStuff to appear.

Be sure to complain to your elected officials. Point out that this is a life-threatening issue.

They probably won't listen, but if no one complains, there's zero chance anything will get done.

Some folks can get some rest by sleeping sitting up, but not on ones back. Like when we had bench seats in cars, folks get sit somewhat sideways, lay their head on the back of the bench seat, and get some rest far above sleeping in a bed. For some, it does not work at all. This sleeping while sitting up is what sleep apnea folks do when the power is out.

You might add to this, and I never heard of anyone try this, but you might also get a soft cervical collar, so your chin is fixed in the up position while you sleep. Some here say they have far fewer apnea problems when they sleep with their chin up, rather than having the chin closer to their chest.

Trying to decipher what you meant when you said cancellations. Have you had an overnight Sleep Apnea study to prove you have Sleep Apnea? Have you had a second study (maybe the same night as the first) a Titration Study to determine what the settings on the machine should be? That is, If you had a machine already, would you know what settings the machine should have.

Even if someone here in the US had a used machine, I am not sure they could ship it there.

Let us know how it goes.

purple wrote: Even if someone here in the US had a used machine, I am not sure they could ship it there.

What would prevent shipping a used machine to the UK? Are there known restrictions about doing that?

sleep_quest wrote:What would prevent shipping a used machine to the UK? Are there known restrictions about doing that?

You said that the way I should have posted my point. Can it be shipped to the UK?

I for one, do not have an extra machine. I gave to my sleep docs office my APAP over a year ago. But if the person does not have a firm diagnosis and titration, not sure how much a machine would help. Putting a machine into auto mode, and trying to let it determine what pressure, while a first timer is also fighting with leaks, and other mask issues is surely frustrating, but some have done exactly that, and succeeded in treating their own sleep apnea.

UK medicine - free but slow. When I lived there (born there, moved to US in 91) I had good but expensive supplemental "private" health coverage.It was called BUPA and saved me many health damaging delays.

Contact your local TV station or newspaper. Tell them the whole story. Roll it on thick.
Waterworks would be a nice touch. All you need is to call attention to whoever is dragging their feet.
Embarrassment makes good grease.

You could try phoning Intus, who sell machines. I think they might advise you what is your cheapest option - obviously not buying from them, but they're very helpful.
http://www.eu-pap.co.uk/products/cpap-machines.html

I've just come back to the UK from Germany, need a new machine but do have one that still works - the new NHS machine will take 16 weeks to come. It seems to vary from place to place.
The UK forum at forums.cpap.co.uk told me to buy my own. Of course, it isn't expensive per night when you think how long you use it.