Originally Posted by indigogo

I'm with you, Peg! I'm outraged that what happened to Paula could happen to anyone - but I'm especially frustrated that it happened to Paula - a knowledgeable, longtime Parkinson's advocate. This is why we have built a community - to take action in such a circumstance.

I spoke to Paula at length on Saturday; so glad to hear the humor in her voice, but our conversation was her talking and me responding with a series of gasps followed by "OMG"!! every few seconds. I told her we would do something.

I've also spoken to Bill Bell and Greg and AJ to try to figure out if there is a way to move one or more of the orgs forward to promote an educational plan for health care providers (PWP aren't the only sufferers - diabetes patients in hospitals and nursing facilities also have trouble getting insulin when they need it). Bill likes the UK plan that others have spoken of; he has talked to PDF about it in the past, but it might take a story like Paula's - happening to a person like Paula, who is well known by all of the PD orgs - to get the ball rolling.

It angers me that the only way to get proper care in the hospital is to have an in-person advocate at your side (I have also learned this the hard/sad way this year as my mother is in longterm skilled nursing for Alzheimer's; my dad's daily presence is integral to her care).

The patient has been lost in a system that caters to the bottom line - it's not efficient/too expensive to individualize institutional care. The result is the kind of torture that Paula had to endure. It could be anyone of us.