UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

BACK UP POWER SOLUTIONS NEED TO BE GIVEN IN EASY TO USE DIRECTIONS for home or on the go.

Being an engineer should not be required especially since we are dealing with sleep deprived minds at work.

I believe some of the power companies let you register your home as priority to get power back on the grid in case of emergency.

Automatic generators should become standard operating accessories to apartment condo buildings.

No longer asleep at the wheel.

A Bill of Rights, by definition, is what a person can reasonably expect in terms of treatment, accessibility and fair and equal treatment

  A lot of the entries are gripes, others were fine-tuning issues, and others were just venting which is all fine but we need to set the parameters of the Bill of Rights itself.

I will try by the end of today or tomorrow to post a compiled summary list of what I cut and pasted out of this dialogue so far.

Thank you for your participation.

Dr. Aaron Morse, a sleep medicine physician, said in the podcast that Jankowitz provided a link to, "Failure to adapt to Cpap treatment is not a character flaw".

As one who feels I was made to feel that way by my first sleep physician, personally, I think this should be at the top of the bill of rights so that when patients have difficulties, they can look at this as an important reminder.

49er

chunkyfrog wrote: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.

This sould be true for ANYONE with ANY condition. I'm sure that there are as many or even more crooks out there for medical condition treatments as there are medical conditions...

Probably not within the scope of the association, yet being 'a newbie' in the hose community I think the establishment of Peer Support groups in communities across the country would be a fine idea. Seems to have worked well with AA, NA, and CA. (that's sarcasm by the way, these programs have enjoyed great success). Support groups always improve the rate of success.

FOR REFERENCE- I know we aren't comparing apples to apples.....

the right of petition

an independent judiciary (the Sovereign was forbidden to establish his own courts or to act as a judge himself)

freedom from taxation by royal (executive) prerogative, without agreement by Parliament (legislators)

freedom from a peace-time standing army

freedom [for Protestants] to bear arms for their defence, as allowed by law

freedom to elect members of Parliament without interference from the Sovereign

freedom of speech in Parliament

freedom from cruel and unusual punishments and excessive bail

freedom from fines and forfeitures without trial.

Patient's Bill of Rights

Provides Coverage to Americans with Pre-existing Conditions: You may be eligible for health coverage under the Pre-Existing Condition Insurance Plan.

Protects Your Choice of Doctors: Choose the primary care doctor you want from your plan’s network.

Keeps Young Adults Covered: If you are under 26, you may be eligible to be covered under your parent’s health plan.

Ends Lifetime Limits on Coverage: Lifetime limits on most benefits are banned for all new health insurance plans.

Ends Pre-Existing Condition Exclusions for Children: Health plans can no longer limit or deny benefits to children under 19 due to a pre-existing condition.

Ends Arbitrary Withdrawals of Insurance Coverage: Insurers can no longer cancel your coverage just because you made an honest mistake.

Reviews Premium Increases: Insurance companies must now publicly justify any unreasonable rate hikes.

Helps You Get the Most from Your Premium Dollars: Your premium dollars must be spent primarily on health care – not administrative costs.

Restricts Annual Dollar Limits on Coverage: Annual limits on your health benefits will be phased out by 2014.

Removes Insurance Company Barriers to Emergency Services: You can seek emergency care at a hospital outside of your health plan’s network.

Since the Patient’s Bill of Rights was enacted, the Affordable Care Act has provided additional rights and protections.

The health care law:

Covers Preventive Care at No Cost to You: You may be eligible for recommended preventive health services. No copayment.
Guarantees Your Right to Appeal:

chunkyfrog wrote:Maybe this sounds picky; but feet vary as much as faces;
yet the sizes available in masks is a FRACTION of that for shoes!
Where does it say that 'sort of fits' is close enough?
We need more sizes--half sizes, width, depth variations, etc.
Shoes are much less costly, and they make a dozen sizes --easy!

I'd also add that you should be pre-fitted for or at least shown each of the different styles of mask before your titration study. I was originally fitted for a FFM because I'm a mouth breather with chronically clogged sinuses. Hybrids weren't even discussed.

There also needs to be a template for universal headgear connections (locations & either strap or clip sizes). My first mask (Mirage Quattro, size medium) fit "well enough" for the first 6 weeks, but the headgear put direct pressure on my already misaligned C1 vertebra and made me lose sensation in my fingers.

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 asleep@thewheel!

There are a few things on my heart:

We need better care:

1. In testing. Currently the polysomnogram is considered the “gold standard” even though it is in the lab rather than the home, very cumbersome, and too expensive to be applied with the kind of regularity required to map a persons night to night, week to week, month to month, season to season, year to year, and decade to decade variabilities. We need in home tests using something like the Ibrain for brain data, auditory analysis of breathing sound for flow data, and easily applied sensors for the rest so that full polysomnography can be done in the home, unassisted, and several times a year if the PAP data says so.
2. In treatment. We need constant gathering and analysis of our PAP data. A body of software needs to be created to gather, analyze, and if necessary intervene if the PAP data indicates a problem. The data in full forms needs to be constantly available to the patient, and education regarding it's full use needs to be readily available. If a person has high blood pressure we ask him to take it regularly, if a person has high blood sugar the same. So use of PAP, which has great variability depending upon lifestyle, needs to be something a patient can look at his own nighttime data several times a week to regulate lifestyle as to how it affects PAP therapy. This will help with motivation and with rapid response to the problems that will inevitably develop. We need full disclosure on data with the proper tools to analyze it. It is our data, and we need it now!
3. In professional relationship. There is too little respect and too great disrespect for patients with Obstructive Sleep Apnea. As well, there is too little effort on the part of the physicians to keep abreast of the current research and to understand the full effects of the disease and so that they can treat it properly. Too often I have taken a complaint to a sleep doctor and, rather than he making an effort to see the breathing instability in my data as well as the sleep fragmentation and circadian rhythm disorders he referred me to a psychiatrist. Frankly, he was crazy with laziness and prejudice. That needs to change.

All for now - still thinking about this!

Todzo

BasementDwellingGeek wrote:

1) Any patient who undergoes an in-lab sleep test should be provided with a CD containing a copy of the raw data at the end of the test AND a complete copy of the written report (including the summary graphs) as soon as it is available; at the latest this should be at the next follow-up appointment with the doc.

Wicked good idea! Not that many would benefit from the raw data, but those that could should have it.

As robbysue is also pointing out education needs to be a lot better! That way all would benafit from the disk which I think is her intention!

May we all move toward understanding!

Todzo

Always dispense a sleeping pill for the sleep study patient to be taken in case he can't sleep. Too many patients waste a night not sleeping for a test and go without treatment because of it.

Proper air controls for sleep test rooms. Usually, this will mean individual thermostats and individual air vent controls. Standard office style air conditioning doesn't work right with doors closed.

Quiet rooms for sleep studies. No sounds of other people coming in and out, no hospital intercoms. If they're jackhammering up the concrete on the next floor, shut down your sleep lab until it's usable again.

Reasonable start/stop times for tests. Apnea patients often don't sleep well anyway. Trying to get to sleep at 7 PM in the lab when you have trouble sleeping at home at 11 PM is not reasonable.

zoocrewphoto wrote:I knew I wanted a full face mask before I got there. I never would have gone to the sleep study had I not known of full face masks. And I would have refused if they insisted I try a nasal mask. I would have been unable to sleep, and in tears from being forced to try. It would have been a completely different experience had I been forced to try a nasal mask.

And the irony is that I knew there was no way, with my claustrophobia, that I could tolerate a full face mask. I would not have been able to sleep, and, as it was, I was in tears at the thought of having to use a horrible full face mask. Almost as bad was the idea of straps every where, cutting into my face. Fortunately, the mask specialist at the sleep center offered me the Comfortlite 2, which is one of two masks I can tolerate all night.

A variety of masks of different types should be offered.

Kiralynx wrote:

zoocrewphoto wrote:I knew I wanted a full face mask before I got there. I never would have gone to the sleep study had I not known of full face masks. And I would have refused if they insisted I try a nasal mask. I would have been unable to sleep, and in tears from being forced to try. It would have been a completely different experience had I been forced to try a nasal mask.

And the irony is that I knew there was no way, with my claustrophobia, that I could tolerate a full face mask. I would not have been able to sleep, and, as it was, I was in tears at the thought of having to use a horrible full face mask. Almost as bad was the idea of straps every where, cutting into my face. Fortunately, the mask specialist at the sleep center offered me the Comfortlite 2, which is one of two masks I can tolerate all night.

A variety of masks of different types should be offered.

Exactly. They should have at least a few versions (in multiple sizes) of each type of mask (nasal, pillows, full face, total, etc). And ideally, they should have a display of the different models and let the patient look at all of them and decide what they would like to try. I'll bet most people can immediately dismiss several models that they know won't work for them, and most people could probably pick them best model for themselves from the available choices if they could simply look at them, pick them up, and examine them. We know what we like, and what bothers us.

I was lucky. My sleep tech asked about my general preference and then selected the perfect mask for me. But I'm sure that is rare.

Todzo wrote:

BasementDwellingGeek wrote:

1) Any patient who undergoes an in-lab sleep test should be provided with a CD containing a copy of the raw data at the end of the test AND a complete copy of the written report (including the summary graphs) as soon as it is available; at the latest this should be at the next follow-up appointment with the doc.

Wicked good idea! Not that many would benefit from the raw data, but those that could should have it.

As robbysue is also pointing out education needs to be a lot better! That way all would benafit from the disk which I think is her intention!

Exactly what I meant!

http://www.sleepguide.com/profiles/blog ... ts-version

From our friends at Sleepguide a few years back in their attempt a a Bill of Rights.

Still compiling info.

Thank you for the new comments.

Asleep at the wheel.