Respironics Users Group

[dsm]

<snip>
It seems as if you/we need at least three levels of participation in a users group-those with the technical knowledge of the equipment to communicate with the manufacturers, knowledgeable people with PR expertise, and the larger numbers of people like me who can provide the "weight" of our numbers in having leverage and in giving input about problems in using the equipment.
<snip>

Well said.

Later today (from 'down under' Sydney) I will try to do a summary of comments and ideas. I'll also try to comment on Johnny Goodman's post. (If it hadn't been for Johnny Goodman, we would not be here even thinking about this possibility).

I'll have a go at listing immediate goals, intermediate goals and long term possibilities.

To get the ball rolling Bill Ric & I have communicated & agreed to take on the role of steering committee to get a formal struxture in place.

In this day and age, that is the proper starting point - we are each donating $100 to a pool to fund the establishment of a group. Once money becomes involved we *have* to have a formal structure with proper accountability.

I will be keeping a log of all our correspondance (note that Ric & Bill - am suggesting you do to) as a historical record and for the record.

This fledgling idea may grow or it may wither, only time and effort will tell.

There is *no* doubt that we will need all types of skills Non-Technical and Technical etc: etc: etc:. During the steering committee phase we will put out requests for help in particular areas where it is needed.

In fact, do we have anyone who has really good design skills for a web site.

Lets assume we have a web site, what we want is a home page and theme. Nothing too fancy, just professional and welcoming and easy to navigate.

If anyone is able to help in this area please step forward. Obviously we will need to provide some guidance as we establish more details such as Mission & Goals of the org.

More later ...

DSM

[Offerocker]

DSM, Ric, Bill:

To get the ball rolling Bill Ric & I have communicated & agreed to take on the role of steering committee to get a formal struxture in place.

In this day and age, that is the proper starting point - we are each donating $100 to a pool to fund the establishment of a group. Once money becomes involved we *have* to have a formal structure with proper accountability.

T H A N K Y O U

I have not had the time to respond to notes I've taken, but until then...

What do you think of the idea of setting up an account on PayPal, for instance, in order that others may contribute monetarily. I am unable to be as generous as you have been, but can contribute now, and as I can. This information could simply be made within this thread, and anyone who wishes to contribute may do so. Also, it is another way of members to feel that they are PART of this effort - at least that's the way I feel about it. We pledge monies frequently (?) to causes, and I think THIS CAUSE is as close to home as any we'll commonly see. Repeat, voluntary, to anyone mis-reading my intentions. No expectations, no disappointments, (admittedly, there would be, although certainly NO regrets!) just an investment in a grand idea with immensely talented and generous people at the helm who have agreed to COMMIT to this project.

I'll post separate thoughts later. This deserves its own space.

Again, what a thrill it was to read those words -

communicated and agreed

. WOW. It's a reality.

P.S. Have you checked out the number of hits on this subject? Terrific!

[dsm]

Last night Bill Ric & I agreed to register the following names as one of our 1st steps.

CpapUsersGroup.org CpapUsersGroup.com
CpapuserGroup.org CpapUserGroup.com

This step has just been done so we now have a set of simple domain names.
We also have a temporary web home but will soon set up our own web site owned by the org.

We are proceeding with establishing a non-profit org in the US & will advise
when that is done (name will be advised once we have secured it).

When we have an auditable org in place we can look at the paypal suggestion (a great idea).

Again, where money becomes involved we must be squeaky clean & fully above board and fully open & auditable. So the org must come 1st - as part of the org will be Mission Statement & Goals. Once these are agreed upon in basic form (they may be altered by a fully operational org later), we can look at donations (people need to know clearly what the Mission & Goals are so there is no question of what the donations will go for.

I am not too keen to see a lot of money coming in as that brings its own problems & in these early days we just need to be on 4 wheels & rolling. The shape of the vehicle can evolve. We just need enough to take care of the basics.

Some ideas we can think of - once we have agreed Mission & Goals

1) Seek the blessing and support of complementary organisations (such as cpaptalk.com)

2) Seek the endorsement of the new orgfrom related orgs and yes even from the manufacturers (they have more to gain & protect by being pro-active than not, assuming they understand and accept our Mission & Goals)

3) At some future time (perhaps just before the steering committee hand over to a formal committee) seek to spread the news to any good online discussion groups

More later

DSM

[-SWS]

DSM, Ric, Bill--congratulations and thank you!

Once you get your PayPal link set up I'll be sure to shoot another hundred your way. I'm sure others will donate as well. History in the making.

[DSM-Guest]

Folks,

If anyone has recent skill at establishing a non-profit org using on-line facilities (to do the job quickly) please PM Bill (Nighthawkeye) directly & offer what advice / assistance you can.

Thanks

DSM

[krousseau]

No recent experience-in 1984 California was a good state to set up NP's in-fewer regs and fees. That was a long time ago-it may be different now.

[dsm]

<snip>

Later today (from 'down under' Sydney) I will try to do a summary of comments and ideas. I'll also try to comment on Johnny Goodman's post. (If it hadn't been for Johnny Goodman, we would not be here even thinking about this possibility).
<snip>

Got some of this done but ran out of time.

More later

DSM

[William Hartner]

What would be the goal of a users group, over what we have here? What more could be done to help users? Just a few questions. Jim

Today I phoned Respironics customer support to ask a basic question about my unit. I was told me to contact a distributor or Doctor. This is my third Respironics unit. I will not ever buy a Respironics unit in the future. I have no use for friendly useless customer support. Please forward this message to your Director or Marketing. Do not contact me. :

[Goofproof]

What, after 7 years still no user group. I have my user group, I use mine every night, I can read, here is my user group. Jim

[49er]

What would be the goal of a users group, over what we have here? What more could be done to help users? Just a few questions. Jim

Today I phoned Respironics customer support to ask a basic question about my unit. I was told me to contact a distributor or Doctor. This is my third Respironics unit. I will not ever buy a Respironics unit in the future. I have no use for friendly useless customer support. Please forward this message to your Director or Marketing. Do not contact me. :

That is pretty disheartening to hear. So much for encouraging adherence to pap therapy. And of course, if someone is uninsured and not aware of forums like this, they are royally screwed.

49er

[Wulfman...]

What would be the goal of a users group, over what we have here? What more could be done to help users? Just a few questions. Jim

Today I phoned Respironics customer support to ask a basic question about my unit. I was told me to contact a distributor or Doctor. This is my third Respironics unit. I will not ever buy a Respironics unit in the future. I have no use for friendly useless customer support. Please forward this message to your Director or Marketing. Do not contact me. :

That is pretty disheartening to hear. So much for encouraging adherence to pap therapy. And of course, if someone is uninsured and not aware of forums like this, they are royally screwed.

49er

Not really. There are too many "unknowns" about this particular situation to make a judgement. We don't know what the "basic question" was, we don't know how long this person has been a user, and we don't know how long of a period of time he had the three machines......was it many years or a very short time?. I've seen people post about what they thought were "problems" with their machines.......get another one (or more) from a DME.......and come to find out the "problem" was the user........they didn't understand how something was supposed to work.
From another point of view, there have been valid/real problems with machines that were not functioning properly. But, calling the manufacturer concerning a "basic question" is typically not the place to go.
The manufacturers don't consider us (the end users) to be the "customers". The doctors and DMEs are their "customers" and their customer service departments usually don't talk to the end users. As a general rule, NONE of the flow generator manufacturers will talk to the users directly. So, pitching a fit about this one in particular is pretty juvenile.

I should point out that about eight years ago, I DID manage to talk to one of the clinicians at Respironics to answer a question about the machines........my sleep doctor was adamant about the inaccuracy of the machines' reporting capabilities. He was very nice to answer my question and I appreciated that.
On another occasion (in 2007), I emailed ResMed with a suggestion about an improvement to the Ultra Mirage Full Face masks and received a reply stating they would pass it on to the appropriate parties.


Den

.

[DeadlySleep]

What would be the goal of a users group, over what we have here? What more could be done to help users? Just a few questions. Jim

Today I phoned Respironics customer support to ask a basic question about my unit. I was told me to contact a distributor or Doctor. This is my third Respironics unit. I will not ever buy a Respironics unit in the future. I have no use for friendly useless customer support. Please forward this message to your Director or Marketing. Do not contact me. :

You seem to be poorly informed. A manufacturer of medical equipment will not talk to patients because they know nothing about the details of your diagnosis and the treatment your doctor has prescribed. They could be easily accused of giving (bad) medical advice. This is not their role and they are not staffed to do it.

The manufacturer is correct. You should contact the DME who supplied the machine. Depending on what your question is, he may refer you to your doctor.

But really, if it is a basic question about your machine, you could get quick, accurate answers from this forum from volunteers who want to help.

Why not get rid of the stinking attitude and ask your question here?

[hyperlexis]

What would be the goal of a users group, over what we have here? What more could be done to help users? Just a few questions. Jim

Today I phoned Respironics customer support to ask a basic question about my unit. I was told me to contact a distributor or Doctor. This is my third Respironics unit. I will not ever buy a Respironics unit in the future. I have no use for friendly useless customer support. Please forward this message to your Director or Marketing. Do not contact me. :

You seem to be poorly informed. A manufacturer of medical equipment will not talk to patients because they know nothing about the details of your diagnosis and the treatment your doctor has prescribed. They could be easily accused of giving (bad) medical advice. This is not their role and they are not staffed to do it.

The manufacturer is correct. You should contact the DME who supplied the machine. Depending on what your question is, he may refer you to your doctor.

But really, if it is a basic question about your machine, you could get quick, accurate answers from this forum from volunteers who want to help.

Why not get rid of the stinking attitude and ask your question here?

It's not really this simple. The OP has a point. PR's phone system is abysmal. They do not want CPAP consumers calling. At all. Ever. Their system is a maze of digital phone extensions to prevent it. If you buy a Phillips electronic toothbrush, it's great, call away. Their operators would love to talk to you all the live long day. But an $800 CPAP? Go talk to your dumbass DME tech who cant fit a mask properly. I'm sure that will work fine....

The fact is some questions are far beyond the technical knowledge of the DME's who struggle with basic issues to begin with. I, for example, had a problem with my 560 recently when the optistart feature stopped working after the chip came back from the DME, even though the optistart feature was turned on. No way the DME would know how to deal with a technical glitch/bug issue like that. It took quite some time, but I did get a PR person on the phone. It should not have been nearly that difficult.

Basic issues like 'should I use distilled water?' are one thing. Online help blog answers are fine. But I am amazed how many technical issues/firmware bugs arise with these machines. PR should offer better support as such. I wouldn't be so hard on the op as a result.

[NachtWürger]

But I am amazed how many technical issues/firmware bugs arise with these machines.

Really?

I don't see them and I read about very few in the forums.

What are you encountering?

[chunkyfrog]

Since this forum already serves the function in question, the point is moot.
Nobody really gives a dump but the moron who just voted, thus cluttering up the main page.
Please GO AWAY!