I’ve been away from life-as-usual for awhile. It’s been a roller coaster: from the lowest of lows losing my mother-in-law to ovarian cancer (you can read more about the problems with treatment here) to the highest of highs — having our four kids and their families visit from all over the country. I’m ready to return to some normalcy!
Having closed up my computer and ignored email for several days, I returned to hundreds — literally hundreds — of emails. I was able to delete the first 300+ — spam, of course — and now I’ll deal with the 100+ that still require replies or some sort of action.
Among them are a dozen requests for contacts with patient advocates. They are from all over the country: St. Louis, Missouri; Lewisville, Texas, Northern California, and many other places — and I can’t help. Frustrating, frustrating, frustrating.
This brings to light a real problem which I’ve found much of organized healthcare wants to ignore. The two biggest complaints I hear from patients both fall into this healthcare hole.
The most prevalent complaint is that someone has seen several doctors, had several tests, perhaps at different testing centers, and there is no one to put all the information together to arrive at a conclusion. There’s no umbrella person. No conductor of their healthcare symphonies. Whereas we would think their primary care physician would oversee that, sometimes the referrals are daisy-chained; that is, one doctor sends them to the next, sends them to the next, etc — and no ONE person can help them put it all together.
The next biggest complaint I hear is from the person who just can’t get diagnosed with anything they can get their arms around. Symptoms get treated, but problems persist. They get sent to specialists, none of whom will talk to each other, and no conclusions are reached.
There is a real need for people who can help translate this information for patients — who are they? I know is some places they are called “caseworkers” — but the bottom line is that I can’t find them to refer them.
If you are a patient advocate, or if you know a patient advocate — please contact me.
Next steps: beginning to put together educational programs for those who would like to study patient advocacy as a career. Are you interested?
OK — back to answering all this email! I did find one fun one — a voice from my past, a fellow Bucknell University, Class of 1973 graduate. (Hey Bev. I’m so pleased to hear from you!)
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