UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

asleep@thewheel wrote:Patient's Bill of Rights ...

All of that seems very US centric and as someone who left that system and had a great sense of relief when I found out I was fully covered for everything forever....

Your target is wrong.

The major companies are playing games for profit and J&J will buy out RM inside 2 years since the deal has already been made on a golf corse.

I can make cpap machines for $90 if I wasn't going to get sued.

We are all getting scammed.

I'll refer you back to:


Jim: Welcome of the opening day of the American Sleep Apnea Association games here in Rome . At our first event we have the favored Aussie team in the Resmed colors competing with the rising stars from Phillips. The odds are with the Kiwis to take 3rd place which is a fall from their 2nd place just 3 years ago. Now Bob, can you tell our audience more about this event?

Bob: Thanks. This event is about encouraging legislation to maintain a monopoly position from government buyers. This isn't just a sprint to the end, but an obstacle corse where each curve must be negotiated with the precision of a bobsled driver.

Jim: Well first off the line is Resmed with their limited country warrantee. What do you think about this Bob? Oh wait, did Puritan Bennett just drive over a cliff?

Bob: It looks like P&B is now jelly. The internet is causing Resmed to take a beating on this attack but they are still have the lead since they have taken shots at the DMEs who aren't even competing in this event.

Jim: You have to watch these events where anything goes. I didn't even know guns were allowed.

Bob: The events are "anything goes" and the only rule is to win!

Jim: Its an exciting thing now that it appears that Respironics have themselves a congress critter. We haven't seen such a blatant attempt to over take the leader here every before.

Bob: Jim, I think if you review the events at the last games, the politicians where always there just never thrust into the action like this poor sucker.

Jim: We need to break for a commercial now but we will get right back to the action and remember that tomorrow will be the finals for the condescending event where the best of the worst sleep doctors will be insulting patients for looking at doctor stuff! Don't miss it! That will be followed in the week with patent wars where one obvious idea can cost the end users millions while sidelining the other competitors for a few hours!

Commercial: Need to make sure you don't have any "user serviceable" bits? Sanp-craptic Plastics Inc can help you design plastic that goes together and never can be fixed but assembles like a toy!

EDUCATION
Patient education needs to be a number one priority.
Public education should not be far behind.
How many apnea sufferers never have a sleep test simply because they would rather DIE
than be "hooked up to a machine"--the treatment is grossly misrepresented (and grossly abused)
Better procedures need to be in place--everyone should have access to FITTING masks and data.
Public education should spread the news about good effective therapy and its results.

Some of the ideas overlap with the HIPAA patient's bill of rights, so here's a slightly paraphrased xPAP-centric copy. I'll try to get the other suggestions and feature wish-list up shortly.

Preamble:
Obstructive sleep apnea and complex sleep apnea are serious chronic medical conditions that require lifelong therapy. As with any chronic condition, it is in your best interest to fully understand the various treatment options for your condition. Almost certainly, your healthcare provider will provide Positive Airway Pressure (PAP) therapy at some point. There are many misconceptions and deliberate falsehoods about PAP therapy and what rights you have when selecting therapy device is best suited to you. The Health Information Privacy and Portability Act (HIPAA) ensures that you have certain rights regarding your therapy.

1. You have the right to receive accurate, easily understood information and, if required, assistance in making informed decisions about your equipment, Durable Medical Equipment provider (DME) and healthcare provider.
2. You have the right to a choice of DMEs that is sufficient to ensure access to appropriate high-quality health care.
3. You have the right and responsibility to fully participate in all decisions related to your therapy.
4. You have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances. This includes, but is not limited to: DMEs and their staff, Sleep Clinic staff, Sleep Physicians, and Primary-Care Physicians.
5. You have the right to communicate with health care providers in confidence and to have the confidentiality of their individually identifiable health care information protected.
6. You have the right to review and copy their own medical records and request amendments to their records. This includes the right to a copy of your prescription, your baseline sleep study results and your titration study results.
7. You have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

References: http://www.opm.gov/insure/archive/health/cbrr.htm

I am new to sleep apnea and cpap therapy but already I've seen things that need to be changed or at least discussed! First, there should be more sleep centers that accept non-insured patients. My doctor knew I had no insurance so she personally looked up sleep centers that accept non-insured patients. One, there is only one in my very large city!

I also think it should be a requirement to go over proper mask fitting and adjustment. My sleep tech didn't even tell me what good should feel like as opposed to bad! I ended up pulling my mask so tight that my nose would bleed! Then i ended up using "Doc google" to figure out how to fit my mask all because my tech never said a word!

Thirdly, I think the sleep center should inform on all types of treatments, not just cpap. I went into my studies knowing I would probably use cpap. I was never informed, talked to etc. on any other types of treatments available. The tech even came right out and said to me,"well when you get your cpap..." as if there are no other options!

I don't know if any of these are helpful but these are just my personal observations! It would really help us new patients to have information thats mandatory not just "if I get to that topic!"

asleep@thewheel wrote: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

Hi again aatw!

The more I think about this the more my heart is moved by the great need for a way to be made so that everyone on PAP has thier data constantly monitored in a way that will produce a response when problems are noted. I think this will require that hardware and software would be developed to automatically do this! I think we, as common people who need this treatment, need to push for this as our medical community - at least in the states - are not up to the task of seeing and dealing with our real need.

After monitoring my own data for a couple of years I now look in anger at the six years previous to these recent years and know that if I had been monitored I would have retained jobs I lost, relationships I had, and been of more service and value to my family. It is also apparent to me that those losses were and are unnecessary - a product of a medical community willfully unaware of the need to constantly monitor PAP efficacy even with the tools that exist and not willing to look at the current data my own CPAP now produces with any real regularity or diligence.

After reading thousands of posts on these Sleep Apnea forums I note that those who are successful with thier PAP therapy have taken the time and trouble to obtain, understand, and use the tools to daily or at least weekly monitor thier own PAP data. This is in spite of a medical and manufacturing enviornment which willfully frustrates the personal use of the patients own data (no analysis tools for minute volumes unless you use the Open Source produced software for example) and at the same time is available only once a year for consulatation "unless you are having a real big horrible problem".

I know from monitoring my own data that my AHI and breathing stability are the most important factors affecting my blood pressure and blood sugar!!! So why in the world does the medical community frustrate me from knowing these very important things. This is wrong, unhealty, and must change immediately!!

I hope I get better at expressing this!

Todzo

EDUCATION
Patient education needs to be a number one priority.
Public education should not be far behind.
How many apnea sufferers never have a sleep test simply because they would rather DIE
than be "hooked up to a machine"--the treatment is grossly misrepresented (and grossly abused)

I think primary care doctors would have a better chance of getting patients to consider a sleep study by having a cpap machine in their office with a few basic masks (that could be sterilized between uses). This way, people could see and feel what it is like to use a machine. I have been dreading one for years, but finally confessed that I have sleep apnea. My mom's machine was old and loud, and I knew I couldn't use the masks she had. At the sleep study, the tech fitted me and had me use the machine for about 5 minutes before going to bed so that it would not be a huge surprise in the middle of the night. I was completely surprised that this was what I had been afraid of. It felt fine, and didn't bother me at all.

The paperwork had stated that we should not ask the sleep tech for details of our data since they were not supposed to tell us their interpretation of the data. I did ask her if the machine had gone up in pressure during the night. She said yes, and I thought, cool. I didn't notice at all, so it didn't bother me.

Still Compiling all of our thoughts, ideas, and gripes into a coherent list that we can all vote and voice our opinion about before I head off to Rome at the end of this summer.

Obviously I know this is an an extremely uphill battle against the medical community, the insurance companies, the DME's, etc....but with that said if we don't try to do something about sleep apnea for ourselves, our families, our loved ones, our friends, and for that matter the rest of humanity, you might as well not put on your mask and get out of the game.

"Get Busy Living, or Get Busy Dying," Shawshank- Morgan Freeman.

Nothing will ever be perfect but we might as well work the problem and offer solutions instead of griping.

Thank you to all who have participated up to this point and I invite all of you who have watched from the sidelines to put your 2 cents in. All of those cents will add up in the long run to benefit the present and future afflicted sleep deprived patients.

No Longer Asleep at the (expletive) Wheel.

asleep@thewheel wrote:
Obviously I know this is an an extremely uphill battle against the medical community, the insurance companies, the DME's, etc....but with that said if we don't try to do something about sleep apnea for ourselves, our families, our loved ones, our friends, and for that matter the rest of humanity, you might as well not put on your mask and get out of the game.

Everyone I have known who was motivated to take care of their health has been successful with CPAP.

Unfortunately more are not motivated - "I won't wear a mask", "I won't sleep in a lab with wires hooked to me", "The mask is uncomfortable so I quit after half a night", "I got marks on my face and quit using it", "I sleep fine without it", "It's noisy", "No support from my spouse", and on and on.

Maybe a "Just do it" attitude is needed more than a bill of rights?

(Now 49er, before you have another conniption fit, I did not say "everyone", I said "everyone I have known".

ChicagoGranny wrote:

asleep@thewheel wrote:
Obviously I know this is an an extremely uphill battle against the medical community, the insurance companies, the DME's, etc....but with that said if we don't try to do something about sleep apnea for ourselves, our families, our loved ones, our friends, and for that matter the rest of humanity, you might as well not put on your mask and get out of the game.

Everyone I have known who was motivated to take care of their health has been successful with CPAP.

Unfortunately more are not motivated - "I won't wear a mask", "I won't sleep in a lab with wires hooked to me", "The mask is uncomfortable so I quit after half a night", "I got marks on my face and quit using it", "I sleep fine without it", "It's noisy", "No support from my spouse", and on and on.

Maybe a "Just do it" attitude is needed more than a bill of rights?

(Now 49er, before you have another conniption fit, I did not say "everyone", I said "everyone I have known".

ChicagoGranny,

How nice that sounds and how powerful you must now feel.

Those in the midst of dealing with OSA loose two very important things in the battle:

The executive function which allows them self monitoring, that is they have limited ability to see how they are doing. On a working day I would think myself fine - the clock would be my teacher as tasks were actually taking three times longer.

The exective functioning which allows problem solving, that is the ability to see the problem (see above) and form a plan to deal with it and do so.

Frankly, when you are dummed down by OSA you are fodder for abuse and there are many willing to abuse. In the medical community this comes out by thier forming ways which make money rather than heal disease, or by calling physiological issues "mental" and writing the person off.

The truth is that No Longer Asleep at the Wheel is right. Those needing to be or yet to be diagnosed or in the very badly managed and executed treatments for OSA absolutely need us to get off of our bottoms, away from our fluffy feeling pontification, and in thier service to see that they are actually helped rather than suffer as we have and do.

So please let us get to it!

Todzo

Well said Todzo!

Todzo wrote:

ChicagoGranny wrote:

asleep@thewheel wrote:
Obviously I know this is an an extremely uphill battle against the medical community, the insurance companies, the DME's, etc....but with that said if we don't try to do something about sleep apnea for ourselves, our families, our loved ones, our friends, and for that matter the rest of humanity, you might as well not put on your mask and get out of the game.

Everyone I have known who was motivated to take care of their health has been successful with CPAP.

Unfortunately more are not motivated - "I won't wear a mask", "I won't sleep in a lab with wires hooked to me", "The mask is uncomfortable so I quit after half a night", "I got marks on my face and quit using it", "I sleep fine without it", "It's noisy", "No support from my spouse", and on and on.

Maybe a "Just do it" attitude is needed more than a bill of rights?

(Now 49er, before you have another conniption fit, I did not say "everyone", I said "everyone I have known".

ChicagoGranny,

How nice that sounds and how powerful you must now feel.

Those in the midst of dealing with OSA loose two very important things in the battle:

The executive function which allows them self monitoring, that is they have limited ability to see how they are doing. On a working day I would think myself fine - the clock would be my teacher as tasks were actually taking three times longer.

The exective functioning which allows problem solving, that is the ability to see the problem (see above) and form a plan to deal with it and do so.

Frankly, when you are dummed down by OSA you are fodder for abuse and there are many willing to abuse. In the medical community this comes out by thier forming ways which make money rather than heal disease, or by calling physiological issues "mental" and writing the person off.

The truth is that No Longer Asleep at the Wheel is right. Those needing to be or yet to be diagnosed or in the very badly managed and executed treatments for OSA absolutely need us to get off of our bottoms, away from our fluffy feeling pontification, and in thier service to see that they are actually helped rather than suffer as we have and do.

So please let us get to it!

Todzo

Todzo,

As one who has had EF issues long before I was ever diagnosed with sleep apnea, I also wanted to praise you for a well done post. I was greatly applauding as I read what you wrote.

49er

Sorry about not getting the list together yet, but here's another idea to toss into the mix:

Here in North America (not just the US), hunting safety equipment makers have a voluntary certification program & logo called TMA. Part of the program requires them to include a training DVD with almost all of their products (portable tree stands, harnesses, semi-permanent platforms, etc...).

What about something similar for large-ticket items like masks, blowers, and humidifiers? Granted, there's nothing stopping the DME from removing the disk from the packaging, but it's better than nothing. Since most of the really bad DMEs are lazy anyway, they'd be the most likely to not remove the disk from the packaging. Remember the old AOL CDs?

Just skimming through a few posts this exercise sounds like it might have great value.

But permit me to say I learned a long time ago to be suspicious of lists laying out what others should do. That is what this mostly seems to be.

May I suggest that you take all of the items and turn them around so that patients would have a list of their responsibilities?

Ducking,

No need to duck.

You make a very interesting point. Why not do both?

Sleep2Die4 wrote:Just skimming through a few posts this exercise sounds like it might have great value.

But permit me to say I learned a long time ago to be suspicious of lists laying out what others should do. That is what this mostly seems to be.

May I suggest that you take all of the items and turn them around so that patients would have a list of their responsibilities?

Ducking,

Your basic point is excellent.

Well, I know that:

Controlling stress (I moved away from a hostile city to a small friendly city, and...)
Eating Right (50% veggies lots of protein good portion control, and...)
Taking Exercise (up to 80% of my 10K/day steps – joined health club for upper body and...)
Monitoring my therapy (SleepyHead and Encore – nighttime audio – pulse oximetery – and...)
Monitoring my body (weight, BP, Blood Sugar, Tetravex EF testing, state evaluation, and...)

Has resulted in a significant weight loss (at least three notches on my belt in the last three months) so now I have contacted the doctor knowing I need a pressure reduction to control breathing stability as I continue to loose weight and move toward more community involvement and health.

I ended up seeing a PA who scheduled me for an overnight titration. Now, I believe that an overnight titration has about a one in four chance of arriving at a useful setting owing to the “single shot in a strange, highly monitored environment, and wired up like a Christmas tree” nature of it. I know that twice the doctors in my former environment had the good sense to look at my CPAP data, which is taken in my home in my normal sleeping way and has hundreds of nights of data to work with, and decided to make pressure adjustments based upon that. I also know that taking up that bed and the money for an overnight study will keep someone else from one. So I canceled the overnight study and requested from them what I know has been and I believe should be done for my current situation.

My guess is that they will have a problem with that.

So perhaps we should indeed start a thread dealing with how to contact one's local medical boards and oversight organizations, one's city, state, and national government to move toward:

1. Assuring that people with OSA are diagnosed!!!!!!!
2. Assuring that people with OSA are treated with understanding and dignity.
3. Assuring that people with OSA are not taken advantage of in their need for medical care at a time when their problem solving abilities are compromised (vulnerable population indeed!).
4. Assuring that people with OSA are medically treated with the best care available.

Looking back at the crazy heavy personal losses undiagnosed and untreated Obstructive Sleep Apnea brought to me which should have been bypassed by basic good medical care I am shocked and angry. Looking back at how much better I would have done if my Obstructive Sleep Apnea had not been so under treated I am again shocked and angry. Considering the attitudes of those we deal with in the medical and medical equipment manufacturing communities – in keeping our data which we need now from us – and in being so slow to change methods and procedures which do not work I do now feel incited to take them to task using any legal, governmental, professional, or personal means I can find.

Thank you for helping me to move toward taking on my responsibilities to change what needs changing for the good of us all,

Todzo