I think we need to consider that our system of health care, which has focused largely on curative interventions, needs to focus on caring interventions. What this means at a policy level for people living with progressive illness—and I would say that it definitely impacts Parkinson's but transcends that—is that care requirements need not be something focused on prognostication.
What I mean by that is that when you go into a hospital, everything's free. It's free, because that's acute care. We can pay for that, because we know it's short-term. For people with chronically progressive diseases that result in huge amounts of functional loss over time, where's the equity? What I would suggest is that the volume of care and the focus of that care should be focused largely on function, not on the time you have in an acute-care bed.
Equity means that when you get a lot of services, because you have something that's short-term, and then you get relegated—that's the term I would use—to something more chronically progressive in its focus, such as long-term care, those programs, if that's the emphasis of health care, are going to focus on long-term care as an economy of scale. Put a lot of people in a box, and things get cheaper. What are we going to do with those programs to make sure that they're equipped to focus on the needs of those people?
Policy level means that you have to fund it more. Those people work their tails off, but it's conveyor-belt care: get them up, get them dressed, get them fed, get them back to bed. It's not good enough. I think we need more care, and we need to focus on long-term care, if that's what it's going to be, by changing the focus of those services.