CPAP modems and remote changes to your settings without your knowledge

[Hydrangea]

Spot on, SS!

But I do think a wiki could be helpful for other members. Something like "They'll tell you xyz." "But this... is actually the truth, and this... is why they want you to believe xyz." (much like what you wrote here).

I think it would be helpful for when people come up against those arguments from their sleep "doctors" and DMEs.

[Walla Walla]

You mean like this? http://www.apneaboard.com/wiki/index.php...with_a_DME

[SarcasticDave94]

You mean like this? http://www.apneaboard.com/wiki/index.php...with_a_DME

Nah, Walla Walla, that's too easy.

Sounds like a hint we've got work to do. Allow me a few days to find "normal" again, and I'll begin a sketch of some idea I'm just beginning to kick around that maybe can help. Just don't hold your breath in waiting, I don't want to cause a central.

[Hydrangea]

You mean like this? http://www.apneaboard.com/wiki/index.php...with_a_DME

Ooh, that's good. I don't know that I've read that... or maybe I have and forgot. I'll have to re-read that, as I'm currently on the hunt for a local DME (so I can try on masks).

Bit that's not quite what I was thinking. And what I was imagining is also not DME-specific. There are things sleep doctors will say, and sleep study techs... and It's good to know how and why they're wrong, and what their motivation or bias is.

[Apnea Infant]

Quote Supersleeper

Of course, I do have a choice - but if I want my insurance to pay for CPAP and regular supplies, it has to be a provider that is in-network.  There are other DMEs around the nation that this insurance company works with and are also in-network.  But I would have to travel over an hour to get to the closest in-network DME, which I'm trying to avoid not only for getting the CPAP, but also for ongoing supplies.  Don't want to make a 2+ hour round trip every time I need filters or nasal pillows.


Why not get them to send it? My 'For Her' came all the way from across the pond. Had to pay for postage and packing mind, but at least you save the time??

[MitchS]

Quote Supersleeper

Of course, I do have a choice - but if I want my insurance to pay for CPAP and regular supplies, it has to be a provider that is in-network.  There are other DMEs around the nation that this insurance company works with and are also in-network.  But I would have to travel over an hour to get to the closest in-network DME, which I'm trying to avoid not only for getting the CPAP, but also for ongoing supplies.  Don't want to make a 2+ hour round trip every time I need filters or nasal pillows.


Why not get them to send it? My 'For Her' came all the way from across the pond. Had to pay for postage and packing mind, but at least you save the time??

My thoughts, also. After picking up the machine and first couple of masks, my supplies have all been shipped to me. The only reason I visit the local DME is to have DOT compliance reports printed. Since Big Brother was watching via the modem I had during the initial compliance period, after the 30 day follow up visit with the sleep doctor I didn’t even have to go in for that.

[kiwii]

...Yep, I do have choices, but they would involve extra expense on my part for travel and time.  When one pays for insurance, one tries to use that insurance, especially since they will pay for your machine.

We are fairly rural, and I understand the desire to deal with someone that is nearby (I don't get out much, and pretty much everything is a long drive).

My pharmacist happened to mention a DME with a very good reputation. They're about an hour away. When I finally got around to visiting them, they were very helpful in mask fitting (completely different experience from first DME!), and I also found them to be ethical.

Both of my DME's will ship (or hand deliver) supplies. There hasn't even been a charge for the hand delivery, although that may have been due to circumstances.

It was a challenge (for me) to make that initial foray to DME #2, but it paid off. If I go through insurance, they will be the ones I use.

[Apnea Infant]

...Yep, I do have choices, but they would involve extra expense on my part for travel and time.  When one pays for insurance, one tries to use that insurance, especially since they will pay for your machine.

We are fairly rural, and I understand the desire to deal with someone that is nearby (I don't get out much, and pretty much everything is a long drive).

My pharmacist happened to mention a DME with a very good reputation. They're about an hour away. When I finally got around to visiting them, they were very helpful in mask fitting (completely different experience from first DME!), and I also found them to be ethical.

Both of my DME's will ship (or hand deliver) supplies. There hasn't even been a charge for the hand delivery, although that may have been due to circumstances.

It was a challenge (for me) to make that initial foray to DME #2, but it paid off. If I go through insurance, they will be the ones I use.

I live in the outskirts of London - so very urban. Public transport links are fabulous but getting anywhere also takes at least an hour. The Resmed shop in London for which an appointment has to be made for mask fitting is great and the lady was very very helpful for my P10 fitting.

Just saying, urban areas are not too close either to get to for stocks. So internet shopping is great and apart from buying food,clothes and shoes the internet is my shop of choice.

[kiwii]

Thanks for that perspective, Apnea Infant. I hadn't thought about it that way.

[JJJ]

...Yep, I do have choices, but they would involve extra expense on my part for travel and time.  When one pays for insurance, one tries to use that insurance, especially since they will pay for your machine.

We are fairly rural, and I understand the desire to deal with someone that is nearby (I don't get out much, and pretty much everything is a long drive).

My pharmacist happened to mention a DME with a very good reputation. They're about an hour away. When I finally got around to visiting them, they were very helpful in mask fitting (completely different experience from first DME!), and I also found them to be ethical.

Both of my DME's will ship (or hand deliver) supplies. There hasn't even been a charge for the hand delivery, although that may have been due to circumstances.

It was a challenge (for me) to make that initial foray to DME #2, but it paid off. If I go through insurance, they will be the ones I use.

My initial diagnosis was back in March, 2012 and my first DME was awful. I quickly found Apnea Board and learned a lot; enough to know that they were telling me lies, like "you can't change the pressure because it could hurt you." I returned the PRS1 that my doc had prescribed and bought my own slightly used one on the local Craigslist for $250, then set it up myself. My doc's office was always very helpful, delighted even to provide me with copies of my sleep report and prescription. I found another DME and they turned out to be also very helpful and ethical.

When my PRS1 developed a problem with the card reader (but otherwise still worked) I put it on the shelf as a backup and bought an S9 Autoset from Supplier #2. That machine lasted until about a month ago. A year ago I had signed up for Kaiser Pemanente, so I went to the local sleep people to see what they had, and I ended up buying the Dreamstation Auto CPAP for a co-pay of USD$298.80. By then I had, of course, read about it and the Airsense 10 Autoset, and I selected the Dreamstation instread, partly because I could get it lots cheaper than the Airsense, but also because the modem was removable. Indeed, when I went to the Kaiser sleep center to buy it the sleep specialist said they did not use it to monitor patients and I was free to take it out. And with that she pulled it out and put it in the pocket in the case. She did say that they might ask me to put it back in briefly so they could upload data, but the look on my face was enough, and she added "but you could also just mail in the card," and then she handed me a pre-addressed envelope with a little card holder inside. Of course, by then she already knew that I knew how to change my own settings and that I monitored my own data. She also mentioned that they never snoop on patients, "we have 40,000 patients with sleep apnea and only 13 people here." And when I had completed the purchase (contract says it is mine outright and they assign the warranty to me) she asked if, based on the data that I had provided to her, I agreed that pressures of 12-20cm. would be about right. I agreed, and she set the machine to that range, and then asked a few more questions about my preferences, which she entered in the setup. And then as I was leaving she said "the machine is yours now and how I set it up is in your chart, and what you do with it after you leave is your business."

Now, you must bear in mind that the vast majority of XPAP users have never been here or anyplace else where they could learn about how to change settings on their machines or why they might want to. And in today's developed world (Europe, North America and Down Under) the health care field has successfully indoctrinated the populace to do as the provider dictates without question. For these patients the only one with the knowledge to change settings correctly is the patient's doctor or the doctor's minions. And being able to get the patient's data and to effect changes on the patient's machine remotely is a huge time-saver (think 'holding down health care costs).

But I now return to the original point of this thread - changing settings without telling the patient. If my doctor said "here's a prescription for some pills. Take them as the label says," and then just walked out of the room, I would consider that tantamount to malpractice. (And yes, there are exceptions to just about everything in this world, including that.) And I'm happy to report that no doctor of mine has ever failed to tell me what the supposed benefits are, possible side effects, and other important details. I haven't done any legal research to find out whether a court might rule such behavior to be malpractice, but I must assume that Resmed and Philips surely ran it past their legal departments - a phrase that comes to mind here is 'enabling and encouraging malpractice.' And even if legal, changing settings without telling the patient what settings are being changed and why may well be a violation of the ethical standards of the provider's medical society. And even if they can get away with it legally and ethically, they're going to lose me as a patient.

PS: If you have a Dreamstation the recent firmware update (1.14.1) has added an option for the provider to require a PIN to get into the clinician menu. How to get past it has been reported on AB. I looked at the setting on mine and noted that Kaiser did not set a PIN, so I set my own PIN to lock them out. LOL.