Engagement means stop treating patients like Children

We've been having a discussion about what patient engagement means over on the S4PM mailing list in the past week.  Here's a story I thought I'd share:

My wife's C-PAP machine is in need of replacement.  The fan now keeps us both awake (even with ear-plugs).  The unit we have is fairly old, and while my wife is pretty happy with that model, that unit is no longer manufactured (in fact the company that makes it has been acquired and then spun-off since).

When we originally acquired that unit, my wife researched a number of units online, and found the one she wanted, with the features she wanted.  In order to get it, she had to go through a DME supplier in my state, who had to special order it because they don't usually provide that unit (it's not pricey enough, apparently).  In case you've never experienced this, a C-PAP is a medical device that is only available through prescription (at least in my state), and even though it is very easy to set up, can only be configured by an authorized person to the setting prescribed by the healthcare provider.  Oh, and the company that we originally got it from is not in business any more.

So she called the doctor's office today because she needs the prescription information so she can get a new device.  Just to replace the device, we have to jump through all those hoops again.

My wife spent more than ten minutes explaining to the staff at our Doctor's office her problem with the current machine, and that she doesn't need another sleep study, that she's had one recently, that the settings for the device are X and Y, and that she needs the prescription to be communicated to a company that will provide a new device.


We finally managed to get someone to understand what we needed, yet it took more than 15 minutes of her HCP's staff time for her to get halfway there.  We're now waiting on a call back from the company that my HCP contacted with the prescription information, and we'll see what they have to offer, or if we need to go through that special order process.  What a royal pain this has been.

She's had sleep studies every three years, and her settings haven't changed.  She doesn't need another test.  She doesn't need a prescription other than to get the equipment she needs.  She doesn't even need advice on what kind of equipment to purchase, or how to use it.  In fact, she knows how to adjust the settings on several models of CPAP (as do I).  When you live with a piece of durable medical equipment like that, you often know more about it than some of the folks who are supposed to know how to sell and service it.

This is one of those times when I wish our healthcare system stopped treating patients like they were children.