Can Apria legally give me the book used by the clinic people

Summarizing this stuff up...for me....is ...why do they care? Really. Except for
the techs or DMEs losing money for making a pressure change, if the manufacturer had a release....no...wait.....IS IT THE MANUFACTURER?????

If you buy a machine on the internet, you get ALL manuals. So ..de facto the manufacturer must not care. We probably need to be careful how we say it or they might pull all clinician's manuals from the boxes.

Caroline, thinking cap time.....IF a manufacturer puts an instruction manual
in ALL the boxes it sells.......isn't the manufacturer really saying THEY don't
mind us having it??????? Doesn't this fact make the ...what is the word...uh,
the distributors, perhaps the DMEs the people who have started this?

Whattya think? Bill? CAroline? DSM? DME_Guy????? I am not trying to start
an argument or antagonize anyone, just figure out why we don't get that instruction manual. Liability be damned. If Respironics ships the instruction
manual out in all boxes....they don't seem to mind us having it.

Rested Gal, Bonnie...Moogy...anyone???

dllfo:

as i said before, the decision of who is at fault would most likely be determined during the course of the litigation. when the lawyer sees the evidence, he may conclude that one of them is not at fault and allow that one to bow out of the lawsuit. but if the evidence shows that both are at fault, either acting independently or together, they both stay in the lawsuit. If the manufacturer folds, then the DME cannot very well withhold the booklet because the manufacturer controls the distribution. If the DME folds but not the manufacturer, the manufacturer is putting the liability totally on the DME but the manufacturer will still have to write patient warnings because the patient's possible misuse is what they call in law, "knowingly forseeable." (law has all these little catch phrases.)

The manufacturer controls the distribution channel. Unless there is some bizarre system with DMEs, I cannot believe that the ultimate liability is with the DME. The manufacturer controls the purse strings; the manufacturer controls what is called the "stream of commerce." Similarly, it's really hard to successfully sue a pharmacist for presciption abuse; both the DME and the manufacturer are order takers.

In my opinion, it's the manufacturer acting in concert with the DME. The manufacturer knows that the normal distribution channel is that the DME takes his booklet out of the box before the machine gets to the patient. If the manufacturer wanted the customer to have the information, he wouldn't go to the trouble of having two booklets. And/or if he had no objection, you can bet your behind the clinician manual would be full of warnings to patients about improper use--that is the way manufacturers avoid liability. you know the instruction books that come with lawn mowers and chain saws and even hair dryers that are full of 97 warnings that no one, including judges in their private lives, reads? those are liability waivers--whether they work or not is another story. where are the liability waivers on the dme instructions? there are none, or at least none intended for the patient.

i can see a court saying to a manufacturer, get off it. do what everyone else does. give the machine to the patient with the full instructions. and write 10 pages of warnings to cover your ass--then later when someone gets injured because of the machine, we can decide whether the 10 pages of warnings were adequate. but it's one thing to warn and another to deprive.

of course, all of this is based on the factual supposition that changing the machine pressures is not dangerous.

Caroline

dllfo--

the instructions are marked "clinician manual." is the patient a clinician? for that matter, is the DME?

caroline

Yes, they can provide you with the manual, just do what I did and have the Dr. authorize it in the prescription for the xPap and related equipment.

yes, it just depends whether you want it for yourself and that's all, or whether you want to try to effect widespread change of a practice you find horrible.

caroline

A supplier can and generally will be able to provide you with a clinicians or suppliers manual.

There is what can be a large hurdle to get over though, and that is the 'Why on Earth would you need this' hurdle.

An MD prescribes a CPAP/Bi-Level/Whatever at a specific pressure. In the vast majority of cases, this is perfect. Everyone is happy.

In a small number of cases after a few months the pressure may need to be changed, again generally to a specific level and this is determined by an MD. Supplier changes the pressure, everyone is happy.

Basically, no matter what an MD is always making the actual treatment decisions based on medical requirements.

So in effect, 99% of the world doesn't even NEED this manual.

Now you add in the fact that if you program your xPAP incorrectly not only have you totally defeated the purpose of all these people buying you this expensive equipment, you CAN cause serious harm to yourself.

With all that in mind, is it any supprise that a request for these manuals is met with resistance?

For the small fraction of people who really can benefit from these manuals and understands how to use them is usually is not a problem.

Just ask to speak to a Manager or something similar, calmly, rationally and politely explain your need. In your case just basically explain that you are going out of the country for an extended period, you've discussed with your MD just what can happen when you change pressures without knowing what can happen and that your MD has expressed a desire for you to be able to fine tune your treatment while you are away from any source of other help.

Chances are you should be able to come to a mutual agreement.

Bingo

Bingo wrote:An MD prescribes a CPAP/Bi-Level/Whatever at a specific pressure. In the vast majority of cases, this is perfect. Everyone is happy.

How sure are you about most folks being happy with this arrangement? Can you point to specific studies showing success rates corroborating that?

Bingo wrote:In a small number of cases after a few months the pressure may need to be changed, again generally to a specific level and this is determined by an MD. Supplier changes the pressure, everyone is happy.

Would this small number of cases be from the 50% who dropped xPAP therapy, or the 50% who continued, many of whom are still struggling with it?

Bingo wrote:Now you add in the fact that if you program your xPAP incorrectly not only have you totally defeated the purpose of all these people buying you this expensive equipment, you CAN cause serious harm to yourself.

Can you provide a reference to a study showing where someone sustained harm from using or abusing xPAP equipment?

I'll grant that many substances physicians write prescriptions for can cause harm if abused, but last time I searched for documentation indicating real harm resulting from misuse of xPAP equipment I came up empty handed. And, I did look. After failing two sleep studies, and performing self-diagnosis which my sleep doc then agreed with, I self-titrated as well. At the time I believed there were real dangers associated with misadjusting xPAP equipment, but I found no evidence to support that after several searches, and have since read statements from physicians indicating that there isn't any real danger.

All just my perspective, of course. I could be wrong.

Regards,
Bill

NightHawkeye wrote:

Bingo wrote:An MD prescribes a CPAP/Bi-Level/Whatever at a specific pressure. In the vast majority of cases, this is perfect. Everyone is happy.

How sure are you about most folks being happy with this arrangement? Can you point to specific studies showing success rates corroborating that?

Well no, of course not. I was just trying to offer a perspective on WHY many companies would initially be hestiant about providing the clinicians manual. I was painting a generalization with very broad strokes.
Plus, obviously, no I don't have specific studies backing up my specific statement. It was just a comment trying to help someone out is all. Really.

NightHawkeye wrote:

Bingo wrote:Now you add in the fact that if you program your xPAP incorrectly not only have you totally defeated the purpose of all these people buying you this expensive equipment, you CAN cause serious harm to yourself.

Can you provide a reference to a study showing where someone sustained harm from using or abusing xPAP equipment?

Again, I'm really not sure why you are asking for this sort of specific information, but I can answer this one.

When people read very many sleep studies - specifically in this case Titration Reports, one of the first things a lot of them tend to notice is that there tends to be a distinct inverted bell-curve seen as the clinician performing the test is setting the CPAP pressure to find an ideal area.

For example, you might see a report that looks like this: The above are just numbers pulled out of thin air, but a spread like that really is not all that uncommon. A little exaggerated maybe to prove the point, but valid nonetheless. You WILL see a curve like that when the pressures are played around with.

So does that mean it directly causes harm? No more so than the sheer act of having OSA causes harm. Directly it is unlikely to kill you. Indirectly it most likely WILL kill you. And me.

However, I really want to stress here that all I was attempting to do was present to someone an understanding of WHY they were encountering some resistance. All I wanted to do was help. Really.

Bingo

bingo--

i think most people would want the manual if they knew it existed and if they knew that there was no danger to changing their own pressure. i think most people do not want unreasonable official interference in their lives, whether it is from a doctor or dme, government, or whomever. if i want a change in prescription medicine, either my pharmacist or i get it approved by my doctor. but i don't have to waste time and money most times. plus, i can make many changes in dosages myself and tell my doctor when i see him/her about something else, i can get the drug manufacturer's instructions/information to doctors just by asking my pharmacist. it doesn't have to be any big deal as it is in cpap with changing the pressure.

if no one wants these booklets, why are there tons of them offered for sale on ebay?

caroline

Bingo wrote:However, I really want to stress here that all I was attempting to do was present to someone an understanding of WHY they were encountering some resistance. All I wanted to do was help. Really.

You're probably just about right on why folks encounter the resistance they do. No doubt what you've described is close to the mindset of many of the folks dispensing the equipment. They actually believe they're doing the right thing. sigh . . .

BTW, welcome to the forum, Bingo. Sorry for being rude and not saying so earlier.

Regards,
Bill

chdurie2 wrote: i can get the drug manufacturer's instructions/information to doctors just by asking my pharmacist. it doesn't have to be any big deal as it is in cpap with changing the pressure.

Excellent point, Caroline. Kinda puts things into perspective, doesn't it?

Regards,
Bill

Hiya Caroline!

I'm just gonna run quote here as I've gotta strap up and get to bed!

"i think most people would want the manual if they knew it existed "

I expect you are right!!

"and if they knew that there was no danger to changing their own pressure."

I think we will disagree on that, as I do think there is a danger as illustrated in my post a few spots up in this thread.

"i think most people do not want unreasonable official interference in their lives, whether it is from a doctor or dme, government, or whomever."

Oh of course. Lord knows I sure do!

However, rather than answer everything else individually, I would just say that it really is not that large of an issue to anyone. It is just that the majority of the people would have no real use for it. (Remember that we are talking about tens of thousands of users here, not just us folks who are actively searching for information) and bearing in mind that many agree with me that it CAN cause harm... and that's all it really boils down to.

Not a big issue, just trying to seperate those who might cause themselves harm from those are genuinely have a need for it, or are interested and know how to be careful with it.

Of course, this is all also just my opinion, for what it's worth.

Bingo

NightHawkeye wrote: BTW, welcome to the forum, Bingo.
Regards,
Bill

Thanks! And thank you for all the information you folks have put together here.

B

Hi Bingo and I want to thank you for the point you made....I think we all agree
different perspectives are important to our learning.

Caroline, thanks for info on instruction manuals not being copyrighted.

Bingo, you made me curious, can these machines harm us? I really don't
know. Mine can go up to 25. It was set at either 4/25 or 5/25 and it did
pump some air in me. We backed it off to 4/16...per the doctor. And with
the help of some friends, I changed it myself.

For me, it is important to have the clinician's manual as I can't drive all the
time due to meds. I should have my clinician's manual within a week. I plan
on scanning it in...like I do all important things, then download it to my
laptop and if I forget the manual while traveling...no big deal.

And since it doesn't appear to be illegal, I will share it.

Bingo, you have missed part of this....Apria even kept my smart card. They
sell it separately I think. But my insurance paid for it, I should get it.
Or to put it another way...if I buy a car and the dealer keeps the owner's
manual and my spare tire...because changing a tire can be dangerous....
I would be unhappy. Same principle here.

bingo:

i agree that a lot of people may not have any use for the manual and could care less about having it. but it's one thing if the manual is easily available to you and you don't want it, and another thing if you want it and you can't have it.

there was a long period in my life where i was very sick and on all kinds of meds. i used to ask for/get the physician instructions/information for every drug i got as part of taking charge of my own condition; sometimes i pointed out things to the md's that they were not aware of that bettered my treatment. now i take only a couple of meds and it is less important for me to see a physician's package insert. but i know my pharmacist has it and will give it to me if i want it.

of all the people who quit cpap or don't comply, for how many is it that their pressure may not be right, they may not know it, and/or it is too much hassle/expense to go to their dme to get it right? and then you go through that, and what about if it's not right three or six months down the road?

this was my experience on that score five years ago: sleep doc says it's really an open question what the right pressure is for me since my apnea is not too bad, but my snoring is on a scale of 1 to 10, a 20. really incredible. and i have a deviated septum and a heart murmor. so he says we'll start at 7. but that could change. dme tells me the same thing and to call if i think i need a change. do not, however, touch the machine, yourself, they say.

everything i do with the dme is a hassle. it takes lots of time and energy and they bring the wrong equipment or they can't get to my house, or i meet them at their place and am kept waiting a long time. so we go through a few different masks and sizes and all. and i complain that the machine doesn't feel like it's doing anything. so they give me a different machine. and i still complain that it feels like it's not doing anything. couldn't they just adjust the pressure? reluctantly, and with much ado, they increase it one cm after complaining that it will be difficult to reach my doctor. i try to reach my doctor, and yes, he is difficult to reach. the staff at the sleep center is hardly like a well-ordered machine. finally, they increase it one cm and act like that was a big deal. is it any wonder that after a month or so of this nonsense i don't ask them to increase the pressure again and i just give up on cpap? don't touch it until i am desperate for sleep five years later, give it another try, find this forum and find out that all along i could have changed the darn thing myself if i knew how?

on danger: i dunno where you come from, but i gave myself all kinds of prescribed injections for years, had a nurse come to my house once a week for intravenous infusion of a dangerous prescribed med, and had the in-home medical care service throw an anaphalactic shock kit at me and tell me that this is what i inject myself with if i think i'm going to die and they're not around. yes, while i'm having a seizure, i'm expected to get the kit, fill the syringe and shove a long, thick needle in me. that's accepted medical practice for that med. fortunately, i never had to use it. but i'm just saying that there are accepted medical precautions that may not work in an emergency that are considered adequate contingencies as far as liability is concerned.

my position is: you, medical provider, tell me openly what the risk is, and i'll tell you if i'm willing to take that risk. there's lots of ways to deal with risk. i could have refused the risk of my intravenous therapy and not taken the med. similarly, patients could decide they don't want the risk of having to change their own pressure, and they elect the status quo of no manual and the dme has to do any change of pressure. and if there is no risk, as bill says, stop playing games. i think most people want the opportunity to decide for themselves what level of risk they are willing to undertake--this idea of dme as big brother is left over from the early 1960s.

caroline