The sleep industry and us, a presumptuous view.

[goose]

Great post Rose!!!
I tend to think of this group as a family. A family afflicted by the same condition that we are continuously trying to help each other cope with.

My sleep doc is a Neurologist that has specialized in sleep conditions. In our last meeting, which lasted 45 minutes, we covered everything you can think of on the subject of apnea. I think one of the reasons it lasted as long as it did, is that I'm an educated patient and she appreciates that and said so.
When I mentioned this forum, she looked at me and said "There are a lot of smart people on that forum..........Smarter than me".......I find that honesty refreshing.

I got lucky. I have an excellent GP and an excellent specialist.

I do believe that collectively we are a lot more informed than the general medical community would like to admit, because to admit that patients are educated somehow diminishes their perceived control.

Great thoughtful responses as well!!!
cheers
goose

[RosemaryB]

[quote="j.a.taylor"]Great post Rose!

It's just a reminder that we all have an responsibility to advocate for ourselves.

We all read the horror stories, but there are DME's and Doctors out there who are willing to listen to the patient's perspective, and see that as a major part of their continuing education.

So when we do our part, and educate the professionals, we'll begin to see change in the medical profession. And when we find a great Doc who's willing to listen, make sure we let them know how much they're appreciated.

Now if only I could find a good dentist, who would let me talk a bit before shoving something in my mouth . . .

[RosemaryB]

Great post Rose!!!
I tend to think of this group as a family. A family afflicted by the same condition that we are continuously trying to help each other cope with.

My sleep doc is a Neurologist that has specialized in sleep conditions. In our last meeting, which lasted 45 minutes, we covered everything you can think of on the subject of apnea. I think one of the reasons it lasted as long as it did, is that I'm an educated patient and she appreciates that and said so.
When I mentioned this forum, she looked at me and said "There are a lot of smart people on that forum..........Smarter than me".......I find that honesty refreshing.

I got lucky. I have an excellent GP and an excellent specialist.

I do believe that collectively we are a lot more informed than the general medical community would like to admit, because to admit that patients are educated somehow diminishes their perceived control.

Great thoughtful responses as well!!!
cheers
goose

What a refreshing response by your doctor! I think you were lucky to find your GP and specialist, but your savy as a patient has something to do with your finding them, too.

I remember that years ago there was a book by Norman Cousins entitled Anatomy of an Illness as Perceived by the Patient. The attitude of Cousins' physician and their relationship seemed exemplary. Not as possible today with the tight rein on how long a doctor can spend with a patient, but still possible.

[ozij]

Excellent post, Rosemay, and excellent responses.

And this persepective is extremely important:

.....plus we each have a deep first hand knowledge of our own body-that cannot be taught in medical or nursing school. The thing that could be taught is to respect the patient's story of his/her illness and the response to treatment.

O.

[RosemaryB]

Excellent post, Rosemay, and excellent responses.

And this persepective is extremely important:

.....plus we each have a deep first hand knowledge of our own body-that cannot be taught in medical or nursing school. The thing that could be taught is to respect the patient's story of his/her illness and the response to treatment.

O.

I agree. That was one of the features of the Norman Cousins book that I mentioned, His doctor respected his deep first hand knowledge of his body. This is the book where he worked on feeling happy via watching funny movies, etc. and was cured of a serious illness. Much of this had to do with his intuitive understanding of what was going on with his own body and the illness.

I believe that many doctors are taught to disbelieve this type of evidence, referring to it as "anecdotal". The term anecdotal evidence is usually coupled with an attitude of skepticism. Now if you are presenting "anecdotal evidence" as proof (or strong support) of a scientific theory, you are skating on thin ice. However, if you are using direct experience of the patient in front of you, that evidence should be seen in a different light. That is part of the clinical picture and important feedback about the treatment for that individual. It is very important evidence clinically, no one is trying to use it to support a scientific theory. I believe that many doctors were not taught to distinguish methods of practice from scientific standards of "proof." This has hurt clinical practice. A clinician should be seeking to apply what has been researched using the scientific method. This is application and should have a different set of criteria.

What are some differences? For one thing, when we do research, we are working with a whole group and finding if a treatment makes a difference statistically (Statistical significance). Of necessity, we generally have to isolate a single factor to study. (Or sometimes a very few factors) So we are studying something simple and we are finding "proof" based on statistics.

When we are applying treatments in the clinic we are faced with individuals who have many factors going on. I know a doctor who works with elderly patients and she says that as people get older they become more and more varied one from another, they become more individual with each passing year. There are many factors at work in the elderly. That's why much research is done with younger people, because there are too many varied factors at work.

So when the doctor applies research (via using a medication or other treatment) he or she needs to pay attention to the actual person in front of him or her. That is the job of the doctor in the clinical setting. It is distinct from research.

I know that there are other factors as work in the medical profession, such as fear of lawsuits, standards of practice, etc. However, I do believe that this mistaking research and application is one of the errors that is made by doctors, thinking they are practicing good medical science when they dismiss what the patient says about their own condition.

I'm very sensitive to many medications. I remember a conversation once with a pharmacist. I had been taking a medication for a severe flu. I would fall asleep and wake after about an hour. I called to see if this couldl be the cause. The pharmacist said a flat "no." I dug deeper only to find that this was one of the side effects. The pharmacist said, "It's very rare to have this, it only happens in 1 in every 100 patients. I'm sure it couldn't be the problem." My thought was "I wonder how many people he sells this medication to over the course of a year? Hundreds?" Then some of us will have a reaction and those are the ones that will call to ask about it.

[alv7722]

My sleep quack that fired me got his degree in Peru. After $2,000 with him, he knew I needed a machine and refused to write an rx without another $1500 sleep study for titration. I got a machine anyway without a rx, my life changed the next day. If I hadn't done this on my own, I would be either dead, injured in an auto accident, or at the very least lost my job. I could not wait the 45 days for him to fiddle around. He could not understand "emergency", only $1500. I'm going to take him to small claims court, as I received no value whatsoever for what he charged me. If nothing else, him and his office manager can answer my questions in front of a judge, since they would not answer them for me! I could have had relief two weeks sooner if he had written an rx, for that, I am going to ask for punitive damages. I know the second titration study is accepted "protocol", but there are several good studies referred toon this forum that say self titration is just as good or slightly better, than another sleep study. I am grateful to those that have posted on this forum that gave me the knowledge to do what I did.

[glfredrick]

I just saw my "sleep doctor" for the first time (finally -- over 2 months in!).

He was best described as a cold fish. He didn't want to talk. He didn't care about my comfort. He didn't know that software was available to read the card, and he was adamant that I not read my own card, nor take charge over my own treatment in any way.

He took me to the cleaner for playing around with C-FLEX and A-FLEX. He then asked me a whole bunch of questions that were all very evident from he print out in front of him -- how many hours a night I was sleeping with the machine, was I using it every day, etc.

By the time he got around to making his final recommendations, I was fit to be tied...

In the end, he changed my diagnosis from 16 pressure to 13 -- a number he drew out of his hat. He didn't have a titration study to see that 13 was better than 16, nor did he have any reliable data to go on -- just that 13 would work... Now, from reading my own chart, I can see that the highest pressure the machine gave me at any time in the past 30 days was 12... He figures 13 is one higher than 12 so that's what I get -- don't argue.

He did recommend me for purchase of the machine, and I'm keeping the M-flex, which I'm happy about. I can change my own settings at will and can manage my own health care, thank you very much. Other than the fact that I need a scrip from that dink, I'd drop him like a hot potato. I think I'll check with my GP and see if he can write me the continuing scrip for the future so I can stop paying this yayhoo...

I also think that I'll continue on A-FLEX...

Oh, the reason he didn't like A-FLEX or C-FLEX is that it "chases events" instead of just blowing me up like a balloon... I suggested that he was not up to speed with the latest machines, that react within a couple of breaths (really...) and he took offense to that as well. I think that my charts tell the real story -- it is working well, and I'm getting better sleep than ever.

[Guest]

I got a machine without an rx. It was shipped from North Carolina. I would really have rather purchased it from cpap.com. I got a dood deal on a new machine, all in factory boxes, etc, but I still would rather have got it through legitimate channels. Maybe NC allows sales w/o a RX. If so, it would seem that cpap.com would be able to do the same somehow. I think I saved my life, or at least my job for sure!

[tomjax]

When I was a pharmacist, I soon learned that many of my fellow pharmacists graduated and never opend another book or even read package inserts.
Many would give sound bite answers to patients questions which rarely showed any bit of knowledge.

"iot is for your heart" it is for your blood pressure". "You need to aks your doc about that"
I am afraid many docs are this way too andrafrely get concerned with many conditions and simply refer them to specialists.

Many of the younger docs are very knowledgeable of the science of medicine, but severely lacking in the art of medicine.

The patient suffers.

Sleep docs may understand the medicine and physiology behind OSA, but rarely know ANYTHING beyone their diagnosis about the practical side of machines and that which is discused here.

All docs are like a box of chocolates-----------

[rested gal]

I think I'll check with my GP and see if he can write me the continuing scrip for the future so I can stop paying this yayhoo...

Excellent idea!

[RosemaryB]

[quote="alv7722"]My sleep quack that fired me got his degree in Peru. After $2,000 with him, he knew I needed a machine and refused to write an rx without another $1500 sleep study for titration. I got a machine anyway without a rx, my life changed the next day. If I hadn't done this on my own, I would be either dead, injured in an auto accident, or at the very least lost my job. I could not wait the 45 days for him to fiddle around. He could not understand "emergency", only $1500. I'm going to take him to small claims court, as I received no value whatsoever for what he charged me. If nothing else, him and his office manager can answer my questions in front of a judge, since they would not answer them for me! I could have had relief two weeks sooner if he had written an rx, for that, I am going to ask for punitive damages. I know the second titration study is accepted "protocol", but there are several good studies referred toon this forum that say self titration is just as good or slightly better, than another sleep study. I am grateful to those that have posted on this forum that gave me the knowledge to do what I did.