Kind of cowardly to pose a challenge and then lock the thread, Dude.

Anyway, to continue our discussion about patient advocacy.....

Mike wrote:

Guest,  as bold as your statements are, you neglected to read the posts.  I NEVER said treat yourself, I said be your own advocate.  Being your own advocate  does not mean taking your doctor out of the equation.  My doctor KNOWS that I am using an AUTO, and APPROVED of the settings beforehand.  The machine when ordered from them was WIDE open so I had to contact my Doc for the range.

Here is the definition of Advocate:

a person who speaks or writes in support or defense of a person, cause, etc.

And BTW, I wasn't aware of the lengths that that site would go to to make money off of Apnea Suffers till I saw their behavior when I started to help the ASAA.  IF their Goal was educating the Apnea patient, why are they the ONLY forum not to list other resources?  (and I am not just talking about our site, they don't link to TAS or any other resource)  We link to their forum because we know that there is info that people will benefit from despite the attitude that has been show to myself and other moderators and the ASAA.

As Rested Gal has stated a number of times, the more information the better.  That is why we still have a link to that site.  And thats why other sites link there.  Not because we approve of the treat it yourself attitude, but because there is still good information on that site.  As soon as there are links to other Apnea Resources are on that site, I will retract my statement.  But until then it sure looks like they don't want anyone to get information from any other source than them.  



h t t p : / / www . sleepapnea . org / resources / links / supportgroups . html  (Which is linked off of the main page)



But feel free to hide behind your Guest ID and post, a rather cowardly act to say the least.  At least I state something and put my name to it.  

These opinions expressed are my own. And do not necessarily reflect the opinions of the ASAA.

By all means......RETRACT.

h t t p : / / w w w . cpaptalk . com / cpaptalk-articles/more-sleep-websites.html

It's under the Yellow Lightbulb "Our Collective Wisdom" subheading "More Sleep-Related Web Sites"

Judging by the popularity of the forums and reading the topics on them, it's apparent that the medical community is failing their patients in this therapy, but yet this forum advocates going BACK to the "Medical Mental Midgets" that created their problems in the first place.  If the failure/success rate in this therapy is still about 50%, that's NOT good.  If you don't give these people some decent answers, why bother?

I started my therapy about the same time you started yours.  I've never had any particular problems with mine, but others definitely have.  The more we can teach them to be in control of their therapy, the better off they'll be......which includes the suggestions of having data-capable machines, software, how to interpret their reports and how to adjust their machines.

An excerpt from:
h  t  t  p : / / en . wikipedia . org/wiki/Self-advocacy

"As the medical field has become more complex, along with the myriad of problems with insurance coverage, patients have had to become stronger self-advocates for their own care and for the insurance coverage due in their case. Every time people speaks up for themselves to resolve a problem, they are practicing self-advocacy. Patients should know their rights, and be willing to honor themselves by being proactive in their care. In all medical situations, patients must be given, must read, and must sign medical consent before procedures, tests or surgery. If patients do not understand anything about their care, they should ask questions. The simple act of asking questions and fully understanding what will be done in your care is an act of self-advocacy. Through being one's own advocate there is patient empowerment"


Depriving the patients of the information to take control of their own therapy is only contributing to the failure rate.

SOME of us want to do something about that.

"Patient Advocate"

.

From my perspective, I don't think anyone who has been part of this forum for the past 2 weeks is being fooled by who you are *guest* poster. I'm certain your IP address can be checked with no problems. If you are unhappy with locked threads, IMO imagine how unhappy you will be if you are banned from even being able to lurk and read these boards.

hmmmmmm....

you may want to consider or reconsider you actions and behaviors.... we're on to you.


ed to add: IMO

Nope sorry hidden links for members only don't count...

 Article Index


Sleep Apnea Awareness
Visiting The Sleep Lab
Visiting Your Doctor
Get Started Treating Sleep Apnea
Selecting Your Obstructive Sleep Apnea Treatment
Selecting Where To Purchase Your CPAP Equipment
Selecting Your CPAP Equipment
Help For New or Struggling CPAP Users
CPAP Safety, Warnings and Pitfalls
Common Equipment Problems
Travel With CPAP
Work Life and Legislation Concerning Sleep Apnea
CPAP Humor and Quotes
Forum Tips
 

There is no heading listed that way there.

As to overthrowing the medical community, good luck with that.  Practicing medicine without a license is illegal, but at least you clarified where you stand.  Thanks for proving the point.  

I will be moving this thread to late night so feel free to register so folks know who you are.

Anonymous wrote:

An excerpt from:
h  t  t  p : / / en . wikipedia . org/wiki/Self-advocacy

"As the medical field has become more complex, along with the myriad of problems with insurance coverage, patients have had to become stronger self-advocates for their own care and for the insurance coverage due in their case. Every time people speaks up for themselves to resolve a problem, they are practicing self-advocacy. Patients should know their rights, and be willing to honor themselves by being proactive in their care. In all medical situations, patients must be given, must read, and must sign medical consent before procedures, tests or surgery. If patients do not understand anything about their care, they should ask questions. The simple act of asking questions and fully understanding what will be done in your care is an act of self-advocacy. Through being one's own advocate there is patient empowerment"

Being a self-advocate does not mean you have carte blanche to self-diagnose and self-medicate.  You missed another part of the wikipedia information (interesting link, btw):

Quote:

Self-advocacy can include any action, verbal or written, which is intended to outline and describe a particular problem an individual is encountering, and intended to create the interest and action by another person to assist the person in resolving the specific problem. Thus, a person might be self-advocating to an individual (such as directly to a nurse or doctor), to an institution (such as a hospital, clinic, or agency), or to a company or organized body (such as an insurance company or a State/Federal agency.)

Since individuals know their own situations the best, they can often be the best advocates for themselves. It helps if they can communicate a description of the problem in clear and concise fashion, and are able to listen to the responses from the person/agency to whom they bring the problem.

Patients are often more successful at self-advocacy if the particular problem they are describing also connects to some aspect protected under the "Patient Bill of Rights." However, self-advocacy can also resolve other situations, such as differences of opinion between the patient and doctor, or personality conflicts, or even minor problems in delivery of health care.

Click here for link to wikipedia page


According to this definition, self-advocacy means working with the medical community to resolve problems and gain information, even it means taking steps to communicate problems.  There's nothing about self-diagnosing or self-medicating.  I don't think our site encourages people NOT to push for information and explanations of their condition and medical care.  How many times do we recommend patients push to get copies of their sleep study, or seek second opinions, or learn more about the medical aspects of their condition?  But we don't advocate patients self-diagnosing or self-medicating, because like it or not, patients need the care of a doctor who is knowlegable about their entire health.  We do point people in the direction of information, including other sleep apnea forums.  Personally, I don't understand your point.

(bolding by me)


Linda


_________________
Click here for link to FAQ and topics
Click here for link to section on machines and masks

I happen to follow three apnea forums and I find info of value in all three. I prefer to work WITH my doctors but it isn't always easy to find good doctors to work w/especially given the constraints of HMOs, PPOs and insurances. I found that out the hard way several years ago during a medical crisis when my family doctor died!!

Having had two "Marcus Welby"'s (for those of you old enough to remember him) who died on me and having had the opportunity to visit Mayo Clinic in MN over a span of some 50 years w/both family and for myself I KNOW what a good doctor is and what I expect of a doctor - and believe me, those types of doctors are harder and harder to find! We had better doctors 30 years ago than we do now. We got better medical care 20-30 years ago than we do now in this country.

That being said: the sleep medicine field is gaining recognition, and unfortunately too many are seeing it as a "cash cow". Finding a good sleep lab that has interest in its patients beyond that titration study and ordering of equipment can be difficult. Just as difficult is finding a sleep DOCTOR who has an interest in their patients beyond dictating an interpretation of the titration results and maybe writing a generic order for equipment. A good share of the "sleep doctors" don't even bother to look past the Usage page of any data downloads. Many sleep labs don't even have the software to do data downloads and must rely on the DME suppliers to do so. A good many sleep doctors don't even really understand or care what data the fully data capable xPAPs can provide.

I won't even get into the sorry state of affairs with local DME suppliers and the lack of service, assistance and adequate equipment they supply or fail to supply.

Ideally, the sleep profession will catch up w/the Endocrinologists and doctors who treat diabetis and the interest, assistance and guidance they provide to their patients in monitoring and treating their diabetis - as well as recognizing and accepting that patients can LEARN to make adjustments to their therapy as needed.

Until then what is the poor apnea patient who has limited choices of doctors and DME suppliers due to insurance whose choices are all LOUSY at providing information, support and guidance?? THANK GOODNESS for the apnea support forum you are so roundly criticizing!!! They've saved many an apnea patient from giving up on xPAP therapy.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Actually we are not roundly criticizing it.  We link to it and agree that there is a lot of good information on it.  That said, advocating playing doctor, and breaking federal law doesn't get a pass.  If they are serious about providing info, then they should keep it within the law.  And they should have no problem linking to other resources openly, not hiding it for "members only".  There are many sources of information and people should have that choice no matter what forum they find.  Thats why we provide it.  Thats why other forums provide it.  

This started because someone asked whether or not the auction site that was started was legal and safe.  According to their own admin, they are not, unless of course they run it.  That is not imho the best interest of the apnea patient.  Its in the best interest of the business.

We have absolutely no problem with folks adjusting their own pressure under the guidance of a physician.  (That IS what happens with diabetics, the docs don't just hand them a bunch of needles and insulin and tell them use as much as you think you need.)  Sleep Apnea should be the same.  But you don't see folks on a diabetes support board telling other folks, go buy some insulin and start using it til you feel good.  On that forum it has turned into a DIY shop.  Don't like your Doc?  Forget about him once you have your machine because we can tell you what you need to do.  Need to adjust your pressure?  Sure here are the instructions.  Meanwhile they have NO IDEA of that person's medical history or condition and could very well be assisting them in harming themselves, or at the very least not getting the right therapy because they turned it lower because it bothered them.  Sure docs get it wrong, sleep specialists too, but that doesn't give us the permission to throw out the baby with the bathwater because we aren't happy with it.  Sorry, but some well meaning folk on a internet forum do not make a good substitute for REAL medical training.  I am thankful that the guy that had problems with his pressure on this board listened and went back to his doc instead of trying to DIY.  His doc stated that if he had continued he would have lost his hearing.  If he had been on that forum, they probably would have instructed him to just turn it down, cuz the doc doesn't know anything.  Thankfully he found this site first and not that one, he probably owes his hearing to that fact.  

http://www.apneasupport.org/viewtopic.php?t=6161&postdays=0&postorder=asc&start=0

So, is there good info there?  Sure, but there is a lot of info that might lead folks into some bad medical decisions thinking that they can DIY.  (Do It Yourself)