Today, during one of the sessions at the World Parkinson Congress, one patient stood up and asked the question: “How do we get our neurosurgeon, pain management specialist and neurologists to talk with each other?”
The physician instructing the session provided an all-to-frequent answer: “I must say that I really do feel your pain. The health care system was not designed to help you out. You are your own manager, when it comes down to it.”
Then the patients started to chime in with some of their opinions. One gentleman approached the microphone and instructed the man that asked the question.
“Speaking as a patient with Parkinson’s disease, I also have a problem with hypertension. I decided some time ago, that my greatest physician was going to be the physician that treats my hypertension. If my PD doc makes a change in my meds, I inform my hypertension doc. If he doesn’t like what my PD doc has done, I quickly get back to my PD doc.”
Another patient chimed in: “The patients become their own best expert. You ask questions and demand answers”
Understandably, patients are very dissatisfied with having to manage more of their own care. It is a service that doctors used to provide. However, the breadth of medical knowledge has expanded so much, that a neurologist cannot coordinate all of their non-neurological care. In today's health care system the philosophy is: It is your body, and you need to own the decisions that you make about it. Physicians can help you understand the pros and cons of treatments. They can also help you understand the risks associated with those treatments.
Again, this is very dissatisfying for all of us, and presents some unwanted responsibilities to PD and other patients.
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