Frank: Yeah, both the patient and the caregiver. And the heck of it is, you need somebody that has all the problems I do and have experienced the healthcare system and also is articulate enough to talk about it. I was asking one of my doctors, the one that I’m so very fond of, I said “Why was I picked?” She said because frankly, I was the only one standing. She had lots of patients that would qualify to be asked to be included in a research study but at this point in their lives they could not articulate their experiences.
So that’s part of the thing, getting people that can say what’s wrong with the healthcare system and talk about it. We all complain about it but how do we fix it and get involved in that process. So, this is partly why we’re involved in research studies. We are advocates with a small ‘A’.
My experience is that hospital settings, often the patient whether physically or mentally ill at the time can’t really do much and I’ve been in that position myself. So again, the caregiver is the one. It needn’t be a spouse. It can be just somebody that really knows the person. Often that’s the case. It’s a good neighbour, whatever the relationship is. And we all know people like that that actually care what happens and they step forth and speak for the patient. This is why I say the caregiver is a resource that’s just incredible.