Questions To Ask At A Support Group Meeting

[Slinky]

I've attended two of our local hospital's support group meetings. There is always a question and answer session, usually for the last half of the meeting. It quickly becomes apparent how many CPAP users know NOTHING about their equipment, etc. I was thinking of stirring the pot a bit with the following questions:

How many here know the brand and model of xPAP machine they have?
How many here know the type and name of the xPAP mask they are using?
How many here know what their xPAP pressure is?
How many masks did you take home and try before you found THE one mask that was comfortable and leak free?
How long have you been using this mask?
How many here feel they've gotten good service, advice and assistance from their DME supplier?
How many here have contacted their DME supplier and asked for advice and assistance with a problem?
Has your xPAP therapy been effective?
Are you waking refreshed each morning?

This hospital does have an affiliated visting nurse association that does supply DME and the two host this support group BUT the support group is open to ALL xPAP patients and the very first meeting I attended all the local DME suppliers had been invited to attend and bring some examples of the equipment they offer and to visit w/the patients attending the meeting and discuss their services, equipment and any other questions.

It was interesting that the ONLY fully data capable CPAP displayed at this meeting was brought by the district Respironics dealer! All of the DME suppliers chose to bring bottom of the line, bare-bones, compliance data only CPAPs, mostly the lesser known brands, altho it may be that it was coordinated so that there wasn't a duplication of xPAPs presented.

Anybody have any further suggestions for questions?]

[papdaddy]

I would point out that the DME machines are the ones you don't want and point out the fully data capable machines are the ones you DO want. I would also ask the question, Do you know how much your DME is getting for that lousy non data capable machine I think that would stir the pot.

Rich

[Wulfman]

Some food for thought.....

Did you do any researching on the Internet about your condition(s) or the therapy (including available equipment and the options, support groups, etc) prior to having your sleep study or getting your equipment?

Do any of you belong to or frequent an online support group? (or know that they exist?)

Did anyone bother to tell you that there were fully data-capable machines with which to monitor your therapy? (and that they would cost exactly the same amount as the cheapest one....because your insurance pays a fixed amount)
Did anyone actually provide you with a fully data-capable machine? (that includes AHI, leak and snore detection)

Has anyone used or been given an "Auto" (auto-titrating) machine? (CPAP or Bi-PAP)

Did anyone have any problems navigating the Doctor/Insurance/DME minefield?

Has anybody purchased any equipment or supplies from online Internet suppliers?

Have any of you "done the math" to see how much this equipment is actually going to cost you (monthly payments, copays, deductibles, "new insurance year deductibles" for those with longer-term rent-to-own contracts)?

Do any of you that wear nasal masks KNOW whether you leak therapy air out your mouth when you sleep? Do you wake up with a dry mouth? Do you know how to prevent that?

Good luck, Slinky.

Den

[Slinky]

Thanks, Den and PapDaddy. I did say I wanted to "stir the pot" but I didn't mean I wanted to get the pot to boiling and get kicked out of the meeting!!!

At this point I just want to get the apnea patients THINKING! Hopefully, eventually we'll get them thinking for themselves. My impression of the staff running this support group is that they want to get the patients involved in their own therapy too. But since this support group is offered by our local hospital and their visiting nurse association some discretion is called for in openly criticising the local DMEs, especially since the visiting nurse assocation also provides DME.

[Wulfman]

Oh, Slinky......where's your sense of adventure?

(That's why I prefaced mine with "Food for thought")

I'm sure they have tables at those meetings with "hand-outs" (brochures) on them. Well, just make some of your own handout fliers.....lists with online forums and online sellers and sneak them onto those tables.

If they tried to kick you out of a meeting for that, it would be a freedom of speech violation. You could sue and make millions.

Den

[j.a.taylor]

Thanks, Den and PapDaddy. I did say I wanted to "stir the pot" but I didn't mean I wanted to get the pot to boiling and get kicked out of the meeting!!!

At this point I just want to get the apnea patients THINKING! Hopefully, eventually we'll get them thinking for themselves. My impression of the staff running this support group is that they want to get the patients involved in their own therapy too. But since this support group is offered by our local hospital and their visiting nurse association some discretion is called for in openly criticising the local DMEs, especially since the visiting nurse assocation also provides DME.

I'm sure they have tables at those meetings with "hand-outs" (brochures) on them. Well, just make some of your own handout fliers.....lists with online forums and online sellers and sneak them onto those tables. Shocked

If they tried to kick you out of a meeting for that, it would be a freedom of speech violation. You could sue and make millions. Smile

Slinky,

You mean you don't actually want to start a war, or get yourself permanently banned from meetings?

I like Den's idea. Become a spy. Surreptitiously place some of your own brochures into people's hands. Greet them on their way out, and say to them, "Hey, I have something for you, that might interest you."

All you'd really have to do is put cpap.com and the address of this post on the paper, and send them on their way. They'd see your questions, chat with the rest of us, and I can guarantee that we'd corrupt them for sure. We'd be willing to give them all the information they need.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, DME

[Mile High Sleeper]

Slinky, great list of questions. I hope you make it your mission to stir the pot during the Q&A part of the meetings. I can identify, same situation when I attend a hospital lab's AWAKE group meetings. Most of the CPAPers have no clue and most of the presenters are very discreet, avoiding useful but controversial issues. I always mention cpaptalk.com at these meetings, in the context of responding to a questions or issue, and people are very interested in the link.

Would you consider putting the questions, and those posed by others in this thread, in an article for the light bulb/our collective wisdom? That way, they won't get lost in a thread, and other cpapers could use them at their support group meetings.

Would you consider being a presenter at a meeting? There is already one meeting design in the light bulb. Stay tuned, because I'm creating another, one that addresses many of the questions you raised.

Let's face it. We cpaptalk.com regulars know a lot about the therapy. Most patients don't. We can give back to the cpap community by contributing to meetings and/or presenting. The group where I presented wanted a patient's viewpoint. I was certainly able to do that!

[Slinky]

I like the idea of printing my own flyers w/these questions AND the links to cpaptalk.com!!!!

This support groups staff wouldn't take offense to that at all, I'm sure. And if they did ... no great loss, then they aren't as open-minded as I've guaged them to be.

... Would you consider putting the questions, and those posed by others in this thread, in an article for the light bulb/our collective wisdom? That way, they won't get lost in a thread, and other cpapers could use them at their support group meetings.

Would you consider being a presenter at a meeting? There is already one meeting design in the light bulb. Stay tuned, because I'm creating another, one that addresses many of the questions you raised.

Thank you, MHS, you certainly are welcome to post them for the LightBulb. I'm am NOT a public speaker! My mind goes blank in front of a crowd even w/notes in my hands. I doubt even a teleprompter would help. My mind would probably freeze and forget how to read!!!

However, you are more than welcome to utilize any of my ideas, questions or suggestions and I'd like to be able to borrow some you've come up with to present as flyers at our group meetings.

[Kiralynx]

Bumping this thread because I may be attending a local AWAKE group next Thursday, and would certainly like to stir the pot myself.

[eutychus]

Thanks, Den and PapDaddy. I did say I wanted to "stir the pot" but I didn't mean I wanted to get the pot to boiling and get kicked out of the meeting!!!

At this point I just want to get the apnea patients THINKING! Hopefully, eventually we'll get them thinking for themselves. My impression of the staff running this support group is that they want to get the patients involved in their own therapy too. But since this support group is offered by our local hospital and their visiting nurse association some discretion is called for in openly criticising the local DMEs, especially since the visiting nurse assocation also provides DME.

And... I have no reason to criticize my DME (Sheldon Medical). They've been awesome! It helps that I have good insurance, but the first machine they offered me was my M Series PRO (w/ full data).

Slinky, I like your thinking. I have a couple of people in my church who've been cpappin' for years and don't know anything about their therapy. To their credit, they faithfully suit-up each night, but I get the impression that their main victory is that they don't bother their wives with their snoring anymore. In other words, they're unaware of how much of their health can be attributed to OSA, which means they're unaware of how much they can help their health by making sure their therapy is doing what it's supposed to be doing.

[Slinky]

Bert, I have a son-in-law w/no interest and has been on CPAP for 5-6 years or so. And a hubby who should but won't even go in for a sleep evaluation or even consider a home sleep test like ApneaLink. *sigh*

[Wulfman]

Hey, Slinky......

Whatever happened with this (meeting)? I just noticed that this thread was over two years old.


Den

[Slinky]

Nah, its only 15 months old. Wha' hoppen is there was a holiday break and no meeting until Jan 08 and I missed that due to weather, in fact I missed 2 meetings and frankly, forgot about this. I' m glad you resurrected it. I'll make up a flyer for the February 09 meeting!!!

[Kiralynx]

Nah, its only 15 months old. Wha' hoppen is there was a holiday break and no meeting until Jan 08 and I missed that due to weather, in fact I missed 2 meetings and frankly, forgot about this. I' m glad you resurrected it. I'll make up a flyer for the February 09 meeting!!!

Well, as I said when I bumped it, I may be attending a meeting this Thursday. I was thinking of doing up some flyers, but if you already have something organized, I see no reason to reinvent the wheel.

The organizer I spoke with was very nice, so I don't want to stir the pot TOO hard at the first meeting I go to! OTOH, I'd hate to see people not getting the therapy they should!

[Slinky]

Hey, kiralynx, go for it! Our next meeting isn't until February and obviously we are different support groups anyway. People need educating no matter what part of the country or state they are in.