P/CALS,
This thread horrifies me, because those new to the ALS world might infer that clinic visits are some kind of "pay it forward" obligation to future generations. They are
_not_. Go if you benefit. Don't if you don't.
Epidemiology data is coming from the registry and one-off studies.
Data about treatment/equipment effectiveness, such as it is, is widely available in forums like this, claims data, existing chart data, not to mention the knowledge bases in SCI, TBI, MS, MD, all of which are inadequately leveraged in ALS. Additionally, coordinators at the MDA/ALSA should be mined further than they are insofar as they make home visits. The same is true for hospice, palliative care staff...I could go on.
If you think your comments at clinic about how much you hate your wheelchair or your unusual ear pain are bubbling up to some kind of national/global database that is going to drive future treatments, I have a bridge to sell you. FVC curves? "Strength test" results? Please. I've published in clinical journals, I've done meta-analyses and systematic reviews, and it's the actionable that gets acted on (yes, that is a tautology
We are the patients and caregivers. They [the clinics] are getting paid. Check your EOBs for how much. Even if you have no co-pay and/or have met your deductible, what is the value of your time? Lost sleep? The effort, emotion and exhaustion? The opportunity cost if that effort were applied to something more ... fun? Meaningful? Lasting?
The last time we got anything substantive from clinic that we couldn't have accomplished otherwise was a signature on the DME's order for Larry's PWC in 2011. When we last went, more than a year ago, I'd requested in advance that one of the usual drop-ins be excluded from our schedule [which is always your right] because she generated more harm than good. I got tremendous and less-than-truthful pushback on that simple request (naturally, I won, but why a fight? It's called billings) and that was additional evidence that patient wellbeing, in the true sense, was not the priority.
Obviously, all clinics are not equal. Your first health care duty now and always, healthy and sick, is to yourself. Go where you need to be, do what you must, then be where you want to be. Your loved ones wouldn't have it any other way.