“Go have a seat,” the receptionist at the imaging center told me, gesturing to the waiting room. It was a close, poorly ventilated space, and several of the chairs were already occupied. I turned back to the receptionist.
”I have a primary immune deficiency,” I patiently explained. “I spoke to the scheduler about this. She said I could wait somewhere isolated.”
”This is what we have,” the receptionist said indifferently and turned to her computer screen.
I requested to speak to the practice manager. He immediately escorted me to a small room that had been set aside as an isolated waiting area. He also explained that the front desk staff probably didn’t know about it, since they didn’t need to use it that often. Either that, or the receptionist had made a judgment call that I didn’t “look sick” enough to require it.I’d like to say it was the first time something like that has happened to me during the pandemic. Unfortunately, it’s not.
Throughout this pandemic, patients with chronic illnesses have been encouraged not to skimp on their medical care; to continue with their regular checkups and screenings. It makes sense. Serious illness doesn’t generally come with a pause button. However, in my own experience, some facilities are not taking the steps to truly make that safe for us.
I have a form of genetic primary immunodeficiency and several heart issues, among other things. I know that I need to be far more vigilant than someone with a fully armed and operational immune system, so I try to take as much responsibility for that as I can.
First tactic: Not going out at all. I’ve followed doctors’ orders on this one and have only left my home for medical care since March 2020. Most medical appointments have been conducted online for the past year. More than a few conversations with my doctors have included some variation of the phrase “we’ll schedule this when it’s safer.” But some, such as my infusions, imaging, and bloodwork, must be done in person.
Second: I try to get the first appointment in the morning, no matter how early that might be. I’ve been scheduled for MRIs at 6:30 in the morning. Being there early usually means that there are fewer people in the facility.
Third: I ask if there’s an isolated place where I can wait. I’m not trying to cut the line. That needs to be understood. I’ll wait as long as you need me to. ‘Patient’ is both a noun and an adjective. I just need to do that somewhere that is not a crowded waiting room. I have an immune deficiency, I pick up infections a bit more easily than some of your other patients, and we’re in a pandemic.
To be fair, some medical facilities do understand. At my ophthalmologist’s office, for instance, they whisk me into an unused exam room immediately. Others make a point of looking through the schedule with me to find a date where the first appointment of the day is available.
Much of the time, though, things don’t go well. There have been times I’ve scheduled an appointment, confirmed their safety procedures, and arrived to discover that nobody at the front desk knows what I’m talking about. There are other times where I’ve been flatly told there’s nothing they can do for me, and it “won’t be long” in the crowded waiting room. Worse, there have been times medical staff has been hostile when I’ve asked to be proactive.
Of course, every doctor’s office will reassure you that they are doing everything they can to keep their patients safe. But “safety measures” I’ve observed often amount to nothing more than taking away the pens and putting a bottle of hand sanitizer on the counter, or taping off a couple of chairs in an enclosed, poorly ventilated space. Often, the only measure these practices have to keep patients distanced is to tell them to wait in their cars, which is a bit of a problem for those of us who don’t have vehicles. I’ve been to practices where the staff has their masks under their noses while interacting with patients in public spaces, and other practices where people crowd at the counters.
I daresay that most of us were unprepared for the starkly frightening realities of a global pandemic. Medical practices are dealing with reduced staff, far more stress, and more restrictions in the same spaces they’ve always had.
But there have always been patients who are immune-deficient or compromised. There have always been people who come in with infectious illnesses who need to be isolated from the rest of the waiting room. They should always have been aware that some of their patients are more vulnerable to infection than others and may need safety measures that other people do not.
If our physicians want chronically ill patients with limited immune function to continue to get care, they need to ensure it will be safe to do so. There needs to have a clearly delineated protocol to keep more vulnerable patients safe. It needs to be communicated to the staff and available for them to consult at all times. And it needs to be more than a taped-off chair, a fresh pen, and a flat statement that it “won’t be long.”
Denise Reich is a patient advocate.
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