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Permalink Reply by BeeAsleep on April 26, 2009 at 6:31pm

Unfortunately we encounter doctors in all medical areas that operate this way. It could be they are overbooked, or the support staff is not trained to keep track of follow up calls. Many, many reasons this might happen. And it doesn't really matter.

Years ago I decided I would find the right doctor. What I mean about right, is right for ME. I need a doctor that will sit down, look me in the eye, listen and answer all of my questions. I understand they are busy, but for the time they are in my room I expect their undivided attention. I want a doctor that expects me to take responsibility for my own health. I consider myself a partner with the doctor. He is not the principal and I am not the student. If I don't get this attention from my ob/gyn, my dentist, my dermatologist, my sleep doctor, then I go somewhere else. It is my responsibility to put professionals in my life that support my health 100% all of the time.

Yes, it is a HUGE effort to do this. It is much harder to hold the professionals accountable, but it is worth the effort. When you find a doctor that communicates clearly with you, and that you feel TRULY has your best interest at heart it is a wonderful partnership.

I wish you the best of luck Cathy in finding a sleep doctor that you like and trust!

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Permalink Reply by Dave Hargett on April 26, 2009 at 11:43pm

I realize that most primary doctors don't have the knowledge to help you with sleep apnea, so I recommend that any patient who is moderate to severe apnea have a sleep specialist on their medical team. For milder patients, if they have problems, they should also have a sleep specialist.

While I've known mostly good sleep docs, I can understand that there are some that are not as good working with patients. I've been lucky. I first read about my sleep doc in the newspaper article that introduced me to the concept of sleep apnea - a year before I was diagnosed. About 9 months after I read the article, I learned he was in my town to speak about apnea at a public meeting, so my wife and I went to hear him. He spoke well, and after 90 minutes of Q&A that was supposed to last for only 30 minutes, I decided this might be a doc that I could work with!

Sure enough, over the years, we've become as much friends as having a doctor/patient relationship. If I don't make my annual appointment, I get a post card from his office to remind me. Over the past 15 years, I've had 3 titration studies (after my initial diagnosis and titration) and he's been good to review the results with me each time.

I agree with BeeAsleep that you have to take charge of your own doctors. I figure managed health means that we get to manage our own healthcare (within reason) so I'm proactive in choosing doctors and working with them.

My primary care doc knew a little about apnea when I started with him in 1995, but now asks advice occasionally about non-compliant patients. He often has a medical student in his office and will always send them in to do my exam (I'm always asked first if it's okay with me to have the student examine me) and tell them, "Before you start the exam, ask Dave about sleep apnea and listen to his explanation. It's stuff you need to know!" That office visit takes extra time but I figure it's time well spent if I can help jump start the education of a new doctor about sleep apnea. I had one student convinced his dad had apnea!

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Permalink Reply by michael patterson on January 28, 2010 at 11:53am

I just havent seen my doctor at all for over a year I couldn't pull him out of a line up..I went to sleep study then got my machine he supposedly read my study though...I just havent thought I needed him after my machine I sleep now.....

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Permalink Reply by susan mccord on January 29, 2010 at 10:22pm

At the risk of being repetitious, I have to agree with both Bee and Dave. I now have a PCP and 3 specialists, plus a dentist, taking care of me. I have mutual, respectful friendships with 4 of them. My sleep doctor's still being interviewed. He just doesn't know it!!!!

Susan McCord :-)

Dave Hargett said:

I realize that most primary doctors don't have the knowledge to help you with sleep apnea, so I recommend that any patient who is moderate to severe apnea have a sleep specialist on their medical team. For milder patients, if they have problems, they should also have a sleep specialist.

While I've known mostly good sleep docs, I can understand that there are some that are not as good working with patients. I've been lucky. I first read about my sleep doc in the newspaper article that introduced me to the concept of sleep apnea - a year before I was diagnosed. About 9 months after I read the article, I learned he was in my town to speak about apnea at a public meeting, so my wife and I went to hear him. He spoke well, and after 90 minutes of Q&A that was supposed to last for only 30 minutes, I decided this might be a doc that I could work with!

Sure enough, over the years, we've become as much friends as having a doctor/patient relationship. If I don't make my annual appointment, I get a post card from his office to remind me. Over the past 15 years, I've had 3 titration studies (after my initial diagnosis and titration) and he's been good to review the results with me each time.

I agree with BeeAsleep that you have to take charge of your own doctors. I figure managed health means that we get to manage our own healthcare (within reason) so I'm proactive in choosing doctors and working with them.

My primary care doc knew a little about apnea when I started with him in 1995, but now asks advice occasionally about non-compliant patients. He often has a medical student in his office and will always send them in to do my exam (I'm always asked first if it's okay with me to have the student examine me) and tell them, "Before you start the exam, ask Dave about sleep apnea and listen to his explanation. It's stuff you need to know!" That office visit takes extra time but I figure it's time well spent if I can help jump start the education of a new doctor about sleep apnea. I had one student convinced his dad had apnea!

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Permalink Reply by Mike on January 30, 2010 at 12:30am

j n k, i would never "rip into you" but I don't believe we can say "Docs diagnose, therapists provide therapy" and leave it at that -- because our therapy needs evolve over time, with changes in our weight, with changes in how we sleep, etc. As those therapy needs evolve, settings need to change with them, and for better or for worse, doctors need to be in the loop, if only to write prescriptions for pressure setting changes. Now, i am not of the view that the health care system should require physicians to make setting changes (they're way too overqualified for that kind of stuff and it's a wasteful extravagance codified into law by special interest groups -- probably the American Medical Association): the machines should be good enough to handle changes on the fly or patients should be encouraged and empowered to make the changes themselves. But that's not the current state of play.

Next problem is that there is no billing code for patient monitoring/education/training/support, so DMEs and therapists have little incentive to provide this service.

j n k said:

I realize that my opinion may be in the minority on this subject, but I only saw my sleep doc once, liked him, but never saw a need to see him again. I did speak to him over the phone a couple of times, but that's it. And I had an AHI of 114.7 on my diagnostic study.

To my way of thinking, the sleep doc had done his job once he wrote the Rx for what I needed. After that, it is supposed to be the job of the RT at the DME to supervise treatment. Docs diagnose, therapists provide therapy.

I think a sleep doc should be available to a patient if the patient needs someone to kick the RT's butt over something, but other than that, if the problem was found and the right treatment prescribed, the sleep doc earned his money. Further office visits to ask how things are going would be a waste of money for me, even if the money doesn't come out of my pocket directly. Needless "follow-up" visits are the sort of thing that jacks up the price of healthcare.

I am not offended if everyone wishes to disagree with me, so feel free to rip into me. I just think that once the right therapy is arranged for, it is the people whose job it is to provide the therapy that should provide the therapy. If the doc has to do that, the therapy providers have failed and their role in sleep medicine might as well be revoked and removed completely. We could just let docs be the DMEs, and turn all the brick-and-mortar DMEs into taco stands or something. :-) If respiratory therapists aren't providing respiratory therapy, what do they do, then?

jeff

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Permalink Reply by Tim on January 30, 2010 at 4:52am

I have never met the doctor who prescribed my current CPAP. A PA at my PCP's office wrote the script for a sleep study. The only people I had been in contact with at the McSleep Center, which is part of a chain of about a dozen centers, were the techs who administered the test and two people in an office somewhere; one set up the appointments, and another called me and arranged sending my script and sleep study to a DME. The people were polite and didn't bat an eyelash when I asked that a copy of the script and study be sent to me.

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Permalink Reply by Judy on January 30, 2010 at 6:50am

This is where you and I disagree, jnk. To my way of thinking the DOCTOR has the RESPONSIBILITY to see to it that the proper education, support and advice is provided to me. He's the one who scripted it. I don't much care if he is the owner or an employee of the sleep testing facility. It is his RESPONSIBILITY to ensure that trained, professional staff are available to me to answer my questions, etc. For a long time I was of the opinion that I would NOT do business w/a sleep lab that did NOT provide a sleep specialist DOCTOR for patient consultations. UNTIL I realized how many sleep specialist DOCTORS weren't all that well-versed in the many aspects of sleep apnea despite sleep being their sub-specialty. I've lowered my expectations to being willing to accept a consultation w/a knowledgeable, experienced, patient RRT, RN, RPSGT, who is available to answer questions and explain things to my satisfaction under the supervison of a sleep specialist doctor. I will not tolerate some prima donna glancing at the tech's scored results and FAXing his dictation to my referring doctor and leaving it up to my referring (family) doctor to write the script and see to it that I get the education, support and advice I need. For one thing I want to reassure myself that the sleep specialist actually UNDERSTANDS the raw data scoring even if I have no way of knowing if he actually, according to his accrediation requirements, rescores the PSGs himself before signing off on it. They want to charge top dollar then let them earn it.

This new regulation that the scripting doctor must consult w/the patient w/in 30 days of the start of CPAP therapy is probably just going to encourage more sleep "specialists" to foist off the scripting of the CPAP therapy to the referring doctor.

I've said it before many times and will say it again: I respect the CPAP manufacturers for their development and improvement of the therapy and data capabilities of their CPAPs and I respect the RPSGTs who do the PSGs. The DME provider RRTs and sleep specialists are way down my list. There are exceptions, of course, but that's the way I see it.

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Permalink Reply by Judy on January 30, 2010 at 9:17am

I agree w/you, jnk, that we can't expect sleep doctors to understand the brands and models of xPAPs available beyond their type, i.e. CPAP, bi-level, SV, etc. I've given up expecting them to understand an APAP and how to properly "use" them, i.e. reasonable pressure range settings. We certainly can't expect them to know the "comfort options" of the various devices, altho by george, most now understand C-Flex and EPR!

However, since they receive training in being able to read AND SCORE a PSG and are supposedly REQUIRED to be able to do so for accredidation, they certainly should be able to understand the graphs provided by fully data capable xPAPs!!! I strongly suspect far too many of them "gurge and purge" that portion of their sleep specialty training dealing w/PSG scoring and understanding the "graphs" or whatever they call the PSG "squigglies".

You had that rarity, a good sleep doctor, jnk! And, yes, our own personal experiences do skew our views on an issue. Certainly mine have.

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Permalink Reply by Mary Z on January 30, 2010 at 9:23am

j n k, out of curiosity how have your numbers been all these years? I still haven't, after 21 months, got my numbers under control and
still see my sleep doctor fairly regularly. The next visit will be four months from the last. That gives me time to get used to and to respond to the new numbers. I still have a lot of the symptoms of sleep apnea or I wouldn't expect to see him as often. He really seems to know what he's doing and carefully considers the changes he makes. They are not the changes I would make had I been in charge, but I just don't know enough about titration.
I'm glad you've been able to manage your own treatment, but you are more knowledgible than me and I still need backup.
Mary Z.

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Permalink Reply by Judy on January 30, 2010 at 9:46am

MaryZ, after 21 months I would be inclined to suggest to my sleep doctor that 3-4 months between therapy changes is being overly generous w/your discomfort limits. Once you are acclimated to CPAP therapy and wearing a mask and have a relatively comfortable, low leak, mask I wouldn't be satisfied w/more than 30 days between further decisions and adjustments to my therapy until we found my "sweet spot" of therapy needs.

I realize that those of us that need a VPAP Auto are a bit more complicated, "difficult" challenge than the run of the mill OSA sufferer - but 90-120 days is stretching what 30 days should be able to disclose.

And, yes, I'm kinda the pot calling the kettle black because I've let things go on too long at times simply because I get so d*mn disgusted w/these sleep doctors. All that does is prolong my suffering and no one but myself to blame.

"I want to see you in 6 months unless you are having problems, then call" (I call, twice, and no response - until the day before the 6 month appointment as a reminder of the appointment).
"You ask 'too many unnecessary' questions".
"Those questions are irrelevant".
"You shouldn't have the data from that VPAP, its not reliable". And then a long tirade about xPAP data wasting my consultation time and saving him having to answer any questions.
"Stay away from the internet, there's all kinds of quackery out there".
"What is PubMed?"
"You shouldn't be reading those PubMed abstracts. You can't understand them".

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Permalink Reply by Tim on January 30, 2010 at 10:43am

I saw my first sleep specialist almost 15 years ago, and he did quite a bit of follow up. If I hadn't already been on CPAP when I had my most recent sleep study at the McSleep center, I would have been totally lost. My PCP knows nothing about sleep apnea and doesn't want to talk about it. My dentist is very knowledgeable about sleep apnea and fibromyalgia (which I also have), but he is my dentist, not my sleep specialist or rhematologist.

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