UPDATE: THE FUTURE OF SLEEP THERAPY

guest - also posted as polysomno-man wrote:...You can talk about how great this site is all day, but the point is not everyone comes here for help, or has the ability to figure out how to adjust their pressures properly. It chalks up to, one bad apple spoils the bunch. Just to be clear, I am not justifying their actions, I am just telling you what I have been told. Trust me, if I could change rules regarding OSA or any other sleep disorder, I would try to make things as easy and painless as possible. Unfortunately the government and insurance companies have the ultimate say now.

Not everyone is capable of figuring out how to dose insulin for diabetes, but a six-year-old can be taught. And many of the people on this list are patient advocates for others who cannot do for themselves. Your argument is specious, at best. You obviously don't have any SDB. How curious... Why are you really here?

The difference is that pharmacists have education and training equivalent to that of medical doctors. DMEs not so much.

no_more_headaches wrote:I am trying to understand the difference between pharmacies and DMEs.

Guest/(polysomno-man) wrote:first off, chill out carbonman. what does it matter what name I use anyways? It shows what my main identity is regardless of the name I use. Everyone can see that, I am not trying to fool anyone into thinking I am multiple people.

It goes to your credibility. You claim to be a sleep/medical professional but your behavior here has been less than professional. You claim to be telling us some sort of inside secrets, but you choose names that cry 'everybody hates me'. It raises the question whether this inside information you supposedly have is real or perhaps just more of your flair for drama.

Guest wrote:Seriously people, just because most of us are of sound mine doesn't mean that there couldn't be people out there that would mess themselves up or prevent their treatment from working properly if they had the ability to change their pressures.

Uh-huh, and a diabetic friend accidentally picked up the pen with the fast-acting insulin, and took the amount of that which she should have taken of long-acting.

It could have killed her, if she had not realized immediately what she had done, and took appropriate steps (drinking orange juice and apple juice, followed by protein) along with testing at frequent intervals to be sure her blood glucose was again stable.

Did her doctor and pharmacist announce that because she made a mistake, all diabetics should be denied the right to inject their own insulin, and be denied the right to do their own readings?

No. My friend does a morning pre-prandial BG test. She eats breakfast. She does a two-hour post-prandial test. Some hours later, she had her lunch/dinner -- she does a pre-prandial and two-hour post-prandial test. She also does a bed-time test. This testing would be utterly impossible if she had to run to a lab to have her finger stuck for every one -- but she has her results to monitor and modify her therapy, and her doctor downloads her meter himself at each visit.

In what way is my friend's monitoring of her blood glucose different from apnea patients and software to monitor their therapy?

Guest wrote:You can talk about how great this site is all day, but the point is not everyone comes here for help, or has the ability to figure out how to adjust their pressures properly. It chalks up to, one bad apple spoils the bunch. Just to be clear, I am not justifying their actions, I am just telling you what I have been told. Trust me, if I could change rules regarding OSA or any other sleep disorder, I would try to make things as easy and painless as possible. Unfortunately the government and insurance companies have the ultimate say now.

My diabetic friend was educated by her doctor (and, in fact, he considers her knowledgeable enough that he now solicits her opinion on how new members of his staff handle patient interviews) -- in the same way apnea patients could be educated, and given the tools.

If sleep professionals, in particular, the DMEs who are so bent on protecting their profits that they issue bare-bones machines without the ability for people to monitor their therapy, would spend all the effort they put into keeping apnea patients ignorant into proper education, this site would be unnecessary.

The manufacturers, because they consider the DMEs their customers, not the end-users, comply with what the DMEs want.

Education should not be the DME's role - it isn't in any other aspect such as diabetes.
With diabetes you get called in to the hospital clinic for training and education - this person has no vested interest in selling you more needles, testing equipment or insulin. If you need more help you call the special clinic or your nutritionist, you don't talk to the salesman for your monitor.

OSA should be treated the same way. Buy the equipment where you want, get training and support by a specialist who doesn't sell the stuff but has your best interest at heart. Someone who teaches you not only how to clean the machine but proper sleep hygiene, relaxation/self hypnosis techniques and who is capable of answering questions and knows enough anatomy to realize the tear ducts connect to the nose. They should be providing simple check lists for the first time user.
Plus your insurance should be enforcing you to go to apnea support groups as part of compliance.

Everyone, I've been re-reading some of polysomno-man's posts. Although it may come across at times that he is defending DME's, I'm not really sure this is his motive. He is a sleep tech. The most useful, helpful slice of people in this business tends to be the sleep techs. They don't get paid the big bucks, and they do more real work than the doctors do. They don't get a kickback or commission. They probably know more than the doctors do about the machines and the software. Instead of being angry at his message, maybe we should be listening to the messenger. We cannot condemn him for telling us what we already know, but I suspect he may have more information that will be useful if we cut him some slack.

For my part, if he's not here to try to change the way we help each other, I would like to apologize for questioning his motives. He may feel it could harm his job security to come right out and more than acknowledge that the system is messed up. He's not likely to tell us what we should do with regards to machine setting changes because as a professional in the field, it may come across as 'diagnosis' - which would be illegal, since he's not a doctor. He's got a very thin line as to what he can actually say, but when it comes to general policy, I think he's allowed to tell us what he actually thinks about it.

This is his original quote:

datguyyouallhate - also posted as polysomno-man wrote:I doubt you will see the software available to the public. They don't want the public changing their pressures and self medicating. This is why ResMed doesn't sell their CPAP's to alot of websites either. They want the DME's to have a role in people's health. They want the DME's to start doing their jobs better, and to have people stop guessing at what they should do and have a reliable source for information. I've talked to both companies reps, and they hate the idea of people trying to "self medicate" their pressures. Not my words, its theirs. So if you want to go on a rant, make sure you don't aim it at me. I am just telling you what I was told.

He's not telling us he likes it. I'm not sure he exactly agrees with it. He is telling us that Phillips Respironics is trying to inculcate a different culture into the DME system in an effort to change their education. He has consistently attempted to tell us what's going on inside the corporate culture system - asking us not to be judgemental about presenting what PR and others would like to do.

Yes it's a thorny issue, again - maybe we should rant less against the messenger and acknowledge that the message has been received and understood: PR wants to keep us in the dark for two reasons: a. The US is a litigious society, and b. Given that, the most effective profit mechanism is to keep us in the dark and foist litigation damage control onto the demesne the DME's. It's a profit driven motive for a litigious society.

I have to agree with him about this: It is unlikely that an unhampered version of Encore Viewer 2 will be released with all the data we would like to see - if they release one at all. Our best bet will be to take this to a 'higher court' so-to-speak, and convince the powers that be that we are better off with a system similar to that of tools used for diabetes. The question becomes, where do we take it? Who do we talk to, and how do we get represented? We want full access to the data using the unadulterated software. We want full disclosure and education to the level of each user's or patient advocate's capability. polysomno-man, I'd like to hear your thoughts on that.

Everyone - what steps should we take to make this happen? Together we have a voice. Why not use it?

DreamDiver wrote:Everyone, I've been re-reading some of polysomno-man's posts.

You mean posts like these?
viewtopic.php?p=337854#p337854

polysomno-man wrote:how about you fill your humidifier with bleach and ammonia?

O.

DreamDiver,

Not trying to defend the actions of your DME in any regard or to trivialize your poor experience, but I would like to correct one statement that you made.

“The default setting for 7-day and 30-day AHI's on the M-Series Pro is 'patient accessible' on the LCD readout.”

This statement is incorrect; the default setting is in fact “OFF” for the display of the AHI data on the LCD. I am aware that the “Quick setup guide” gives the impression that the default is “ON”; however that is not the case. I setup around10-12 M series Pro’s a week and never had one default to “ON”. Our company policy dictates that it remains in the “OFF” setting, I don’t agree with that, and that’s all I’m going to say about that. :\


I couldn’t agree more with this statement though.

“We want full disclosure and education to the level of each user's or patient advocate's capability.”

However I believe a few things have to happen, not necessarily in the order listed, before that will become a reality like it is with Diabetes patients.

1. The general public has to come to a conscious awakening as to the sever affect that OSA can have on a persons health, to include death.
2. Better patient education regarding SA done by Physicians and other Health Care professionals during the Diagnostic AND Treatment phase.
3. Increased patient involvement, I currently have a total of 2 patients (that I am aware of) who are interested in their data.
4. Increasing awareness to Physicians that there is a significant population (which I’m convinced there currently is not) of patients that want to take control of there treatment and work with the Physician to find the best results. This needs to happen enmass though, not just 1 or 2 here and there.

On the fourth point, I’m not currently convinced there is a significant population of patients who are interested in taking control of and monitoring their own PAP therapy. You could argue that this board is a good example, but let’s look at the numbers. There are approximately 15-18 million (depending on where you look) people with SA in the U.S. Approximately 8 million of those are diagnosed and recommended to START PAP therapy. There are 43,811 registered users on CPAPTalk, which is only .5% of those diagnosed. This is a generous figure at that since not all of those registered are PAP users and not all are from the U.S. I wouldn’t consider this a significant population, don’t get me wrong I’m not arguing against patients monitoring and self adjusting, just that there doesn’t appear to be a significant population doing it or interested in it.

As far as PR software goes, I think it will become available sooner than people think.

The concept of DME's playing a more active role in the care of patients seems impractical. To get ongoing monitoring from a doc, one has to set up an appointment. These certainly aren't available on a weekly basis and cost anywhere from $25-50 for a co-pay. Leaving messages and expecting a call back will not have you talking to a doc. Most likely their nurse or tech. Are DME's going to hire a multitude of employees that will make frequent contact with patients? I don't think they would unless there's some sort of billing involved. Will an insurance company pay for weekly/biweekly consultations with the DME's rep? I don't know the answer to that. Nobody's going to do it unless there are some dollars involved.

akcpapguy seems to believe that the number of patients interested in active participation in their care is low. If that is the case, and it seems to be, I think there are ways that the manufacturers can develop products to engage patients. Currently, they seem to be going the other direction.

akcpapguy wrote:On the fourth point, I’m not currently convinced there is a significant population of patients who are interested in taking control of and monitoring their own PAP therapy. You could argue that this board is a good example, but let’s look at the numbers. There are approximately 15-18 million (depending on where you look) people with SA in the U.S. Approximately 8 million of those are diagnosed and recommended to START PAP therapy. There are 43,811 registered users on CPAPTalk, which is only .5% of those diagnosed. This is a generous figure at that since not all of those registered are PAP users and not all are from the U.S. I wouldn’t consider this a significant population, don’t get me wrong I’m not arguing against patients monitoring and self adjusting, just that there doesn’t appear to be a significant population doing it or interested in it.

My counter question is -- how many people have been educated to know such monitoring is possible? How many of those millions (like my brother-in-law, my niece, and her husband) had bare-bones machines foisted on them, so that even if they wanted to, they could not read their data? How many people with OSA don't know that it is possible or desirable to read their data?

I couldn't afford to drive 40 miles each way each week to have my card read. MY time is valuable, too. Not to mention paying a co-pay for every visit.

I don't see why I should trust the incompetents who shipped my last set of nasal pillows in a plain envelope so that they arrived twisted and unusable with my data. Nor frankly, do I want to trust the U.S. post office with my data -- too expensive to ensure each parcel each week AND make a trip to the post office every week.

akcpapguy wrote:As far as PR software goes, I think it will become available sooner than people think.

I was told, about eight months ago, by a Respironics representative, that "Encore Pro Home Edition" would be available "soon," yet Respironics apparently continues to deny that a patient-useable interface is under development. Do you know anything about this?

In akcpapguys signature it says he has "Encore 2.1 " in his possession. Is that the doctor version of the program we are wanting?

Since the vast majority of xPAP patients are poorly educated on this therapy, it's highly likely that they don't even know that software exists or that it's possible to access your own data. So I think it's a difficult argument to make that most patients aren't interested. Most patients don't know it's even possible.

All I knew following my PSG is that I wanted a CPAP, it was that powerful a visceral experience of the best few hrs of sleep I'd had in nearly a decade. This required sleeping with a mask on my face (not too bad in PSG) connected to a hose that attached to the CPAP. I had no clue as the various machines, that there was data available that could help me manage and more importantly optimize my therapy; I did know that there were other perfectly terrifying masks but I chose the OptiLife I wore in the PSG as it is so minimal. All I did from Aug '07 to Feb '09 when I started lurking here was mask up, hit on to initiate ramp whose duration I could control, and sleep..blissful, restful sleep with only a few hitches in the beginning. Then, no more restful sleep. Took me months to find answers; in fact, it wasn't until I found this forum May '09 then joined in June that I figured it out based on other told me, namely, that i was losing therapy air thru my lips. I was shocked at how SDB ignorant I was; then, too, I remember how muddle-headed I was and know that even if someone had tried to treach me it wouldn't have made much sense...I'd have just felt too overwhelmed to make sense of any of it. This issue presents a dilemma for me. I was very aware following diagnosis that apnea could kill me, that it still might. Education in the beginning might have been beyond my grasp until I started getting some restful sleep, but certainly in my case that could have started after 45 days following acquistion of my CPAP. Being an avid reader, handouts-booklets-books-magazines-point me here all would have worked..but my therapy was succeeding, I was recovering so what more would education have accomplished at that time? That I desperately needed knowledge when I started mouth leaking goes without saying but I wasn't curious as I thought that eventually I'd recover sufficiently that OSA would be history. 'Tis a puzzle to make recommendations beyond compliance-only CPAPs should be outlawed and patients should be instructed with corresponding handouts on reading the overnight data on their machones...even as muddle-headed as I was would have been able to understand what Leak, AI, HI, pressure, usage meant.

Kiralynx - what was it like when you were alive? Yeeesh.

Guest wrote:Kiralynx - what was it like when you were alive? Yeeesh.

Ad hominem attacks are generally unacceptable in Forums. Oh, sorry. You probably don't know what "ad hominem" means.