UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

[asleep@thewheel]

I will be joining the American Sleep Apnea Association  Aug-27--Sept-1  in Rome this summer for the Tenth World Sleep Apnea Congress. http://www.wcsa2012.com/

 We are tasked with organizing all the participating patient advocates from around the world.  

Our agenda includes holding the first-ever meeting to draft a universal sleep apnea patient bill of rights as well as opening all lines of communication among each country/organization.   I'm interested to hear your thoughts and am open to discussing all rational and intelligent suggestions in order to broaden global awareness of sleep apnea.

So please begin an open discussion about what is most important to the cpaptalk.com forum If this is of interest to you.

Thank you,

asleep at the wheel, living with sleep apnea
@sleepapneabook

[chunkyfrog]

What did they do the previous 9 years?
It might be nice to be thought of as people, not as golden geese to be led to slaughter.

[Janknitz]

I'm not sure how this would apply in other countries with socialized medicine, but in the U.S. I think we desparately need the following:

The right to be given a copy of our prescription, to be informed by our insurer of exactly how CPAP equipment and supplies are covered by our insurers, and to be informed that we have a right to choose any DME or supplier we wish.

In our non-socialized medical system, the above is crucial.

[asleep@thewheel]

Noted, they meet once every three years. Keep those ideas coming. Great Start.

Thank you

[chunkyfrog]

TRUTHFUL information about diagnosis and all treatment alternatives-with actual (not doctored) statistics.
Affordable (and effective) treatment).
Consider the sleep deprived to be potential scam victims, and permit them legal recourse against fraud.

[BlackSpinner]

Proper support and training and followup.

10 minutes is not enough.

Proper mask fitting.

Referrals for effective affordable therapy if there are psychological issues.

[bailachel]

The universal right to use CPAP equipment while traveling on planes, trains, ships, etc. if travel is over X hours. 6 hrs?

[the_nap_ster]

I'd like patients to be told, at diagnosis, that there are data-capable machines and software available for them to monitor their therapy at home, if they choose to do so. So many of my friends and family who have been diagnosed didn't even know this was an option.

I'd like it to be required that all patients be told, at the time of diagnosis, that they have a CHOICE of equipment, and it is their right to consider the pros and cons of different models.

I'd like mask fitting to be taken more seriously, with patients told to expect that the first mask might not work and offered alternatives until a successful mask is found. I wonder how much this "here's a mask, live with it" approach is behind the horrific XPAP compliance numbers. I have tried over 10 masks so far. 9 of them have been self-purchased because it is such a nightmare getting masks from Apria (my insurance company's "preferred" DME).

Speaking of: there should be some standardization of Rx writing for equipment, and how DMEs are allowed to interpret the language of Rx's. My Rx says "nasal pillows". My DME will not let me order Bella Loops on this Rx, claiming that "Bella Loops" are somehow different than "nasal pillows." Lovely. They try to force me to get a new Rx stating the exact model name of any mask I want to try. This costs me both time and money in additional doctor's visits. I refuse to negotiate with terrorists, so I buy through cpap.com. If a pharmacy was monkeying around with my Rx medications in the same way, they'd be shut down.

[asleep@thewheel]

Keep them coming. Some really interesting and detailed suggestions covering a wide range of topics.
It's amazing that my wifi connection worked better at 30,000 feet this afternoon when I posted this originally compared to the terrible connection I have off of the coast of Maine. With everyone's permission I will start to compile a list to begin formatting this into an easy to read/translate and explainable set of parameters for the global medical community to follow.

We have until late August but it would be great to really work at this through July and get it very refined and tight to take over to Europe.

Thank you and sleep well.

[kaiasgram]

Diagnostic and treatment services in earnest for RES patients.

[zoocrewphoto]

I definitely second those that mention the patients be informed of their ability to choose a machine with data capability.

Every person starting xpap (as well as those who already started but never got this) should be getting some real education about their sleep study study, how important it is, real help in getting started and being successful.

I am very fortunate to have found this forum. I know I am luckier than most because my sleep study was good, and my sleep doctor is good. My mom had both a bad study and a bad doctor. She uses her machine, but she doesn't have the same success. I can see why a lot of people never master therapy compliance. It would benefit the insurance companies if patients actually used their treatment on a regular basis since they would improve their health rather than progress to heart attacks, strokes, etc. And it would certainly benefit the patients.

Currently, success seems to be more about luck in finding the right sleep study, doctor, and DME. And a bit of luck mixed with curiosity as those of us who found this forum probably found it by accident when looking for something cpap related. I believe my doctor may start recommending it as he asked when I learned to get my data so that he could tell other patients.

[49er]

Code: Select all

I'd like mask fitting to be taken more seriously, with patients told to expect that the first mask might not work and offered alternatives until a successful mask is found. I wonder how much this "here's a mask, live with it" approach is behind the horrific XPAP compliance numbers. I have tried over 10 masks so far. 9 of them have been self-purchased because it is such a nightmare getting masks from Apria (my insurance company's "preferred" DME)

.

I totally second this. Due to not having insurance, I used the mask fitting service that the first sleep center offered and essentially felt that was their attitude. When I went back to try out nasal pillow masks, the guy seemed irritated because I guess he thought he was done helping me. He obviously had not gotten the word that people may need several masks to try before they find one that works.

Speaking of: there should be some standardization of Rx writing for equipment, and how DMEs are allowed to interpret the language of Rx's. My Rx says "nasal pillows". My DME will not let me order Bella Loops on this Rx, claiming that "Bella Loops" are somehow different than "nasal pillows." Lovely. They try to force me to get a new Rx stating the exact model name of any mask I want to try. This costs me both time and money in additional doctor's visits. I refuse to negotiate with terrorists, so I buy through cpap.com. If a pharmacy was monkeying around with my Rx medications in the same way, they'd be shut down.

On related note, the sleep tech who acted irritated that I took so much of his time, insisted on writing a specific prescription for my file. At the time, I was too tired to get this straightened out.

Fortunately, I finally got a generic one from my current sleep doctor so I am all set.

Sorry you went through that crap with your DME.

49er

[Chikorita]

I would like people all over the world to be able to purchase the same equipment at the same price. I believe in Australia there is price fixing and a ban on shipping from the US which means we pay much more for the same machines. And I seem to remember that the machines are actually made here so it is not a shipping price.

[archangle]

1) Always be dispensed fully data capable machines, including airflow waveform data. NO compliance only machines.

This makes a lot of sense for the provider, not just the patient.

Treating an apnea patient without apnea data and airflow waveform data is like treating a heart patient without using an EKG.

It may not be as definitive as an inlab PSG, but it will often give you a lot of useful information. Especially important is that it tells you what happened in the patient's normal sleep conditions and what happened for several days or months in the past. Patients often don't sleep well in the lab. A full data machine will let you actually help the patient who says "I woke up panting and sweating Thursday night at 2 AM." It will tell you he has leak problems in the middle of the night.

With modern CPAP machines, a fully data capable machine costs little more than a compliance only machine. With insurance, It usually costs the patients nothing extra.

2) No Full Face Masks unless the patient has problems with nasal masks. They leak more and can make apnea worse because they can push the jaw back.

[SleepDepraved2]

To be told at the sleep lab after the first study says you have sleep apnea that it is in your best interest to find a good sleep doctor and make an appointment to be seen before you go for the second study if you were referred by someone other than a sleep doctor. My primary care doctor referred me. Then when I got my machine, I spent the first night having aerophagia. I found out the hard way that the DME will not change the settings on my machine without a prescription and my primary care doctor wouldn't give me one because he didn't know enough about it. When I called the pulmonology practice associated with the sleep clinic, I was told I was not their patient and they could not prescribe new settings for my machine unless I was, so I made an appointment.

When I was given my machine, I didn't know how to get into the clinician menu. Thanks to CPAPtalk, now I do, but I still want someone who knows what they are doing to oversee my therapy, even if I end up going rogue and changing my own settings. I get to see the sleep doctor today. I've been using the machine regardless of the aerophagia for 5 days now and looking forward to getting a setting that doesn't have me having to deflate myself in the morning or waking up about once an hour to burp.

I also think it would be a great idea to get some sort of sheet with your machine that explains how your body should respond at the best pressure for you and what sorts of problems you might have if it is not the best pressure. When I started experiencing aerophagia, I was totally freaked out and got online at 2 AM to try to figure out what the heck was wrong as I didn't have this problem at the lab.

To be told that in case of power outages, you should arrange for some sort of battery back up for your unit so you can still use it. And to be able to access these kinds of options in an affordable manner. The battery for my machine is horribly expensive. I ended up buying the DC converter for it and will use my jump starter, which I wouldn't even have known about if it hadn't been for CPAPtalk! But for lower income folks, it doesn't seem fair that they have to suffer if the power goes out.