So I’m in Crouse not getting treated; it’s a hospital—it’s what they don’t do. I was misdiagnosed. They said the issue was uncontrolled diabetes but, in fact, it is chronic fatigue immune deficiency syndrome. I am not going to die; I am going to live and I want to be treated. Now that’s not too hard to understand, is it? I mean, it’s like so-o-o common that you do it all the time, right? Get sick, go to the doctor, get treated, feel better.
Not in Crouse Hospital. You see, I’m on ALC, which is Alternate Level of Care, which means that you are good to go but they just can’t find anywhere to put you where you’ll stay good, so you stay in the hospital. And you only get to see the doctor once a week. Everybody else in the hospital has to be seen once a day.
So I ask every single person who comes in my room—doctor, nurses, Care Coordination, Pt. & Guest Relations, the housekeeper, the chaplain—how to get off ALC so I can get treated.
Nobody knows. They take my question, go out into the world and, like the dove from the Ark, they never come back with a twig in their beak. It wouldn’t surprise me in the least if the answer is NO at the executive level, so they just don’t come back.
So I call the NYS Dept. of Health hotline and tell them about these neuro-shutdowns I’ve been having—two on Thanksgiving weekend—and how I want a neurologist to take a look. And some other things.
And the hotline passes it down to the NYS DOH Regional Office, where I talk to Marcia, who flatly tells me that DOH works with ADMINISTRATION and no, they don’t do anything in the way of protecting patients who are being denied treatment. And then I talk to the regional director, David Brittain, who says he will just step out and talk to his hospital care staff and someone will follow up. And minutes later Colleen calls me.
And Colleen, in a brassy, belligerent, official government I AM GOING TO TELL YOU voice, says that I cannot get off ALC. Just can’t do it. If I was at home—if I still had a home—I could go see a doctor but because I am in the hospital I cannot see a doctor.
Then Colleen tells me that I cannot get a neurological consult because I don’t need one because the doctor says so. The doctor in question is some kid from Syria by way of Chicago who has been on staff at Crouse a few months and was assigned to my case LAST WEEK. This newbie who knows nothing has the full weight of the entire NYS Dept. of Health and its multi-billion-dollar budget behind him.
Then Colleen states unequivocally that that I CANNOT CHALLENGE A MISDIAGNOSIS. That’s when I hang up on her. CAN’T CHALLENGE A MISDIAGNOSIS??? DOH—Right even when it’s wrong.
So then I call Legal Aid. Instead of helping me, the staff sits around a table once a day to brainstorm where to refer all the people who come to them. They simply can’t begin to help people. Not enough staff.
Decades ago, the Religious Right decided that the way to stop pregnant women from getting abortions was to shut down their legal aid, so they went to Congress and got the Legal Aid budget cut enormously—one- or two-thirds?—and Legal Aid has never been able to get the money back. About ten years ago a study was done that reported that something like 85% of all New Yorkers legal needs were being met. Unless you were poor. Then it dropped to 12%.
So Legal Aid gave me the phone number for the Medicare Rights Center in New York City. The nice lady volunteer left me to talk to her supervisor because she didn’t know what to do. She’d never gotten a “denial of treatment” case before. Mostly what they do is about insurance, not treatment.
Then she called me back and said I should call the NYS Dept. of Health hotline.
There are more than 19 million poor people in New York State. This has been the story of one of them.