What has been your experience with patient advocacy groups?
Negotiating the ins and outs of the medical system when you are ill can be daunting. Setting up appointments for appropriate tests, coordinating results for consults, scheduling treatments, etc. It’s confusing and exhausting.
Have you ever been helped by a patient advocate? How did you get one? Were they helpful to you?
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I was in the emergency room a few years ago for extreme pain in my abdomen. Someone came to see me and said she was an advocate but it was all noise to me at the time. I don’t remember seeing or hearing from her again.
I’ve never encountered one, so far as I know. I haven’t been in the hospital much, but my husband was. I was the one who did all that on his behalf. He couldn’t have done it himself, and in his place I couldn’t have either.
I wrote everything down in a thick notebook: names, dates, details of consultations, test data, treatments, home care, everything. There’s no way I could have done it by memory. Even if he’d had a formally designated advocate, I still would have kept my own notes. Hope I can do something like that for myself when my turn comes.
Even better would be to have someone else do it for me, but I wouldn’t feel confident relying on someone for whom I’m an undistinguished one of dozens of clients who make up a workday agenda. So I hope someone locates and looks at my AMD.
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