Don't blame RT/DME

[-SWS]

Please go away! I feel my space being violated by you.

Please speak for yourself. I'm getting sick and tired of the rate at which the so-called "self empowered" around here literally chase away professional views from this forum.

There's "self empowerment" and there's "social inebriation with the power of banding together". It's that last one that makes it so damn tough to get much-needed professionals to stay around on this message board.

The CPAPTALK charter says absolutely nothing that would encourage patients to create an inebriating "vacuum space" around here so that they don't feel violated by the views of well-meaning professionals...

[LinkC]

SWS--

There appears to be an ignorant and insecure minority here who feel threatened by professionals. So much so, they won't even tolerate a rational dialogue with those who disagree. Intolerance is never pretty.

[Sleepy Taz]

Please go away! I feel my space being violated by you.

Please speak for yourself. I'm getting sick and tired of the rate at which the so-called "self empowered" around here literally chase away professional views from this forum.

There's "self empowerment" and there's "social inebriation with the power of banding together". It's that last one that makes it so damn tough to get much-needed professionals to stay around on this message board.

The CPAPTALK charter says absolutely nothing that would encourage patients to create an inebriating "vacuum space" around here so that they don't feel violated by the views of well-meaning professionals...

Here here! Instead of trying to push the professionals away, we should help to educate them from the user point of view. Sure we do not agree with everything they say but that is also true of some of the things posted by Cpap users. There are some professionals that want to help and can benefit from our collective wisdom and maybe add another perspective that we as users do not see. You do not have to agree, just be respectful of their right to also post on this public forum.

[rjjayrt]

first of all I am an RT and part of my daily job is to setup and educate patients on/for cpap. I am also a user of cpap. I'm currently on 14cm, on an M seriers pro with cflex and I use a flexifit 431A full face mask. As far as what I offer my patients, its really simple, I would not give a patient something I would not use. I take all phone calls. I;m usually on call every other week 24/7 for after hours calls. I've routinely changed masks on patients when necessary or just because they'd like to try something different. Not all DME's are bad. As I said earlier, I educate until the patient is comfortable with what there doing and why there doing it. I don't use cheap equipment, only machines which are fully therapy/compliance downloadable and just about every mask made (not really, but most). Most importantly I have OSA and as a user I think I retain a unique perspective on cpap. I'm on this forum to educate myself, help educate others who may want help and to help myself on new tips and tricks. Thats all. I just have a different perspective as it relates to DME and sometimes need to defend those of us who I think are trying to do it right.

[Uncle_Bob]

Absolutely, I will and have many times.

Well if you refer patients here then you may as well given them the clinical manual because all the information is here anyway

I should add my 2¢ in that i feel lucky that i have found a good doctor & RT who are willing to work with me. They have even answered my questions by phone and email, especially regarding pressure changes. I hear of some doctors requiring an office visit and a co-pay for each pressure change.

Don't blame all RT/DME's is what i think you are getting at

[rjjayrt]

your absolutely right.

[LinkC]

"May as well" is the important part. He never said patients couldn't/shouldn't have the manuals. He said HE couldn't give them out in good conscience.

[Uncle_Bob]

"May as well" is the important part. He never said patients couldn't/shouldn't have the manuals. He said HE couldn't give them out in good conscience.

Interesting though how he could not give them out in good conscience while on the job, but on the other hand has no problem referring them indirectly to a place providing the same information.

His hands are tied by his employers but deep down he knows what is best for the patient

[plr66]

I say "here, here!" to rjjayrt for efforts to "do better" than the seeming great majority of DME RT's. I thought it was an incredible thing when I found the RT at my sleep study center who did not even bat an eye when I told her I was monitoring all my data and changing pressure settings on my own. In fact, she has been most respectful and encouraging. This contrasted enormously from my first brief and horrible experience with a DME whose RT outright lied to me on 3-4 major issues, and attempted to block my progress in getting a machine to enable my tracking my own data. Needless to say, since I had already educated myself here, I fired that DME in short order, returning their equipment within the first 30 days.

I hope you will stick around rjjayrt, and continue to educate your consumers well with what you learn here. I have to say that I can see your reluctance as an employee, to hand out the so-called and labeled "clinician's manuals"--especially if your employer opposes that practice and if legal liability could become involved. So for now, just please keep referring folks here for that information, and do what you can to educate your DME!

[alnhwrd]

Rjjayrt, thanks for posting and joining. Please understand that there are some here who have burned by their DME's so if they see a post by someone who works for one its like waving a red flag in front of a bull. Hopefully they will remember that they are guests of a hosted forum and remain courteous at all times, but don't take it personally if they do not.

For the record, I am very much in favor of patient managed CPAP therapy, and believe that the best results are gained by those willing to invest the time, thought and effort to get the most from their treatment. After two years with 100% compliance, I am very comfortable with changing/having changed my pressure, not willy nilly but in a careful, well monitored manner. The reason so many people here are in favor of users changing their own pressures is because they have tried it and it worked for them, often with more success than the original sleep study. I know that there are many people who want to be patients and simply take their machine and mask home and use it at the prescribed settings and let their docs and guys like you make all the suggestions and changes. I hope that you can understand that these type of patients are the ones that most likely to fail, and that the ones here who are involved with their therapy, and will and do change their pressures, are the ones who are receiving better treatment and will succeed in using their machines long term. I understand that you are prohibited by law from changing people's pressures without a prescription, and don't ask you to do anything that would jeopardize your career or your standing. I also hope that as you read what you will find here you will see the value of it and perhaps find ways to encourage your patients along a proven path to CPAP success.

In any case, any advice or encouragement you can give to new and struggling users will always be welcome here.

Alan

[plr66]

Just as a related "aside"--NPR had a story on the Morning Edition a few days ago about the vast increase in consumers opting to educate themselves with online forums about their medical conditions so they can manage their own treatment & medical decisions rather than leaving it at the feet of the MD's. I was hoping they would list cpaptalk.com as a shining example, but didn't happen....

[deadhead77]

On the assumption that there is no user qualification requirement involved it would seem ridiculous to present someone with a diagnosis of sleep apnea, provide them with the equipment that will ease this affliction and then, allow them to fiddle with it!

It seems to me that the cases for both sides of the argument need to be joined into one considered approach. Why not create a certificate of competence that that would allow those that wish to do so, the opportunity to study and become qualified to have a measure of control of the treatment. This would ultimately become a part of the initial presentation of each diagnosis as an option for the patient to take from day one. It would introduce an element into mix that would definately encourage the new patient to look more closely at what is wrong with them, no matter how casually or badly the diagnosis is given and followed up.

I am an absolute expert on not understanding stuff, especially technical stuff. I pick up the TV zapper, get it to turn on the telly and then lose interest in all the other confusing function buttons. The vast majority of people of my generation are the same, sick to bloody death of more sodding technology learning curves.That why so many people drop out of treatment I think, it's the TV zapper syndrome.

Most people just want it fixed or to go away to a greater or lesser extent, but some will have a bit of a go at understanding and working things out themselves.

However if they have just been diagnosed with osa they are in our old world of brain fog etc. They have just got their first mask, their nose is sore, their face sounds like drunken bagpipes every night, they have just entered the cpap learning pantomime.

How receptive are they to any suggestion that they may be able to monitor their blood oxygen levels by tweaking this that or the other.

They have just not had enough preparation for the journey.

Would you honestly allow them to blunder about with their settings before they show that the treatment has improved their general mental state, proved that they have grasped the basic priciples of what the equipment is designed to do to/for them??


NO, for the vast majority I think that the whole delivery of information should be graduated into various levels of competence that is monitored and rubber stamped by professionals.

This very forum could develop a bomb proof ideal progression from first diagnosis with guidance and the authority of experience.

Though what would ever incentivise all concerned??

[Llama]

I put them on machines they need, and if they have a request for a particular machine I do what I can to provide it. I don't own the company, I have to abide by what my companies policies are as it relates to equipment rental/purchase and I have to abide by what the insurance company says.

That all sounds great, but it really only works when you're transparent as to which hat you're wearing at that moment.

Are you recommending a specific machine because it "abides by your company policies" (leaving off the implicit "as they relate to corporate profitability") or because the insurance specifically restricts filling the script with a specific machine or because you don't have the item in stock or because you don't know a particular machine or ad infinitum.

I suspect that many people here would accept the profit motive of a private business if they were not being duped by someone whose motives are not always clear. As I mentioned in my DME struggle thread, when the DME's present themselves as a pharmacy when (many/most) are actually a car sales lot the customer/patient does not know how to act/react to protect THEIR best interests.

There just have to be good DME providers and you may very well be one, only time here will tell and I hope to see you around!

[plr66]

...Though what would ever incentivise all concerned??

Well...wanting to feel better did it for me!
And with all that other tech stuff....we are always given manuals with hundreds of pages of tedious detail, which each of us uses to whatever extent we have an intention and investment in learning. When we get a Rx drug, we are given a sheet with all the pros & cons, special instructions, risks, etc. And I dare say that I have made my own decisions on occasion about whether to take that medication exactly as Rx'd, as I tend to be very sensitive to meds, and need less than Rx'd. But I educate myself first. Don't need a certificate to do so, but I do take responsibility for any consequences of my choices.

[DJ_Boxer]

deadhead: You are absolutely right mate! Even when I got my machine, they didn't have the whole thing set-up on the screen. A competency certificate or something should be looked at. More and more patients are becoming educated consumers. Along the lines of the tv zapper analogy: I had a telly that only had access to closed captioning through a menu system(now it is like that with my main tv and cable box: I have to turn the box off and go into a menu) .
On a side note to this: The DME's and their employees that get the patients set-up will also have to take this competency thing, thereby improving the quality of DME's.

DJ