Looking for a good CPAP support group to recommend to your clients? Link up to the American Sleep Apnea Association’s online patient-to-patient Apnea Support Forum at www.apneasupport.org.
Created in June 2005, the site already boasts more than 2,000 visitors. Mike Sussman, one of the administrators of the forum and a CPAP user, says that Executive Director Ed Grandi enlisted his help at one a Sleep Apnea Awareness Day to get the group off the ground.
“I was fairly new to sleep apnea. I was diagnosed in the December pervious to that. And I was finding there was so little information readily available online. I talked to Ed about getting more of this information available. So, he immediately said, ‘Great. Thanks for volunteering,’ ” jokes Sussman.
Sussman put his money where his mouth is, so to speak, and got busy creating the site.
The forum, which Sussman sees as a way to improve compliance, includes a chat room for patients to talk about some of the common problems they face with equipment. “Thankfully a lot of the folks that do come to the support forum, they’re looking for answers, so they’re already kind of part of the way there,” he says. “They’re already in that mode of I want an answer before I just give this thing up. Too many of them I think are not really given any option. ‘OK, it’s four o’clock in the morning, where do I go? I can’t figure out why this isn’t working. This thing is squealing, making all kind of noises or I can’t get the mask to seal right.’ And they just don’t know where to go. And that’s why we created that resource. Hopefully it will help everybody — the DMEs, the patients — and ultimately we’ll get people treated and stay on treatment.”
Several sleep professionals are already on the board, actively volunteering and giving advice to sleep apnea patients. Sussman says a lot of providers are also linking up to the Web site because it’s not commercial.
“Some of the support forums that have been out there have been sponsored by online DMEs,” says Sussman. “I can understand that if I am a local provider, I?m not going to want to send them to somebody that’s going to quote prices that are lower than mine. And so, it’s kind of a double-edged sword. They want people to get help but they don’t want these people to say, ‘Hey, I’m Bob CPAP and I can get you this for only whatever.’ So, because we’re non-profit, we’re not associated with any DME, any manufacturer … we’re trying to maintain that separation so we can get a very broad base, so that anyone can feel comfortable saying, ‘Hey, go there; you can get some good information.’ “
The site can also be accessed via the ASAA home page.