Why Don't AWAKE Groups Work?

Ditto!


There are no support groups of this type in this area, so I've never been to any meetings. I hadn't even heard about AWAKE until I heard about it in these forums.

Den

Bill,

I don't want to suggest that what you are saying is wrong; I think you have a profound insight about the dynamics of health care professionals and patients; there obivously needs improvement there.

My limited experience with the health care industry by way of Kaiser Permanente HMO has, on the whole, been positive; but you have to be proactive and not fall into the mindset of "they will take care of me;" the midset should be "I will help them take care of me."

Apria, my DME, fit me in at the last minute when I didn't have an appointment and the folks that helped us set up our machines seemed to take the time necessary to make me feel comfortable with my setup.

My doctor's office faxed my prescription to them the same day I requested it and it seems that everyone was doing all they could to accomodate my desire for immediate therapy.

I realize that there are many folks without this experience and I don't in any way suggest their experience isn't true; just that as in most things, it isn't all good or all bad.

There is a lot of reform needed in health care, and with the retiring swell of the Baby Boomers (I am at the end of the "boom:), health care will change to accomodate the demands of their clients. It is places like this that empower people to be proactive in thier care, to seek out educational opportunities and be a participant in their own health care decisions.

One AWAKE chapter that seems to have a high degree of success is one located in New Jersey (go figure )....just kidding. The information the ASAA provided me to start my groups uses this group as a template. There are success, it seems, but these groups will obivously not meet the need for everyone.

I have to agree that the information available here is up to date, useful, beneficial, and much appreciated. I did attend one AWAKE meeting which appears to be only yearly in this area and it was nice to get the pressure checked on my Autopap. I don't think my DME would be pleased to check an Autopap that was purchased from cpap.man. The AWAKE meeting in this area is sponsored by a Sleep Center.

However, I would appreciate an answer to a question I asked Johnny. Unfortunately, I have not yet received a reply. I wonder if he is no longer interested in my business.

slumberer wrote: . . . the midset should be "I will help them take care of me."

Ummh . . ., I don't know, slumberer. I think that just perpetuates the image of exaltedness, and feeds into the existing mindset. Granted, it's better than the first alternative you stated. How about a mindset more like: "How much of this physician's time do I want to buy?", or "Where can I find the patient satisfaction survey ratings for this physician?" I think either of those is a much more useful mindset for a patient scheduling an appointment with a physician.

slumberer wrote:It is places like this that empower people to be proactive in thier care, to seek out educational opportunities and be a participant in their own health care decisions.

True

slumberer wrote:There is a lot of reform needed in health care, and with the retiring swell of the Baby Boomers (I am at the end of the "boom:), health care will change to accomodate the demands of their clients. It is places like this that empower people to be proactive in thier care, to seek out educational opportunities and be a participant in their own health care decisions.

I'm not nearly as optimistic as you about things changing in a calm and evolutionary fashion, slumberer. Instead, I believe that the change will be revolutionary and painful when it happens. I believe the forces in play cannot now be stopped, and will be both swift and convulsive in nature, much as they have been for some other industries recently. Most notable among these being the airline industry, where but a single carrier from among all the major airlines which conspired to operate as a "de facto" monopoly has managed to avoid bankruptcy, and the health of that carrier is now none too good. When reality overtakes lunacy, the results are often painful.

Good luck with the AWAKE chapter there, slumberer. With your attitude and your eyes wide open, hopefully you will be able to do well.

Regards,
Bill

I am involved with an entirely different organization, also a national non-profit, called Awake In America (see http://www.AwakeInAmerica.org/ for more info). We help individuals and labs set up groups -- and help them make the groups fit the needs they identity.

To make a group "meet the need" of those attending, there are many things to be considered. It's great to have a manufacturer rep come in, toss of info on a new machine, maybe bring some food and beverages, but the meeting needs to go to a deeper level. That's where the coordinator(s) need to be directly involved in planning the group, the meetings, any follow-ups, and how the group is handled.

I've been running a local group, Awake In Philly (no, it is not associated with the ASAA's "A.W.A.K.E." groups) which was originally launched in early 2000 as a "sleep apnea support group," but quickly developed into a much larger organization, meeting the needs of several areas of sleep, as well as working with government officials at local, state, and the federal level. Over time, the growth, development, and other factors caused us to spend time developing the plan that became Awake In America, Inc.

We have several groups right now, with others looking into launching groups. The thing I do with people when they contact me prior to launching a group is walk them through a process to help them plan things out in their mind a little before signing up. Sure, having a lot of groups listed on paper is nice, and the small chunk of change left over after packaging and shipping the Coordinator Kit helps the operating budget, but developing a network, in my opinion, goes much deeper than having people sign up for an idea -- it is helping them through the process.

We've put together a kit to help the coordinators -- probably similar to that used by the ASAA, but I know there are many key differences, as we've been told by a few who were formerly with the ASAA and contacted us. One of the key differences is that we host the website for each group, do the coding, and maintain the site. Each group also gets an "official" email address, and the coordinators get a CD with a variety of tools, sample forms, templates, and other tools (for the PC, Mac, and *nix platforms) to help them get up and running.

Awake In America doesn't try to "compete" with anyone, as we have a different focus and different aim for organizations focused on "sleep terrors" or "sleep eating" -- we focus on sleep and sleep disorders. Each coordinator is free to choose how the group will operate, what it will focus on -- and whether that focus, such as on apnea, is something that's the focus on one meeting, of the group overall, or if each month will present a new topic. That's some of the stuff we help them consider and walk through, but something I press them to ponder prior to signing up.

While "running" a group may not be time-consuming, in theory, I have seen some people literally spend hours trying to figure out how to achieve some simple tasks. Why? Because they were trying to reinvent the wheel with each step. That's why we developed, and continue to develop, the tools we use, as well as the delivery methods we chose. No one needs to have experience running a meeting, creating an agenda, writing a press release, or even inviting a professional to speak. Forms? No biggie. How to design a post card? Not a problem.

Most of our groups are running in a low-key mode, developing ideas as they go, finding what works best. That's the choice of the coordinators, and it is something to be respected, as they are tweaking and honing how things work.

There are many ways to "decide" how "successful" something is, and that's no different with support groups. Awake In Philly isn't even called a "support group" -- it is officially called Awake In Philly Community Education Group because we focus on education for patients, family, health care professionals, business and industry, and government officials. We do outreach to help with insurance issues, compliance issues, etc. Our efforts aren't encapsulated into a meeting that may not be scheduled at a time or on a day convenient for you. That's what sets Awake In Philly apart from other "support groups," I guess. That's the same kind of thing that sets Awake In America apart.

Just three months after "officially" launching (meaning having its non-profit status in-hand, incorporation, etc.), Awake In America launched the first-of-its-kind "xPAP Donation and Relief Program" to help those without insurance, with inadequate insurance, or without the financial means with which to obtain essential equipment to treat their diagnosed sleep apnea. Three months after that, we launched the "Sleep Study Relief Program," reaching out, again, to individuals in that same group -- those without insurance, with inadequate insurance, or without the financial means with which to have a sleep study performed to diagnose their apnea. To date, these programs have assisted around 200 individuals. Just hours after Hurricane Katrina made landfall, we officially announced Operation Restore CPAP -- which was designed to replace lost, destroyed, or damaged xPAP equipment. That program alone assisted 97 individuals in 90 days.

To sum up -- a "support" group or organization -- no matter the focus, no matter the name, no matter the location -- can be good or bad. In general, it's how you define the need the group should meet and is meeting. The need should be the one perceived and identified by those running the group or organization.

We're in the process right now of developing content that no one's ever worked on yet. We're working with individuals around the country, putting heads together, figuring out how best to serve the content, deliver it, and push it. It surprises me none of this has been done prior to now, but I've said that many times over the past six years.

Oh, when talking about money -- I'm laughing here -- I would kill to have half the operating budgets many organizations have -- or in some cases, less would work, too. Man, what we could do with all that money!

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

Good post AwakeInAmerica. However, I would think that these types of groups would be of more benefit to those not having computers or internet connections, those as you say that are lacking in insurance coverage or money to buy equipment with. Boards like this one (well there really isn't any other board that even comes close to this one ) are a great support group to me. I find that I benefit more from discussions (read as postings and replies) here than I would ever benefit from Awake in America meetings even though I have never been to one. I'm sure that they do have there place in the big scheme of things and I can appreciate what you do for people in need of help.

So, somebody please tell me what the benefit of going to an AWAKE meeting would be. All I see it would be is old outdated information; even if they bring in a specialist for a Q & A. Somebody, tell me where I'm wrong.

Why go to an AWAKE group meeting? If you have a group in your area and have the time, energy, and are so inclined ...

To give, not to get.

NightHawkeye, your posts have valuable information for me. So do others. We can share this info with those less computer literate (or unaware of this forum) in our communities by contributing to AWAKE meetings. Take a leadership role (without commiting a lot of effort). On the getting side, I did get up-to-date new information as well at AWAKE. And a huge boost of empathy, compassion, and support in participating in person with other users.

Mile High Sleeper wrote:To give, not to get.

Thank you, Mile High Sleeper. You're absolutely right, of course, if there's a chance of accomplishing something. Brings up all sorts of questions about what could be accomplished in that environment, but philosophically I agree with you. If nothing else, I suppose one could simply provide a handout for cpaptalk.com. .

Regards,
Bill

My sleep lab sponsors a monthly SA support meeting. The sleep lab is located in the building where I work and the meetings are held there. Can't get much more convenient than that. And yet, I have never attended a meeting.

This month I was going to go out of curiosity. I'd been up in the lab and noticed the meeting announcement and asked how many people usually show up. I was told the number is over 80 and growing. That surprised me. The sleep lab person said they have snacks and sometimes vendors give out goodies like free masks.

Well, on the day of the meeting I was planning to go, but I got off work around 5:00 and the meeting didn't start until 6:30 so I figured I'd have time to go home and get in part of my workout and go back. Of course, that didn't happen. I got home and decided I'd better not do the workout because then I'd have to shower and that would all take too much time. So, instead, I took a nap.

I don't know about anyone else here, but once I get into bed it's all over for the evening. When the alarm went off I decided that asking my questions online made a whole lot more sense than getting up and going out into the freezing cold for a couple of cookies and the possibility of getting a mask that I don't really need.

And...in a live meeting, you might get a chance to ask your question but you might not, especially if it's a large group. Also, some people are too shy to ask in person but feel very comfortable speaking out from the anonymity of an online forum.

Darth Vader Look wrote:Good post AwakeInAmerica. However, I would think that these types of groups would be of more benefit to those not having computers or internet connections, those as you say that are lacking in insurance coverage or money to buy equipment with.

Actually, Darth Vader Look, there are some interesting concepts being tried out right now. One idea is sort of a phone conference concept, but there are others, too.

Every support forum, whether a group meeting monthly in a specific location, one that meets every six months at someone's house, one sponsored by a DME that is offered for newbies to xPAP, an online forum (whether a board, an email discussion list, etc.), or other format, needs to be considered carefully by the coordinator in how it is established, operated, and utilized. Planning and execution is always critical to success.

SnoozeHunter,

What you might try and do is either attend just one meeting just to maybe exchange names and phone numbers with a couple of people to phone when you have questions, or find the number for the contact person for the group. Even if you don't attend meetings, it's always good to keep in touch locally with a few people who also have sleep apnea. They may be a good source of recommendations for local doctors or DMEs, about sleep labs, or just generally. And you would be in the loop to learn if certain meetings might have something special to make it worthwhile you attend.

I started a support group and it is small. It's independent, not run by the hospital's sleep lab although a doc and a nurse affiliated with the lab often attend our meetings. One thing interesting happened. One of the members of the group was having problems getting a response from their local DME on a promise they had made. Thanks to the pulmonary physician who attended our meeting, the sleep lab contacted the DME and poof, instant service for this person, right away! So it could be worth your while to keep in touch with some of those from that group, even if only by phone. .... just my two cents.

..

LDuyer,

Those are very good points. I'm going to try to make myself go to the next one in April.

Never hurts to have a little extra support and it would be nice to have a doctor or RPSGT present who could answer questions.

Thanks for your two cents.

SnoozeHunter wrote:Never hurts to have a little extra support and it would be nice to have a doctor or RPSGT present who could answer questions.

Here's a thought:
How about a Q & A panel; on one side a physician, and on the other side just a schmuck with a computer looking up info from the internet.

THAT meeting I'd definitely go to! Kinda like John Henry vs the machine (or even Max Goolis, for that matter). Of course, there might be a problem finding a physician secure enough in his knowledge to attempt it , but I'm sure the results would be enlightening to all.

Regards,
Bill

NightHawkeye wrote: Of course, there might be a problem finding a physician secure enough in his knowledge to attempt it , but I'm sure the results would be enlightening to all.

Regards,
Bill

You're probably right about that, Bill.

Actually, the problem is more likely to be finding a physician willing to stick his neck out and answer questions in anything other than very general terms, for fear of being sued over something he/she says at the meeting.

One thing I'd like is for someone to throw some graphs up on an overhead and explain very slowly in layman's terms how to read them. I'm talking about the ones that distinguish different types of sleep apnea, where and when to count them, and when an arousal or central is okay and when it's not. I try to follow the online explanations and get the high points, but sometimes get lost in the jargon and abbreviations and can't quite make out the area in the picture that's being referenced.

And I have some questions about CSA that I haven't found answers to on the 'net.

SnoozeHunter wrote: One thing I'd like is for someone to throw some graphs up on an overhead and explain very slowly in layman's terms how to read them. I'm talking about the ones that distinguish different types of sleep apnea, where and when to count them, and when an arousal or central is okay and when it's not.

SH,

Remember, we aren't even suppose to HAVE the software, much less know how to interpret the data. LOL! ...I agree that what you describe would be VERY useful.