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Ideal Patient Advocacy /Lobbying Group

I know we have the American Sleep Apnea Association, and believe me, they have a hard job and have done a lot of good on behalf of Sleep Apnea patients.  What I'd like to know is, irrespective of what the American Sleep Apnea Association is doing for patients, what should a patient advocacy/ lobbying group do on our behalf?

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Permalink Reply by Ernestine Webster on April 14, 2011 at 6:50pm

i cannot complain about my sleep tech. she worked with me during the first sleep study , letting me fall asleep on my side after seeing i could not fall asleep on my back she came into my room and turned me over on my back after i fell asleep. she also went over my sleep study report and explained it to me and showed me how to read it better. she made me feel as comfortable as possible and put me at ease. she said she could not tell me anything after my first sleep study except i needed to come back for another one with a cpap.

i had a good sleep tech    

Permalink Reply by RockRpsgt on April 14, 2011 at 8:08pm
As a tech I am in the same boat as most of you. I just happen to be on the otherside of the rules. I can't say that PAP has been as hard for me as some, but I am held to the same rules as most of you. I just took a sleep study. I was required to pay the same as everyone else. I was also not allowed to see  my study. Myself and most of the techs that participate here do it to help empower you as much as we can.  

j n k said:

Sleep docs I've spoken to don't seem bothered by patient empowerment, in my (albeit very limited) experience. Techs aren't even involved with it; they are testers, not treaters. So patient empowerment has nothing much to do with them. It is the RTs and DMEs who don't like patients messing with the machines, but as I understand it, that is mostly because they are afraid the doctor will hold them responsible for the machine settings that the patient might mess up.

 

99.9% of Rooster's statistics are made up on the spot. :-)
Rooster said:

99% of sleep professionals, including most of the ones who post here, are against patient empowerment .

Permalink Reply by RockRpsgt on April 14, 2011 at 11:29pm

That is heresay and personal opinion Rooster.

 

jnk you are the joker! ;) 

Rooster said:

99% of sleep professionals, including most of the ones who post here, are against patient empowerment .

Permalink Reply by RockRpsgt on April 14, 2011 at 11:53pm
Rooster is 100% against sleep proffessionals.

Rock said:

That is heresay and personal opinion Rooster.

 

jnk you are the joker! ;) 

Rooster said:

99% of sleep professionals, including most of the ones who post here, are against patient empowerment .

Permalink Reply by Charles McDermott on April 15, 2011 at 8:21am

Rock,

 

You said you were not able to see your sleep study?  That is your own personal medical record which you are allowed to see and by HIPAA allowed to request to have in your possession.

 

By the way, even if i am incorrect about having the record YOU CAN SEE IT!!

 

What do you mean by "Myself and most of the techs that participate here do it to help empower you as much as we can."  participate here?  do it? do what?  Confused by that sentence. 

 

 

 

Permalink Reply by RockRpsgt on April 15, 2011 at 4:54pm

I was able to see my reports. I meant that I was not allowed any special treatment because of what I do.

Permalink Reply by Ernestine Webster on April 16, 2011 at 8:53am
why are sleep techs not allowed to tell you anything ?  my sleep tech said she could not tell me i had sleep apnea and how bad it was , all she could tell me was i need to come back for another sleep study with a cpap and tritation. i did not know what i was looking at when i got my sleep study report. it seemed alittle overwhelmed at first      
Permalink Reply by Charles McDermott on April 16, 2011 at 10:05am

the techs are trained to hook you up to the monitoring equipment and perform the task necessary to produce those reports.  the doctor is trained to read the reports and prescribe treatment.

 

my understanding is that it is a two sep process.  the first study is to determine if you have sleep apnea and the second study is to monitor you while you are undergoing treatment to find the level of pressure you need.  

 

i found the process was great . who wouldn't when it saves your life WITH JUST AIR.

 

the only problem i see with the whole system is the (secrecy) that is put over it.  as i read somewhere, treating someone with air is almost non invasive and unlike the chemicals that are prescribe for some ailments, it cannot harm your body.  tweaking a cpap machine is not like tweaking medications so it is safe.  

Ernestine Webster said:

why are sleep techs not allowed to tell you anything ?  my sleep tech said she could not tell me i had sleep apnea and how bad it was , all she could tell me was i need to come back for another sleep study with a cpap and tritation. i did not know what i was looking at when i got my sleep study report. it seemed alittle overwhelmed at first      

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