Rant

[alnhwrd]

Now I don’t want to get off on a rant here, BUT

When my wife went to the foot Dr for chronic foot pain, he took a mold of her feet which was used to make an insert that went into her shoes to correct the problem she had with her feet. There was no expectation that she would just use the most popular insert or the one the guy before her was given. She was not expected to trim it down or add material to it to make it work. The same thing is true of hearing aids. You are not expected to take one off the shelf with a slight nod to sizing of picking a small, petite, shallow or wide one. They are molded to fit the individual’s ear. When I had a crown put in, the Dentist didn’t just look at my mouth, decide my teeth were a certain size, pull a crown off the shelf , glue it in place, slap me on the back and send me out the door cured! No, they took molds of my teeth and jaw, formed the crown from those molds, then when the dentist put it in he spent almost half an hour slowly grinding it down so that it fit with my existing teeth. Who would ever go back to an optometrist who had just a couple of dozen different prescription lens and frames and yet believed that he was fulfilling his customer’s needs by getting that customer to go home with what the optometrist thought would be best for the customer?

If all this seems absurd, they why, oh why, does the “sleep medicine” industry do business in this exact manner? From reading this forum and from my own experience, it seems that EVERYONE has to try multiple masks/interfaces, and often must make adjustments, fixes and modifications on them to get them to work. There are even “Lab Rat Awards” for those who come up with the most ingenious modifications to existing equipment. And I have read from several posts that people have 5, 10 15 or more masks, and that lots of people are eagerly awaiting new interfaces/masks etc. and trying new fixes all the time in search of that perfect fit. Again, who would expect to walk into an eye doctor and leave with a set of glasses that was hopefully close to your prescription and instructions to try them out for a week or two and bring them back in a couple of weeks if they didn’t work out? Who in their right mind would go back to the SAME doctor and buy a couple more sets of lens and frames every few months in the hopes of finding the right one? And yet it seems to be the norm in obtaining equipment to treat sleep apnea,.

Don’t get me wrong. I think the awards are well deserved and the people on this site who come up new fixes and alterations are obviously thoughtful and intelligent and resourceful. And the people who stick with it, learning new fixes and buying new equipment, often out of their own pocket until they get what really works for them are an inspiration to all. But my question, and hopefully yours too is this:

WHY IS EQUIPMENT ESSENTIAL TO THE TREATMENT OF A HARMFUL AND LIFE THREATENING MEDICAL CONDITION NOT TAILORED TO THE SPECIFIC NEEDS OF THE PATIENT/CUSTOMER TO INSURE A DELIVERY OF TREATMENT THAT MEETS WIDESPREAD AND ACCEPTED MEDICAL STANDARDS OF CARE?

If they tailor equipment for specific patients’ feet, ears, eyes, and lots of other examples I could name, why not make masks, pillows, CPAPSs, etc to fit the individual s needs to most effectively treat sleep apnea? Yes, we can make changes to the masks we are given to make them work, BUT WHY DO WE HAVE TO? I can have the car, the shoes, the clothes, the education, I need and want. So why am I expected to accept a product that may or may not work the way it is supposed to? Is it just me or does this seem inherently wrong to anyone else?

Three obvious answers come to mind.

1. Profit. Some one is making money, probably lots of it, with the current system, therefore any change is resisted to keep the dollars coming in.

2. Inertia. Things are done the way they always have been done, and nothing really bad has happened, so why make changes? Remember the Seven Last Words of any organization are “We Never Did It That Way Before”!

3. Ignorance/Indifference. Those who are providing this medical service are not afflicted with this condition, so why should they care if their customers/patients are provided with service and equipment that is less than the accepted medical standard?

In a nod to our host, I must pay CPAP.com the compliment of saying that , from their can-do pro customer service attitude it seems like they are one of the ones who “gets it” and understands the basic business principle of listening to the customer and meeting a need that is unmet elsewhere, and I sincerely hope they prosper as a result of it, as well they should. But it points up the terrible malaise in our health care system even more when a business shows more concern for its customer than medical care providers do for their patients.

No rant is complete without a suggestion or for fixing the problem. Here are mine:

Each patient should be given a TEMPORARY mask for use while a permanent mask, designed and molded for the individual patient’s face/nose/nares is made.

Every cpap, apap, bi-pap etc should be readily data accessible by the patient and, within limits set by the Dr, the patient should be allowed to set the machine himself. Each machine should provide at least AHI, AI, HI, Pressure, Leak rate, flow limitations, snore index and oximetery. Ideally, each machine should be capable of doing a “mini-sleep study” of the patient at least every six months.

Each patient should be given a list of potential problems, causes and fixes related to starting and using CPAP, with access to a help line and internet resources. This list should get shorter every year, BTW.

I’m sure there are more, and I leave it to the group of experts here, before whose knowledge and wisdom I humbly bow, to bring those forth, and thank each of you for listening, sharing and caring.

Thus endeth the Rant.

[GrizzlyBear]

Hiya.

I couldn't agree more. Even here in Australia, the situation seems the same. I suspect that at least a significant part of the problem is that what should be a medical 'service' has become an 'industry' - with the consequent focus on profits before consumer needs (or , at least, consumer needs as a subset of profits).

Here's some stuff I've put on another thread:

Hiya, Folks.

Here's a copy of a message I put on another thread. Perhaps it applies to more than just us. Perhaps the 'ripped off' need to get a bit more active to spread the word on those things we're being ripped off about.

I know I have a great GP (family doctor), and he would happily have passed on any information brochures that were available on sleep apnea and its treatment, but there just doesn't seem to be any independent body (at least in my country) which is making them available. At least a brochure directing us to an informative website would be a good start!!!!!

Anyway, here's my quote:

Hiya, Folks.

I'm new to this cpap stuff, but it
seems from my distance (Australia) that there are a lot of people in the US with our condition, many of whom are being serially and seriously ripped off by elements of the sleep 'industry'.

Like pilot_ron, I have benefited enormously from my short access to this forum and all you wonderful people. Unlike many of you, I didn't do enough research before I was ripped off by an Australian version of your DMEs. A spot of caveat emptor, I guess, but I am much better prepared for the future.

I was wondering, however, that there is so much brilliant advice on this forum, is it possible to try and get it out 'there', for access before people succumb to the sleep industry's blandishments? Is there an association of sleep apnea sufferers that could supply information brochures to family doctors (GPs, in my country), perhaps set up a website with information pages, and so on.

I would like to discuss this a little further, but I'm under instructions to take my kids for a yum cha, and then shopping - better go, or I'll get my bum kicked.

Regards,

Thoughtful GrizzlyBear

Isn't there someone out there savvy to the ways of the internet who could at least put together an informative website based on the fantastic information available on this site?

Regards,

GrizzlyBear

Just to let you know there are others who feel as you do!

Regards,

GrizzlyBear

[rwalther]

Now THAT was a "Quality Rant" ... if I've ever heard one.

I respect and admire your ability to articulate that which you find annoying.

For the sake of quality debate ... let me give you another perspective.

Regarding masks ... a "mold" that results in a customized face-fit is an interesting idea, but it would be really difficult to "operationalize" from a manufacturing standpoint. The costs would be so high as to be prohibitively expensive ... and conventional wisdom would say that "somewhere" in the gigantic diveristy of Mask-Land ... there's something that will fit you. Just like you, I applaud CPAP.com's attention to reviews, evalautions, and I have personally taken advantage of their "Choice Insurance" to make sure I got a mask that works. Bottom Line ... if you got what you wanted, the price would be so high that you'd figure out a way to buy off the shelf anyway.

Regarding machines ... I think that you "missed" with this one, at least with regard to the system that I bought. My M-Series, in combination with my software, came with the ability for me to change virtually every setting on the gadget. The normal user-config is limited, but they send it with the card that gives you the key sequence to enter the "Provider Menu", which allows changes to every setting you can imagine.

I'm a total rookie, but in three weeks, I've used the insurance to get the right mask, the smartcard and software to identify what worked and what didn't, and both the User and Provoider settings to adjust everything from A-Flex to C-Flex, changed Min and Max, adjusted Ramp pressure and time, and a bunch of other stuff. I'm still "tweaking" ... but I feel like I have (a) plenty of information, and (b) the ability to adjust anything I want.

Not trying to interrupt a perfectly good rant ... as there's a cleansing that comes from it. Just trying to say that my experiences don't match yours.

The glory of diversity is that men of good conscious and rightesou intent ... can disagree and remain friends.

Rusty

[GrizzlyBear]

Hiya

It looks like you've been really lucky.

Judging from this forum, lots have been much less lucky than you.

My story is that my Aussie version of your DME sold me a machine for over $2000 (not that much more than your dollar), and a mask for $125. Over a month's trial, this was the only machine I was given to try. In the mask line, I got sores with the 1st I tried - I was given absolutely no advice or assistance. I tried to get rid of the sores, tried nasal pillows (I had to INSIST) - again, got no advice. Finally, I settled on a third mask - I was told that these were the ONLY three options available to me. I was also told I HAD to have a machine with cflex - and the remstar was the only one that would do it.

I paid out my money (receiving a couple of hundred dollars back on my health insurance).

What a naive poor sod I was.

Feeling a bit ripped off, I started searching, discovered the numerous masks available, the machine ranges and so on. I'm happy with my machine - but I can only access the information and pressure variability because of illegal transactions - a pirate copy of the Encore Pro software, and information about how to access the 'secret' parts of the machine's controls.

And the mask!!!! I don't have endless amounts of money to spend. Masks etc are considerably more expensive in Australia than the US, the postage from the US is proving prohibitive, my insurance will pay for diddley squat. While it is true that I could use cpap.com's return insurance, that is an added cost, and I have all the postage charges on top that I do not get refunded. I have a family to support, and I have had months off work without pay, due to illness, over the last couple of years. I can't afford to keep experimenting.

Yet the sleep industry feels free to profit from my illness, without feeling any obvious need to provide an adequate service.

Urinated off. You betcha.

Regards,

Angry GrizzlyBear

[rwalther]

I can certainly understand your frustration.

Two questions:

(1) Do you live in the Sydney area?

(2) If the answer is "Yes", is there anything you'd like me to buy for your here at the cheaper prices and without shipping costs?

I have a speaking engagement in Sydney the third week in February, and would be happy to play "Delivery Boy" for you. Call it a random act of kindness.

URL for my conference bio is at:

http://www.servicestrategies.com/emails ... nters.html

I'm the only "Rusty" ... not too hard to find since I'm the Keynote Speaker for the event.

If you want to chat about it ... drop me a private EMail.

Happy to help you save a few bucks if I can.

Rusty

[rhowald]

Thats a good idea Grizzly. I imagine that a company making custom mask inserts that match your face (the entire mask wouldn't need to be custom, just an insert that touches the face) would probably make a pretty penny.

With regards to people that go to DMEs you are right on the money about the "Heres a machine, get out of here and dont come again till you are ready to spend more" mentality of many of them.

CPAP.COM has an excellent business model and I don't know why someone would go to a DME after being serviced by CPAP.COM. I buy all my stuff from them and just deal with the DME (who got me to pay for a $300 service plan because I was a brand newby who didnt know any better) for sizing of brand new masks, etc.

Good rant!!!

[track]

Whenever I complain my wife usually responds with something like, "we all have our crosses to bear". Food for thought.

[GrizzlyBear]

Hiya, Track.

It's true, we do all have our crosses to bear. For example, I've spent a LOT of time in hospital over the last few years. I've had 5 major abdominal operations, and 6 months with a colostomy bag. One of the things that has kept me going is knowing that however bad I feel, someone else is always a lot worse off. I may have been close to death several times, but other people are dead, or have far worse diseases and medical problems.

It's the same with sleep apnea, of course. But does this mean we have to put up with rubbish unnecessarily - do we just accept that there are scumbags out there ready to take advantage of our medical condition?

Not this little black duck!

The information I've gained from this forum and the great people who spend much of their time helping us newbies will enable me to take control of my illness - or, at least, its treatment. I only wish that information had been available for me from the start, so that some medical industry twerp wouldn't be able to take advantage of me.

This is not a criticism of the people on this forum (or, at least, it's not intended to be), but there must be ways for us to let our feelings and views known, and for providing newly diagnosed and soon-to-be diagnosed people with information - without having to wade through tens of thousands of webpages before finding a forum like this one.

Regards,

Rantabilliy GrizzlyBear (by the way, I can't take the credit for the original rant, it was a great bit of ranting from another person entirely)

[GrizzlyBear]

Hiya, Rusty.

Thanks for the offer (in fact, thankyou VERY much). I unfortunately live a very long way from Sydney - although us Melburnites would regard ourselves as usually being EXTREMELY lucky not to live anywhere near Sydney - sorry Sydneysiders (well, not really!!!!!!!).

Thanks again, Rusty. Great photo on the conference material, by the way - but I say that about any bloke with a beard!!!!!!

Grateful and Chastened GrizzlyBear

[track]

Hi Grizzlybear.....thanks for responding.

This forum is a Godsend for do it yourselfers like me. I would not be on cpap if not for this place..and that's a fact. There is a lot of moaning and complaining on this board but that's true in life in general for some people.... but it's a very small price to pay for all the great info that comes from those offering advice. I will always be appreciative to those who have responded to my questions and to other questions that have been posed on this board that are meaningful discussions on cpap treatment. Have a great day.

track........my rant for the day is....It's cold as hell out this morning.

[rwalther]

Actually ... the beard (15 year history) was sacrificed to the "Apnea-Gods" in search of a lower leak-rate.

It's gone. Now I feel like I have more "Chins" than a Chinese Phone Book.

Can't chat now.

Going to the gym to find the "Anti-Chin Nautilas Machine".

Blow Fish inflate to scare predators. Maybe if I figured out how to inflate my chin, it will make me a more formidable business negotiator.

Rusty

[billbolton]

I imagine that a company making custom mask inserts that match your face (the entire mask wouldn't need to be custom, just an insert that touches the face) would probably make a pretty penny.

Its not that more expensive (see http://www.sleepapneamasks.com.au/), but there is certainly a hassle factor in terms of fitting, waiting for the mask to be made, and doing it all again if your face changes because you gain/lose weight!

Cheers,

Bill

[Slinky]

Bill, is this the same mask maker we were discussing, checking out last year? Did they call the Anderson mask the Phantom? Just vague memories of it now 'cause an extended trip to Oz was kinda outta the question. Both the Logical and the Anderson fit the nares like nasal pillows? I thought, assuming these are the same I'm remembering, they ran about US $2000?? But, hey, my memory "ain't" what it used to be. The site mentions a cost of about a $1 per night (8 hours of sleep) which doesn't tell us a whole lot. $365? It says they last 3-5 years. $365 x 3? $365 x 5?

The Anderson/Phantom never interested me but the Logical (can't remember the name last year) did and does. Of course, unless I buy a Lotto ticket AND WIN, the trip and mask are out for me. *sigh*

So, let's see: a PB 420E, a Respironis A-Flex, a trip to Oz and a Logic - IF I buy a Lotto ticket - and win, of course. Hmmmmm. The trip to Oz sounds the most enticing!

[kteague]

On the subject of dealing with the physical ailments that plague so many of us, a good friend who at age 56 has in the past year had a bilateral mastectomy, and between the diabetes and what one course of chemo did to her, she now has heart failure and kidney failure (just started dialysis). She also has OSA. She is unable to drive and sometimes has to ride city buses to get to appointments, and that is miserable for one so ill. On a recent dialysis visit, she mentioned to the nurse that she must be real special for them to give her a private room every time. The nurse responded that it was because of her hepatitis B. No one had told her she has hepatitis.

So last week after taking two buses and traveling across town to see her oncologist due to new large lumps on her chest wall, the ocologist asked her how she was doing. Then came her classic response, "Doc, I'm on top of the dirt and the dirt's not on top of me!" She's such an inspiration.

Kathy

[GrizzlyBear]

"Doc, I'm on top of the dirt and the dirt's not on top of me!" She's such an inspiration

Wow, that's brilliant. I really try in my heart of hearts to take that approach - but it requires such bravery that I don't always make it (being a chronic depressive doesn't help either). I admire such people with all my heart.

Regards,

Touched GrizzlyBear