WE THE USER

I have called Respironics and sent a message and also sent an E-MAIL to d.spence@respironics.com. The E-MAIL address I just guessed at but I have not gotten a rejection notice back. If anyone has the executive E-MAIL addresses for any of these companies post them and start sending messages letting them know we are actually their customers. As to the Respironics software since they only needed a version change that tells me that an output format or additional data changed rendering previous versions not compatible with the PR so updated versions of the other software is what will be requiredto match the data captured by the PR . It would not have made ant sense to start at square one. Changing the others should not be a major undertaking they just need some motivation by WE THE USER.

If your choice is a Respironics then let them know how you feel. Likewise if your choice is a Resmed or any other machine you have chosen for the teatment of YOUR OSA do the same. I belive WE THE USER can AFFECT a change with these companies as well as the DME companies. If a DME cannot move a machine they have in stock they will change likewise if a company notices sales are down they will change because their bottom line is money. LET THEM KNOW HOW YOU FEEL I AM A FIRM BELIEVER THE SQUEAKY WHEEL GETS THE GREASE. Let these DOCTORS and DME companies know how you feel THIS IS YOUR CONDITION. I think most situations once the titrations are done and the machine is set unless you have a good DME OR dOC no one ever checks again unless you are having a problem. How many times has this led to a new sleep study to the tune of hundres if not thousands of $$$$$$. There have been studies that an auto cpap has demonstrated not much difference between it and a manual titration. I think this has created some cash cow situations where we are the COW.

I have not heard from Respironics but I am not going away!

YOUR THOUGHTS
cotech50
cotech50

Last year, this time, I posted the following:

viewtopic.php?f=1&t=37053&p=322449&hilit=+Dakin#p322449

I concur!

I have given this issue some thought, and I could be wrong, but I am about to take a position on this that may be very unpopular.

First, I applaud your spirit and your willingness to be the squeaky wheel. But activist users like us are the minority and need to direct our efforts where they count in our activism.

The reality is that most OSA patients in the Untited States fall into one of two categories: (1) the patients who get handed a machine and could not care less about data because the machine works great for them without it and (2) the patients who try the machine for a few months then put it in the closet without ever touching it again. We need to realize that we are members of a relatively rare third category, the people who need and want to see data to optimize our therapy.

Do we matter? Yes. Can we have much effect on what type of machines will be handed by DMEs to uneducated first-time patients? Not by writing the manufacturers, in my opinion. That is because no patient is educated when he first walks through the doors of the DME, so he is a sitting duck and will take whatever machine is handed him.

And whose fault is that situation, really? In my opinion, it is the doctors' and insurers' fault and ALL responsibility rests squarely on THEIR uneducated shoulders at that point in the patient's treatment, since the patient hasn't had time to find US before going to the DME.

Think about it: If the doctor (whose job it is to prescribe for the patient what he needs) does not write an Rx for an efficacy-data machine that has user software available (whether out of ignorance or fear of the insurance cartel), then the loud-and-clear message to the DMEs and manufacturers is that it obviously doesn't matter. Because if it did (in their view), the docs would be writing prescriptions for efficacy-data machines with patient software, every time.

So until the docs and insurers get educated enough to demand from the DMEs and manufacturers what their patients/customers need, nothing will change.

So go yell at your doc and your insurance if your doc won't write an Rx for what you need to make your therapy successful. Educate THEM. THEN you might be getting somewhere. Until that happens, writing E-mails to a business that sells its products according to what its market demands won't accomplish much. If you aren't touching their profits by affecting what the doctors/insurance/DME racket is asking for, the manufacturers have NO reason to do anything more than grin at the E-mails they get. They will keep laughing all the way to the bank.

In the meantime, educating patients in the forums like this one at least helps those who find this information before they are locked into a sub-standard machine from a local DME.

Hey, you asked for thoughts. And those were mine.

jeff

cotech50 wrote:I have called Respironics and sent a message and also sent an E-MAIL to d.spence@respironics.com. The E-MAIL address I just guessed at but I have not gotten a rejection notice back. If anyone has the executive E-MAIL addresses for any of these companies post them and start sending messages letting them know we are actually their customers. As to the Respironics software since they only needed a version change that tells me that an output format or additional data changed rendering previous versions not compatible with the PR so updated versions of the other software is what will be requiredto match the data captured by the PR . It would not have made ant sense to start at square one. Changing the others should not be a major undertaking they just need some motivation by WE THE USER.

If your choice is a Respironics then let them know how you feel. Likewise if your choice is a Resmed or any other machine you have chosen for the teatment of YOUR OSA do the same. I belive WE THE USER can AFFECT a change with these companies as well as the DME companies. If a DME cannot move a machine they have in stock they will change likewise if a company notices sales are down they will change because their bottom line is money. LET THEM KNOW HOW YOU FEEL I AM A FIRM BELIEVER THE SQUEAKY WHEEL GETS THE GREASE. Let these DOCTORS and DME companies know how you feel THIS IS YOUR CONDITION. I think most situations once the titrations are done and the machine is set unless you have a good DME OR dOC no one ever checks again unless you are having a problem. How many times has this led to a new sleep study to the tune of hundres if not thousands of $$$$$$. There have been studies that an auto cpap has demonstrated not much difference between it and a manual titration. I think this has created some cash cow situations where we are the COW.

I have not heard from Respironics but I am not going away!



YOUR THOUGHTS
cotech50
cotech50

http://global.respironics.com/info/contactus.aspx

I used the above link and stated in the comments section: "I currently use the REMstar Auto with A-flex. I use the encore viewer software. If you do not make the software available for your new PR system, my next machine will be from a company that provides patient software.

This is one of my favorite quotes: Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has. - Margaret Mead

kiralynx

Thanks for the post. I will fire up my Microsoft Word and dust off my printer and do as the linked post advised WRITE A LETTER.

jnk wrote: So go yell at your doc and your insurance if your doc won't write an Rx for what you need to make your therapy successful. Educate THEM. THEN you might be getting somewhere. Until that happens, writing E-mails to a business that sells its products according to what its market demands won't accomplish much. If you aren't touching their profits by affecting what the doctors/insurance/DME racket is asking for, the manufacturers have NO reason to do anything more than grin at the E-mails they get. They will keep laughing all the way to the bank.
jeff

Based upon my own experience with going the other route and attempting to make a difference with a manufacturer (ResMed...which is still laughing on their way to the bank with monthly replacement pillows for the small minority of us who have worked to manage our therapy effectively)...I fully agree with your opinion, Jeff!

(Worn, but still getting activity!! viewtopic.php?f=1&t=41729&start=0)

plr66 wrote:.I fully agree with your opinion, Jeff!

So do I.

rested gal wrote:

plr66 wrote:.I fully agree with your opinion, Jeff!

So do I.

You can add my name to the list, too.

I also would add to your manifesto that Respironics/Phillips need to back off on their pressure on DME's (such as CPAP.com) to charge full list price for their products. I won't buy a cpap that doesn't have software and I also won't buy one that's 40 to 50% more expensive than other, quality machines. The new Respironic machines appear to be good, but they're not that good!

Folks, now you know why I have avoided machines by the big two. I personally feel that they care little for the end user, and have produced machines that are expensive, but not necessarily better than anyone else's. When it was time to get a new 'pap, it was a no-brainer for me. The Intellipap is an excellent machine (look at the ratings), and the company is very committed to end-user care. They post here (DeVilbiss), and listen to feedback. They have provided easy access to the "smart code" system so one can monitor their therapy with no additional software. In addition, for those of us who do want more detailed reporting, they actively market their software to the consumer. So, why even think of the "big two," who treat us like naughty children who have no business in knowing anything that their "parents" don't want them to know.

By my estimate, that makes 4.5 of us against the world, then. I'll take those odds. Let's have fun storming the castle!

GOOD LUCK convincing a good share if not most of these thick-headed sleep "specialist" doctors!! Snort. I was fortunate to convince two of my sleep doctors to script a fully data capable CPAP and even a fully data capable auto xPAP - but - as far as any interest THEY had/have in the data ..... snort!!! Yeah, right.

I doubt that I would have had any success convincing them to script the fully data capable CPAP or fully data capable auto xPAP except for the fact I made it clear right up front I would NOT accept anything less. Even to the point of returning the first bare bone CPAP the local DME provider brought out LATE on a Friday afternoon handing me the B.S. that it was the fully data capable M Series Pro the script designated. I was at that local DME provider's first thing Monday morning. They mistakenly tried to tell me I couldn't return it w/o a doctor's order!!!! Ha! NOT the right thing to try to tell me! They took it back and I was at the sleep lab w/in a half hour and walked out some time later w/a script specific for the Resmed S8 Elite w/EPR after the sleep lab called another local provider to make sure they had one in stock.

So what will it take for the leaders among the sleep docs and research scientists to have enough guts to become vocal advocates for patients who need and want to see detailed data? Is it time for us to take the stand that any sleep professional unwilling to actively pursue the right of a patient to have an efficacy-data machine and the software that goes with it is a sleep doc we should actively boycott? Is it time to make that a firm litmus test? Is it time to demand that EVERY prescription from EVERY sleep doc contain the words "efficacy-data machine of patient's choice, and accompanying software at patient's request" so that DMEs would then be forced to let manufacturers know what will be needed for stocking their shelves in the future? Should that be the letter-writing campaign? Which leaders of the industry should be targeted first? Or should we just send carbonman in his ninja suit?

Ehhh, don't mind me. I just don't hold out much hope or respect for sleep specialists. BUT - if we don't try our letter-writing campaign we've just remained sheep not willing to put forth the effort. I rather like the letter-writing idea actually. In fact, I intend to compose one as tactful as I'm capable of and sending it to each of the sleep doctors in our town. Or at least to each sleep lab as I don't know of ALL the sleep doctors in the area. I'm just not particularly optimistic.

"Merry Christmas, you sheister. Start writing xPAP scripts ONLY for fully data capable xPAPs for your patients."

I received this response from Respironics yesterday:



RE: Contact Us - Information Request
Wednesday, December 9, 2009 11:30 AM
From:


Ms. Leonhart,



Philips Respironics will have software available for the patient for our PR System One line in the beginning of 2010.



Thank you,

Patient Information Services

Philips Home Healthcare Solutions

Autopapdude wrote:Folks, now you know why I have avoided machines by the big two. I personally feel that they care little for the end user, and have produced machines that are expensive, but not necessarily better than anyone else's. When it was time to get a new 'pap, it was a no-brainer for me. The Intellipap is an excellent machine (look at the ratings), and the company is very committed to end-user care. They post here (DeVilbiss), and listen to feedback. They have provided easy access to the "smart code" system so one can monitor their therapy with no additional software. In addition, for those of us who do want more detailed reporting, they actively market their software to the consumer. So, why even think of the "big two," who treat us like naughty children who have no business in knowing anything that their "parents" don't want them to know.

Thank you for this post. I'm going to save it in my file and remember it next time I'm in the market for a new Xpap machine. Sounds very much like I'm going the DeVilbiss route in the future.

Cheers,
B.