In mid-January, I took a Cologuard test. That’s the at-home screening test for the eminently treatable colon cancer that you can take if previous colonoscopies have been uneventful and you have no risk factors.
I did not expect the e-mail that I received a week ago that reported the test was positive. Helpfully, the e-mail shows my test result (Positive) and the normal test result (Negative). That was a shock. I immediately e-mailed my doctor, let’s call her Dr. J., who replied that I should see a gastroenterologist and asked if I had one. No, I did not. So she responded, not with the name of anyone, but with a phone number, and the note that she didn’t know who was available.
Without having the name of a doctor, I decided to resort to my friends, first e-mailing a friend who I knew had a GI doctor she liked. When I called his office the next day, one of the first questions I was asked was about insurance. When I said Medicare and a supplemental, I was told this doctor did not take new patients on Medicare. (This is a recurrent problem. When my longtime doctor retired six years ago, the doctor she recommended also did not take new patients on Medicare. Many doctors will grandfather in their current patients once they go onto Medicare, but won’t take new patients. Why? They don’t get reimbursed enough?)
Daunted by the thought of calling the four or five other doctors recommended by friends and being told they didn’t want new patients on Medicare, two days later I called the number Dr. J. had given me. After I explained my situation — I’d gotten a positive result on a Cologuard test and Dr. J. had recommended I see a gastroenterologist — the person I was speaking to said the earliest appointment they could give me was: mid-July.
I was aghast. “This isn’t a routine situation,” I said. “That’s six months from now.” The person was apologetic, but firm. There was nothing earlier. After I ranted a little bit, she asked if I was willing to go to another location. That’s when I learned I was speaking to the GI division at the Mt. Sinai location where Dr. J.’s office is; she’s in the geriatric practice at Union Square. Of course, I could go to another location; in fact, if she could find someone at Mt. Sinai Morningside, that would be even better, as it’s only a few blocks from my home.
I was transferred to Mt. Sinai Morningside, and eventually to the office of Dr. M., where I was told I could have an appointment at the end of April. Well, three months is better than six months, but it still felt like a long time for me to wonder whether I had colon cancer (a 4% chance) or only precancerous polyps (51% chance) that might turn into cancer in the next three months. I ranted a little bit here as well, and the scheduler suggested that I could see whether my doctor could speak to Dr. M about seeing me sooner.
So I e-mailed my doctor the same day to report the situation. She said she would reach out to a colleague for suggestions.
There was no news on the weekend, of course, only increasing anxiety over now thinking I knew the name of my death and wondering whether I’d have enough time to finish all the writing I want to get done.
Monday I received notice of a new message on my Mt. Sinai MyChart page, a badly designed website. It read: “Earlier appointment offers are no longer available for NEW PATIENT on Thursday April 27, 2023 at 10:00 AM EDT.” Who sent this to me? What did it mean? Was there some time recently when I might have gotten an earlier appointment, but that time had passed? Maybe this was only a form letter, but couldn’t they have at least inserted my actual name instead of the bland “NEW PATIENT”? It felt so disrespectful.
In addition to fear of what further tests might reveal, I was now beginning to feel helpless, as well as angry. I called Dr. J.’s office and spoke with one of her staff. What is going on, I wanted to know. My message would be passed on to the doctor, I was told. Half an hour later I got a call from the office manager. She was very apologetic, said she was doing everything she could to see about getting an earlier appointment. She was in touch with the office manager for the GI division. Again I ranted about how outrageous this felt, how helpless I felt — surely this wasn’t standard operating procedure for someone who’s gotten a positive Cologuard test.
The office manager then gave me the phone number for something called “physician access,” schedulers who could make appointments for any doctor in the Mt. Sinai system. Was I willing to go anywhere in Manhattan? Of course, I practically shouted. She also gave me the number for “patient relations” should I want to make a complaint.
I immediately called physician access and got an appointment in three days(!) at an easy to reach location. There was a brief glitch when I googled the doctor’s name and did not find him listed at the Mt. Sinai location where I’d been told his office was. I quickly called back physician access and was assured that he did indeed exist, and at the location; he was new, so no doubt the website had not been updated.
I called the office manager back to thank her for her help. But I also wondered, why couldn’t I have been given this number to begin with? How exactly did the bureaucracy of this immense hospital system operate? Surely the stress and anxiety of the past week could not be good for my health — don’t all the wellness articles say “AVOID STRESS”?
What could Mt. Sinai do better? I think it’s far too easy for people who work in an institution to forget that others, patients in this case, do not know how the institution works or, when it’s as big as a large urban hospital system, how all of its parts fit together. Perhaps a little booklet that explains clearly, even with graphics, where your doctor works, how that center or division or clinic fits into the overall system. And especially, where and to whom to go for help for the variety of issues patients might have.
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