I heard yesterday from a woman (I’ll call her Jane) in Orange County, California who has been undiagnosed for more than ten years. She asked me if I knew of anyone who could help her navigate the medical care system to get to the bottom of her diagnosis.
How frustrating it is for patients who can’t get answers! There are many reasons that happens, of course, but it makes it no less frustrating. And for patients who have no medical background ( probably 99.99% of us!) it’s like trying to do a crossword puzzle in some language we’ve never heard of.
Failure to diagnose is one reason a patient needs an advocate. Research is another. Shepherding is another – someone to accompany a patient to doctor appointments, or to sit with them in a hospital. Sometimes a patient just needs someone to translate medspeak. The reasons are many, the need is high.
I KNOW there is someone in Orange County who can help her! But I have no idea who that person is. If you know, will you tell me? Or if you know of people in other parts of the country (US or Canada), then let me know and send me contact info. Jane’s request is common — I hear from patients who need assistance all the time.
But where are all the patient advocates?