Over the summer, L’s neurologist referred us to a pediatric geneticist to see if they could help us find the “why” for L’s hypotonia. The geneticist was based an hour away at VCU, so nothing too terrible. We were already seeing the neurologist not far from there anyway.
I called to schedule the appointment in August and was told they had a satellite office closer to home — like 15 minutes away. So they scheduled the appointment for that location in October.
Like most satellite offices in our area, they’re run on a skeleton crew and only see patients a few times out of the month. This geneticist only sees patients two Fridays a month here. Not really ideal, but it was close to home.
I had to take G out of school and my parents came down to watch him. Mr Boots took the day off. I was extremely excited to finally move forward in (hopefully) finding an answer.
We arrived and the receptionist handed me paperwork. One form discussed telecommunication. I read it, but couldn’t understand what it was telling me. It sounded like they offered to video chat, but I was a little unclear when. I honestly assumed it was for discussing test results or if we wanted to reach the doctor to talk.
I was going to ask the receptionist when the nurse called us back. She told us we’d be video conferencing with the geneticist and had we ever done that before?
I told her no. And I said I didn’t understand what their form was explaining.
She said we’d be talking with the doctor, student geneticist, and genetic counselor over the computer. “Everyone loves it!” she boasted. Other offices were hoping to set up the same thing soon.
The nurse went on to measure L and asked us basic questions. As she weighed him, I saw another couple leave an exam room sans doctor. I began freaking out as it dawned on me that we would not be meeting with live person; he’d be sitting on the other side of a computer screen.
The nurse continued her bubbly conversation as she set the computer up but I was only half listening. She bid us goodbye and that’s when I said, “Wait. The doctor isn’t here. We will be talking with people through a computer?”
She said yes. I told her I wasn’t okay with that. She left and another nurse popped in. He assured us we’d have all our questions answered and that this is what we agreed to when we made the appointment for that location.
I let out a resounding, “NO.”
I started shaking as I told both nurses that we were told to come to this location because it was close to where we lived. At no point in time was it ever communicated to us that this was all electronic and we wouldn’t be seeing a doctor in person. I told them I really wasn’t sure I was comfortable with this set up.
The second nurse told us to let the people on the other side of the computer screen know my feelings. He said I had every right to cancel if I wasn’t comfortable and he apologized for the miscommunication. He got the student and counselor on the screen and introduced us and left.
The ladies on the other side of the screen seemed very nice and lovely. They introduced themselves, but I wasn’t really listening. My head was spinning. The counselor asked if it was okay that the student be there for the session. I looked at Mr Boots, “Are you okay with this?”
“I don’t even know what’s going on,” he said. It hadn’t quite sunk in that the only people we would be seeing in person were the nurses and receptionist.
I turned to the computer. “Look,” I said. “I am really sorry, but I’m really not okay with any of this. I wasn’t told this was how the appointment would be conducted. I expected to see you all in person and now we’re being told this is being done over a video chat. I’m not okay with that.”
“Well, when you made the appointment you were told this is how it would be done.”
I got defensive. “No,” I shot back in anger. “It wasn’t. My appointment was made for this location because it was close to home. I have zero issues driving an hour to your office. Zero. I would have chosen that had I been told I wouldn’t be seeing a doctor here. I don’t want to go through with this.”
“If you cancel, you won’t be able to be seen until sometime next year,” the counselor continued. “Our doctors are booked until March or April. We could put you on a wait list, but those are short notice.”
“That’s fine. I am sorry, but I want to see a doctor in person.”
The counselor said a quick goodbye and the screen went black. I stood looking at the blank screen for a moment, shaking. I’ve never been That Patient before. I’d seen them. I’d encountered them at work. But I have never been one to get so upset that I had to walk out on an appointment.
Then the tears began to roll down my face. I took me the rest of the day to figure out why they came. I was angry, for sure. My expectations were not met. I took G out of school and Mr Boots took a day off of work for a bust appointment. But it was more than that. This visit was something I had been wanting for months to get done. I finally found a doctor who was open to finding a “WHY” for L’s hypotonia without insisting on sedating him for an MRI first. We had to wait for the appointment with the geneticist, and I knew we’d have a wait for results of any blood work. But now? Now we’d have to wait even longer just to see a doctor to approve any labs.
I got the second nurse and told him we had canceled the appointment. He apologized, I apologized. He insisted I had nothing to be sorry about. We were actually the second family who wasn’t told what to expect when coming to their office that day, so clearly the person scheduling appointments wasn’t doing their job properly. I expected to be able to reschedule our appointment with the receptionist, but she wasn’t able to do it. I would have to call myself when we got home. We were handed a refund and a $5 voucher for VCU’s hospital cafeteria.
I sat on this experience for a couple weeks before rescheduling L’s appointment. I really wasn’t sure I wanted to go back to this network of doctors. But it was who the neurologist suggested, so I went ahead and made L another appointment. Scheduling was just as much of a hassle as it was the first time — I swear is a WAHM doing it from home, which isn’t a bad thing, but she never picks up when you call and you have to wait for a call back on what sounds like her cell phone with bad reception. L couldn’t be seen until June.
Eff. That. Someone somewhere had to have earlier openings. I spent a week looking for other pediatric geneticist and after having two pleasant conversations with receptionists for the doctors at UVA, I made an appointment there for this month.
“And we’ll be seeing a doctor, right? In person?” I had to make double sure.
“Uh, yes. Why wouldn’t you?”
I laughed at the bewilderment in the receptionist’s voice, still in disbelief I even had to ask the question at all.
This doctor is 1.5 hours away, but the ease of scheduling and the fact that the receptionists let me vent about my experience at VCU made me feel the extra 30 minute drive might be worth it. L already has an appointment with a developmental pediatrician there in January, so it will give us a chance to see what the area is like. They have a satellite office about an hour away, and I tried making an appointment there (hence having a conversation with two receptionists), but they were booked out later. We’ll be meeting with the head of the department, so hopefully it’s worth it.
Apparently telecommunication appointments (telemedicine) are A Thing now. We signed up for new health insurance last month and our paperwork outlined whether or not telemedicine is covered. I’m honestly a little worried about this new direction in healthcare. I’m all for the option to discuss test results or have a consultation with your doctor/nurse if you’re an established patient. Heck, I think it’s a great option for someone needing talk therapy! But in cases where doctors should be seeing their patients face to face? No.
Personally, I felt it made the people who’d be involved in L’s care look too lazy to make the hour drive to see patients themselves. Plus, as Mr Boots told me, it takes the entire bedside manner out of the visit.
I posed my experience in the hypotonia Facebook group I’m in. A couple moms assured me the doctor and staff would have been able to get what they needed over the computer screen. And I could see that being the case of the genetic counselor. But more told me they would have done exactly as I did and left. These moms explained that their doctors took their own measurements and did their own exams on their kids. This is exactly what I was expecting from our visit. How can that be done effectively through a computer?
“You’re your child’s best advocate!” I’ve been told over, and over. By doctors. By therapists. By people on the internet I’ve never met before. Not only did I have to advocate for the best care for my child – I had to advocate for him to see a HUMAN BEING.
Am I the only one who finds that ridiculous?
I guess in the future we’ll be seeing more of these:
Have you encountered a telemedicine doctors visit? How did it go? Would you consider it?