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I get my CPAP on April the 14th and I am literally counting down the says....I'm looking at my first decent night's sleep in 25 years.

How do they measure the right amount of pressure to use? And will I feel the benefit the very next morning after using it?

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Russ, how are you holding up? Only a couple more weeks . . .
Hi, I am new to this forum. A friend introduced me to it. How long after you have a titration study do you get your machine. I am reading above that you have to wait 58 days to get your machine..did you go back to the doctor after the titration study, does the doctors office contact you, what actually happens? I am also looking forward to not waking up with headaches every morning, which I have in the past 15 years..I have suffered so long without a good nights sleep. The first study diagnosed I stoped breathing so many times. Any help out there would be great!
Margo, you don't have to wait 58 days. Russ is in the U.K., and they have waiting periods there that aren't like ours -- I see you're in Hawaii (i'm jealous, of course). But here in the U.S., you should be able to order a machine ASAP after getting the titration study done. My experience was that i had a brief doctor's appointment after the study during which he gave me a list of local DME companies, or Durable Medical Equipment companies - the places you actually purchase the machine - it was then up to me to choose a DME off the list, make contact, check whether it took my insurance, then fax them the prescription and copies of the sleep studies (both diagnostic and titration). Does that make sense?

Margo Lozoya said:
Hi, I am new to this forum. A friend introduced me to it. How long after you have a titration study do you get your machine. I am reading above that you have to wait 58 days to get your machine..did you go back to the doctor after the titration study, does the doctors office contact you, what actually happens? I am also looking forward to not waking up with headaches every morning, which I have in the past 15 years..I have suffered so long without a good nights sleep. The first study diagnosed I stoped breathing so many times. Any help out there would be great!
Hi all, sorry for the lack of updates. It didn't go quite as well as planned. As you'd expect from the NHS there was a grade-A ****-up,

Back in October the specialist told me they'd be in touch to arrange an appointment for me to get a mask, then a follow-up visit a few weeks later to give them an update on whether it's working. I had a letter in the post a few weeks later asking me to attend on april 14th.

That was the date I was counting down to.

When the day came I went to the hospital full of expectation. As I went in to the specialist's room, his first words were "so how are you finding the mask?".

He wasn't British - he was Egyptian and his english wasn't very good so he a bad time explaining it to me (another reason why the NHS should only employ naturalised English-speaking doctors but that's a different story) but what had happened was the appointment I'd had through the post was the follow-up and not the appointment to have the mask.

I played hell with him, asking why would they make a follow-up appointment when there was nothing to follow up from! He just did the usual "non british doctor" thing and held up his hands and said "I know naaaaatheeng".

I was absolutely livid.

Fortunately someone from cardiology was passing by and he offered to look in to it for me.

He was the first (and only) person who explain the whole procedure. First of all I'd need to try out a titrate machine so they needed to make an appointment for me to take one home for 10 days' trial. Having seen the shambles I'd already been through he pulled some strings and I'm getting it on May 19 but it has to go back just over a week later. I'm on the waiting list for my own mask, he couldn't tell me where on the list I was but explained I was in the top 20. Due to the recent start of the new tax year they'd received funding for 50 new masks so I'd be getting one of the next batch. Ordering and testing them takes around 6 weeks and about another 4 weeks is spent contacting the 50 people and arrange the 'fitting' appointments.

So whereas I'm looking at a 3 week wait for a temporary machine, my own will take 2 months.

The moral of the story? Should you ever need the NHS, make sure the doctor speaks English properly.
Russ, your story is painful to read. sort of a case study in a bureaucratic medical system gone awry. wonder if this is any indication of how things usually go in the U.K., or are you just having unusually bad luck?

Russ Burt said:
Hi all, sorry for the lack of updates. It didn't go quite as well as planned. As you'd expect from the NHS there was a grade-A ****-up,

Back in October the specialist told me they'd be in touch to arrange an appointment for me to get a mask, then a follow-up visit a few weeks later to give them an update on whether it's working. I had a letter in the post a few weeks later asking me to attend on april 14th.

That was the date I was counting down to.

When the day came I went to the hospital full of expectation. As I went in to the specialist's room, his first words were "so how are you finding the mask?".

He wasn't British - he was Egyptian and his english wasn't very good so he a bad time explaining it to me (another reason why the NHS should only employ naturalised English-speaking doctors but that's a different story) but what had happened was the appointment I'd had through the post was the follow-up and not the appointment to have the mask.

I played hell with him, asking why would they make a follow-up appointment when there was nothing to follow up from! He just did the usual "non british doctor" thing and held up his hands and said "I know naaaaatheeng".

I was absolutely livid.

Fortunately someone from cardiology was passing by and he offered to look in to it for me.

He was the first (and only) person who explain the whole procedure. First of all I'd need to try out a titrate machine so they needed to make an appointment for me to take one home for 10 days' trial. Having seen the shambles I'd already been through he pulled some strings and I'm getting it on May 19 but it has to go back just over a week later. I'm on the waiting list for my own mask, he couldn't tell me where on the list I was but explained I was in the top 20. Due to the recent start of the new tax year they'd received funding for 50 new masks so I'd be getting one of the next batch. Ordering and testing them takes around 6 weeks and about another 4 weeks is spent contacting the 50 people and arrange the 'fitting' appointments.

So whereas I'm looking at a 3 week wait for a temporary machine, my own will take 2 months.

The moral of the story? Should you ever need the NHS, make sure the doctor speaks English properly.
It's not really indicative of how things are in the UK but what you need to take in to account is the major differences between the UK and US healthcare systems - we don't pay for ours. Well we do but it comes from our taxes. If I needed an operation for something then I know I will have it and I won't have to pay for it or have insurance (unless I wanted to go private but that's a different story). That's the 'plus' side. The negative is the wait. Because healthcare is free, more people have it - and this causes waiting lists.

Waiting lists are part and parcel of the NHS system, this has long been accepted, so much so that very few people moan or even comment about it.

Because the NHS pays for treatment, it has to be frugal with money. Employing doctors from abroad is often a cheaper option. Obviously these people are fully qualified, this has never been in doubt. But their grasp of english....I'm assuming that requirement is not as stringent as medical qualifications.

Many health trusts are merging together to save money - it would seem my local health trust is getting together with another local one and this might be the reason for the hassle I've had. I've spoken to my local Complaints Advocate and he's happy to take on my case but he's suggesting I hold off until I get my mask, just in case I find myself suddenly no longer in that top 20....
Yes, we hear similar stories from Canada about the Canadian medical system. Its seems in Canada tho, that WHERE you are has a great influence in the timeliness of your health care. And their CPAP therapy benefits are no where near so generous as the UK's.

Americans should be careful of what they pray for. Sometimes its better to be thankful for unanswered prayers. National healthcare scares the h*ll outta me. Fee for service worked well in this country until insurances got involved, especially HMOs. The HMOs really know how to suck the money out of the system and into their corporate pockets or at least for their CEOs and upper echelon employees.

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