more run around from supplier-long

well, as many of you know, i have been lamenting my lack of data capability ever since i found out that such a thing existed, back in february of this year

i tried talking to my RT who basically just plopped a machine down in front of me at my first app't and said, 'good luck, call me if you need supplies'...i didn't realize that she hadn't discussed options with me because i didn't know there were options, until i found this forum...anyway, the few times i tried to talk to her about wanting a better machine, she told me that she felt i had a superior machine and to give it more time, that my coverage was used up already so, basically, too bad, so sad

i saw my sleep doc in july who told me to give it 4 more months and see how i was feeling, even though i told him i thought 4 more months was a long time to feel like hell, after 7 months of being 100% compliant already...and he told me i'm not a candidate for an Auto, so he wouldn't prescribe it for me, but to go ahead and upgrade to a better machine if i wanted to (thanks for nothing, doc)

the customer service supervisor called me 3 weeks ago and left me a message saying, "i understand you're not happy with your machine; give me a call and we can see about switching it for a machine with c-flex and lots of bells and whistles; but it'll be another $450 out-of-pocket over what has already been paid by the provincial coverage and your insurance"...i've called her back for the last 3 weeks but she hasn't been "available", so i finally heard back from her this morning...she wanted me to come in and switch machines, so i asked her first what machine she wanted to give me...she says, "well, it has c-flex..." and i waited for the rest but no more was coming, so i said, "is that it?!" yup, that was what was going to cost me another $450!!

in the meantime i had already asked for some feedback from forum members about what i should be looking for and told her i wanted a PB420E auto...she asked me if i had the RX from my doc, and of course, no, i don't...so no auto for me...then i told her i want her to call me back with the extra cost for 1) a respironics REMstar Pro 2 and 2) a respironics REMstar M series Pro... she didn't feel i should bother spending any more money, which made me laugh, since they already got paid $1200 for a machine that costs $300 on-line! i told her not to worry about that and just tell me what it would cost me if i gave back the machine and paid the difference for the machine i want

she calls me back in a couple of hours to tell me she can give me the REMstar plus with c-flex and a smart card...i said, ''doesn't that just give compliance data?"...she said, 'yes' and i said "i told you i want full data capability, so just find out those prices for me and call me back!" not to mention that any data they collect would be shared only with my sleep doc...so, no thanks...she did offer to lend me an auto for 2 weeks (by the end of the conversation it had dwindled down to one week then to 3 nights) and she would share the data with the dr. and he could advise her of any changes...what a bunch of hooey!

i told her i want a copy of the script so i can choose where to purchase from and she said "but where would you go?" i told her i can get a complete setup from cpap.com for $600 u.s. and she wanted to know where i would go for maintenance, as in pressure changes and tweaks...HA! i laughed out loud and said,"was maintenance supposed to be part of the deal?! i haven't had any help from you people or my sleep doc for the last 7 months! where's the maintenance!!!"

so, we'll see what happens next...these people really are a bunch of shysters, though, aren't they? i'll be better off trying to get a copy of the RX from my sleep doc and ordering the whole thing on-line and keeping my f&p 234 as a backup

sorry for the long post...needed to vent
sharon1965

sharon1965 wrote:i'll be better off trying to get a copy of the RX from my sleep doc and ordering the whole thing on-line and keeping my f&p 234 as a backup

Yup.

rested gal wrote:

sharon1965 wrote:i'll be better off trying to get a copy of the RX from my sleep doc and ordering the whole thing on-line and keeping my f&p 234 as a backup

Yup.

you'd think they'd put that in the light bulb

In the US we have welfare and food stamp programs for the poor, a strong defense industry as welfare for the middle class. Now if we can get national health care, we will have welfare for the doctors and medical industry. It sounds like the Canadian system does not focus on the patient's needs and I have heard the same about the UK. Good luck getting what you really need Sharon.

Snoredog wrote:

rested gal wrote:

sharon1965 wrote:i'll be better off trying to get a copy of the RX from my sleep doc and ordering the whole thing on-line and keeping my f&p 234 as a backup

Yup.

you'd think they'd put that in the light bulb

Yup.

It sounds like the Canadian system does not focus on the patient's needs and I have heard the same about the UK. Good luck getting what you really need Sharon

focus on the patient's needs? what an absurd idea! how would anyone make any money if the patient's needs were met and people were well!?!? LOL
i've said many times that what we euphemistically refer to as the "Health Care System" is, in reality, a "Sick Care System"...a patient wanting to be well just interferes with the bottom line...the theory of obsolescence is certainly put to use in our "Health" care system!

and daddysaur, thanks for the luck...i think i'll need all i can get!

sharon

rested gal wrote:

Snoredog wrote:

rested gal wrote:

sharon1965 wrote:i'll be better off trying to get a copy of the RX from my sleep doc and ordering the whole thing on-line and keeping my f&p 234 as a backup

Yup.

you'd think they'd put that in the light bulb

Yup.

Yup, yup, yup.

Hang in there.

Den

thanks, den

Sharon,

Hang in there! We're wishing the best for you!

So many parallels I find between the "let's pretend to give the patient quality treatment" stories. When I joined the board I thought I was one of the rare few having been grossly short-changed in health care.

Sharon, I feel for'ya. The constant uphill battles, when always tired and feeling internally shredded, certainly do not help one sleep better at night.

Fight'em gal... and I hope you score a victory.

thanks, j.a, thanks nodzy,

just knowing that other people have had to fight the same fight and are willing to share their ideas galvanizes me against accepting shoddy treatment; i came to this forum knowing less than nothing about this therapy and i've learned so much from the kind people here about advocating for my own health...

knowing, too, that folks are pulling for me makes me feel supported and cared for, and so many members have gone above and beyond in offering me help that it has sometimes left me speechless

thanks again for the support

sharon