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Mike started a discussion about this at http://www.sleepguide.com/forum/topics/npr-web-chat-on-sleep-apnea .
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
Views: 1998
Replies to This Discussion
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Permalink Reply by Toni Cacioppo on
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Monica,
Call your DME provider (the people that suppy your mask) and INSIST that they do a re-fit! It's their job!!!!
Toni Cacioppo said:Monica said:ok - question for ya'll - how do you get the data off your card and onto your computer? I have been curious about my numbers/info, but have no clue how to transfer info.
also - I have noticed that I seem to be getting tired around 5 or so in the evening and am waking up a little sleepy. the DME adjusted my mask for me when I first got it and told me to clean it (completely taking it apart and scrubbing the whole setup) at least weekly. I took the strap off to soak the mask in vinegar water to sterilize it at the end of the first week, then had to put it back together - it has not really been comfortable since. I have a nasal mask with the gel stuff. the top part of the strap is velcro and (like a dummy) I didn't mark it before I took it off the mask. I have had to readjust it twice, and it still has issues. it feels too tight or too loose around my nose - the first couple nights, I couldn't get it to seal properly, when I finally did, it felt like it was plastered to my face! this is another reason I am curious about my numbers - I want to see if it is leaking at night. my husband mad the comment the other night that it "sounded like (I was) trying to snore past it" which makes me think I didn't have a good seal and it wasn't working properly. anyway - how can I readjust to fit?
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Permalink Reply by Mike on
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rock on, Sleep Tech123. However cynical your outlook may be, this comment is extremely informed, intelligent and authentic. I look forward to hearing much more from your perspective.
sleep tech123 said:First of all,
I have to agree that the sleep profession is more or less and embarrassment to science, but perhaps not more so than other medical fields. The problem is not so much the technology or knowledge base, it is the leadership and the US workforce which generally rewards skills in the human relations rather than in scientific inquiry. People that "get along," schmooze, and strategize in self-promotion whilst doing nothing to improve their clinical skill set are promoted and lead by example. Those who challenge precedence or try to raise the bar in the profession are punished/scorned for 'being difficult' or for expecting too much from sleep techs (that just do it for the paycheck). The field is getting more standardized, but there is a problem wherein the standards are being created by the old-school physicians and sleep techs that learned by imitation rather than cognition and have failed to adapt to the newer technologies (neither mastering the old ones). There is also an entrepreneurial spirit which has also corrupted the field since the beginnings of DME distribution and now we are starting to see it in the clinical practices of volume-driven corporate sleep labs. Additionally, we have a bunch of PCPs and Pulmonologists that were not formally cross-trained in sleep and don't really know what their are doing. Add to that Neurologists that don't really understand ventilation at the level of a pulmonologist and even Psychiatrists/Psychologists that know very little about western medicine in general. Since the industry is so generally adverse to progress and so determined to reek the maximum profit for the least amount of work and thought, the future of sleep medicine is bleak, despite it's very positive effect on the lives of people who don't breathe well during sleep. The reason for this positive effect is that even doing a "C-" job at fixing sleep disordered breathing is a vast improvement over doing nothing. This is another reason why incompetence thrives in our field--even by doing a poor job we are helping people. Medicare just OK'd home studies for diagnosis (because in lab studies, with clearly superior diagnostic and therapeutic potential, have negligible-to-negative cost-benefit when given the real world conditions of higher cost per study and incompetent sleep techs). That being said, when I hear patients complaining about healthcare, I have to ask myself if those same people are being hypocritical-- as most of the US workforce is a bunch of underachieving, uneducated fools-- that if (the patient) was working in sleep technology e/she might just as likely be underachieving, undereducated sleep techs or sleep docs that we know or otherwise hear complaints about... but I digress...
As far as Auto PAPs go, all brands have different algorithms, some work better at responding to obstructive apneas and some work better with hypopneas, snoring and upper airway resistance. Some are hopeless if you condition is primary central sleep apnea demonstrating negligible-moderate improvement with CPAP during attended sleep study. In general, Doctors prescribe APAP's incorrectly. Setting a pressure range of 5-20 for someone with a Malampati of 4, a BMI of 45, and AHI of 50 and a neck circumference of 21 inches WILL NEVER WORK. A Doctor could, however, use an estimate calculator to determine a reasonable minimum pressure and have the CPAP max wide open, or use the sleep test to determine a small range for autopap. In this scenario, autopaps are probably better than fixed CPAP as they would respond with some level of compensation for REM-related (or medication influenced) sleep disordered breathing and night to night variability while delivering a mean PAP value much lower than the pressure required to resolve all evidence of UAR exhibited during the attended sleep study.
I would say that narrow-range autopaps are probably superior to having a patient mess around with his/her own pressure. Find a good doctor that listens to what you say and can speak intelligently about the pro's and con's of adjusting pressure. If you find that your doctor ignores you or seems preoccupied with other things during your consult, tell your primary care physician and seek the opinion of another sleep professional.
sleepycarol said:What about the majority of patients that have incompetent DME's and doctors that don't care? Should we be penalized for tweaking our therapy on our own? Should we continue to endure inadequate treatment and the associated risks involved in that inadequate treatment?
Many of us agree that if you have a GOOD doctor that is active in your treatment, a competent DME that is caring and available -- then one should take advantage of those professionals for their treatment needs. We, also, agree that a sleep study gives a better overall view of what is going on. BUT there is a whole group of users that are swimming in the pool of inadequate DME's that outright do NOT care about our treatment and are in business for the almighty buck and doctors that are too busy or incompetent to care about our treatment. I am in this group. I choose to be proactive in my treatment and will continue to do so. I am in charge of my treatment and if things go bad -- I have only myself to blame. I have seen improvement in sleep apnea by being proactive and think that is a good thing. As far as auto paps go -- why are they so bad in your opinion? You have a whole lot of different options with that machine that is not available with just a cpap.
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Whew, I now regret posting that! Is there any way to delete it?
Anyway, there certainly are a lot of great people in the field as well. Those of us who are passionate about our field most certainly do what we do to the best of our abilities and immensely enjoy our roles in improving the lives of our patients--no matter how jaded we may have become with the progress of our fellow healthcare providers. I would encourage those who have difficulties with their treatment and their service to voice their difficulties until they are heard. Most all problems with PAP therapy can be resolved with conscious effort and communication.
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are sleeprxrxrxrx and sleep tech123 one and the same? also, why the sudden about face?
sleepxrxrxrx said:Whew, I now regret posting that! Is there any way to delete it?
Anyway, there certainly are a lot of great people in the field as well. Those of us who are passionate about our field most certainly do what we do to the best of our abilities and immensely enjoy our roles in improving the lives of our patients--no matter how jaded we may have become with the progress of our fellow healthcare providers. I would encourage those who have difficulties with their treatment and their service to voice their difficulties until they are heard. Most all problems with PAP therapy can be resolved with conscious effort and communication.
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Permalink Reply by Banyon on
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sleep tech123 said: “most of the US workforce is a bunch of underachieving, uneducated fools”
Well that tells me a lot about sleep tech123 and nothing about the workforce.
sleep tech123 said: “People that "get along," schmooze, and strategize in self-promotion whilst doing nothing to improve their clinical skill set are promoted and lead by example. Those who challenge precedence or try to raise the bar in the profession are punished/scorned for 'being difficult' or for expecting too much from sleep techs (that just do it for the paycheck).”
That tells me some more about sleeptech123. I have seen this attitude often and it can usually be attributed to two causes. The first is youthful exuberance and idealism combined with lack of experience. The second cause is laziness (maybe mixed with some bitterness): someone has the technical skills and wants to apply them without taking time to develop relationships.
In my long career I had some very technically strong subordinates who fit these catergories. I always tried to teach them to practice good politics, include others' points of view, and constantly work on relationships. I also encouraged them to schmooze and, in polite ways, let others know what they are having success with (which you call “strategize in self-promotion”). Some of them learned these lessons, some of them did not. One person in particular, who still stays in contact with me, was so bright, fast working, and fast learning as to be scary. But he nevered learned to use good politics and was very uncomfortable schmoozing. Over and over there were times I could have promoted him into management, but every time I discussed it with my management team and all agreed such a move would slow the organization down and put too much stress on the man.
Another comment on schmoozing, we once combined three divisions into one and moved to another city. We were having problems getting the three divisions to interact with each other. We discussed this with the management team and decided to put in a cafeteria and encourage the employees to schmooze (socialize) over lunch. It wasn’t the total answer but it definitely helped and we saw a good business benefit out of the interaction. Schmoozing is a good thing for people and businesses and their customers. Afterall, isn't this forum often about schmoozing?
sleep tech123 said: “There is also an entrepreneurial spirit which has also corrupted the field”
When time is available, I will happily take on this statement. It is just not correct and I can give you some idea about the inefficiencies in health care that are due to the lack of entrepreneurial spirit not the presence of this spirit as you claim. I can also show you three significant examples of the entrepreneurial spirit in segments of the health care industry where that spirit is driving innovation, efficiency and customer (patient) satisfaction to the highest levels.
Regards.
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I agree with Banyon. What you want are folks with "the complete package" -- that means strong technical skills, but also strong people skills. "Shmoozing" is necessary but not sufficient -- same as with strong technical skills.
And could not agree more that what we need is more entrepreneurial spirit in health care, not less.
Banyon said:sleep tech123 said: “most of the US workforce is a bunch of underachieving, uneducated fools”
Well that tells me a lot about sleep tech123 and nothing about the workforce. sleep tech123 said: “People that "get along," schmooze, and strategize in self-promotion whilst doing nothing to improve their clinical skill set are promoted and lead by example. Those who challenge precedence or try to raise the bar in the profession are punished/scorned for 'being difficult' or for expecting too much from sleep techs (that just do it for the paycheck).”
That tells me some more about sleeptech123. I have seen this attitude often and it can usually be attributed to two causes. The first is youthful exuberance and idealism combined with lack of experience. The second cause is laziness (maybe mixed with some bitterness): someone has the technical skills and wants to apply them without taking time to develop relationships.
In my long career I had some very technically strong subordinates who fit these catergories. I always tried to teach them to practice good politics, include others' points of view, and constantly work on relationships. I also encouraged them to schmooze and, in polite ways, let others know what they are having success with (which you call “strategize in self-promotion”). Some of them learned these lessons, some of them did not. One person in particular, who still stays in contact with me, was so bright, fast working, and fast learning as to be scary. But he nevered learned to use good politics and was very uncomfortable schmoozing. Over and over there were times I could have promoted him into management, but every time I discussed it with my management team and all agreed such a move would slow the organization down and put too much stress on the man.
Another comment on schmoozing, we once combined three divisions into one and moved to another city. We were having problems getting the three divisions to interact with each other. We discussed this with the management team and decided to put in a cafeteria and encourage the employees to schmooze (socialize) over lunch. It wasn’t the total answer but it definitely helped and we saw a good business benefit out of the interaction. Schmoozing is a good thing for people and businesses and their customers. Afterall, isn't this forum often about schmoozing?
sleep tech123 said: “There is also an entrepreneurial spirit which has also corrupted the field”
When time is available, I will happily take on this statement. It is just not correct and I can give you some idea about the inefficiencies in health care that are due to the lack of entrepreneurial spirit not the presence of this spirit as you claim. I can also show you three significant examples of the entrepreneurial spirit in segments of the health care industry where that spirit is driving innovation, efficiency and customer (patient) satisfaction to the highest levels.
Regards.
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Permalink Reply by 99 on
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there are other things to take into consideration
ownership
it you own the machine it is yours to do as you please and adjust if you want to
loans and rentals are a different thing where you should obey the laws of the the owner who may point to the laws of the land
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