We’re grateful to our medical community for all that they do for us, but what happens when you feel like a relationship with your child’s doctor (or maybe even your doctor) just isn’t working? Maybe you can’t get an appointment with that doctor (for even several months from now) or you feel that they just aren’t listening to your concerns? How do you know when it’s time to break up with your child’s doctor? Here’s our story.
My son was diagnosed in August 2017 with Type 1 Diabetes. And while we appreciate the care that the office staff and nurses gave my son at the practice we were at, we just never got a lot of attention from the doctor that was assigned to us. Maybe that’s just the way things worked at our practice and most of the practices for pediatric endocrinology are? Maybe it was just our practice? Maybe he’s just always THAT busy? I’m honestly not sure.
For a context, we go every 3 months to our endocrinology practice. We are supposed to see the doctor for one out of the three visits. Two of the visits are supposed be with either the nurse, diabetes educator, or the nutritionist. My son is in puberty and due to that, he has a lot of extreme highs and lows – frankly we need to make sure he is getting the best care possible. Usually when we see someone from the practice, his A1C is taken and we discuss his care and any changes that are made to his insulin pump. The nurses are very qualified to make his pump changes and they have really been terrific, but the fact that I couldn’t get an appointment with our pediatric endocrinologist bothered me. I saw his PA (but she’s left since) and I saw one of the fellows (she’s also left since), but we barely knew our doctor and it bothered me. When we had an issue, I did get a call back immediately, even if it was at 3AM. The office was terrific in emergency situations. There were a lot of nights when I had to call in and get help, especially in the beginning when my son’s blood sugar was still so high all the time and we didn’t know what we were doing. Our doctor never followed up the next day or even checked in to see if my son was okay or if he needed additional care. Maybe that just isn’t done with endocrinology patients, maybe he just had so many cases that they didn’t let him know that we had an issue during the night. Maybe it was an unreasonable expectation that it would be logged and followed up with. While I’m not sure of that reason, I guess that is just the way it is.
We’ve only had 2 appointments in the last 2.5 years with our doctor (one the day after discharge and one sometime in 2018). But after I was trying to make an appointment this past winter, I got fed up that I wasn’t able to make an appointment in the foreseeable future. At what point do you just give up and switch practices? I was at that point.
However our doctor was always super busy and I could rarely can get an appointment with him. I tried to switch to another doctor in the practice and it didn’t happen (I spoke to a staff member about this and she never got back to me). I also didn’t call her to follow up, but I did ask about it again to a nurse practitioner and nothing was ever followed up on. I even asked about it when I would call and make an appointment. I didn’t want to be labeled pushy. So this late January, after trying to fruitlessly make an appointment with our doctor, my husband overheard the conversation and suggested I just find another practice. Stunned, I looked at him and thought about it. Maybe that was the best idea? Could I really breakup with our practice? Did other parents do that?
I weighed the pros and cons. The practice was a good car ride away and even when I was able to get an appointment, I had to pick up my child and race to the appointment. We liked the nurses a lot, but once my favorite nurse at the practice (she knows who she is!) left, I kind of lost steam. I did like the diabetic educator and the office manager and the other nurses, but was that enough to stay? Not exactly.
I wanted a doctor who I could get an appointment with, even once every 9 months. But also, and importantly, if there was an emergency, the children’s hospital was affiliated with that practice and it was a reasonable ambulance or car ride away. But was that the biggest reason to stay? They would still have his records if we needed ER care.
I was torn, but decided to at least research options. I looked into some practices and did some research with doctor reviews and other Type 1 Diabetes family groups. I found a good choice and then booked an appointment with that doctor at the end of the month. I was stunned that I got an appointment and made arrangements to switch records to that new practice. This meant going into Manhattan, which I wasn’t wild about, but I had to compromise somewhere.
The week before I saw the doctor, I got a call from a senior staff member at the practice I had been using. She was surprised that I was switching practices and I explained why I was leaving. She did offer to have me see a different endocrinologist at the practice, but frankly I had made my mind up already. It wasn’t like when you leave a job and they offer more money and you stay. I felt that my mind was set. I had spoken up and no one had told me to talk to her before and no one passed it onto her that I wasn’t happy. I did think it was nice of the staff member to offer an option and I probably should have gone to the person before and shared my concerns, but frankly I didn’t think that it was an option and I had spoken to two staff members about it plus the telephone appointment staff and nothing had happened. Why was it on me to keep asking staff members to switch? Going forward, next time I probably would go to the senior staff member instead of other staff members.
I was truthful when I said I left because I couldn’t get an appointment with the doctor. The nursing and office staff was always 110% efficient. I was always able to get a call back for medication and diabetes supplies and I always got a call back in an emergency (which we had lots of). But that wasn’t enough to make me stay.
So, we had our first appointment and I was happy with the new doctor, she totally clicked with my son and I. She knew the latest technologies. She introduced us to one of the nurses who was going to be at the Diabetes camp we were booked for this summer. There was art therapy we were entitled to. I liked the office layout. They had a lot to offer.
A week or so later, my son had a very scary low. I thought he was having a seizure. It was bad. I was able to get him through it without calling the doctor, but the next day I left a message asking for a call back and told her what happened. Something I probably should have done with my last practice. This new doctor called me back and had me send the data from his pump and his CGM monitor. She was able to figure out what happened and how we could handle things better. She called me back and we discussed it. I felt like I had a partner in his care. This was new to us.
Breaking up with our original doctor was worth it just for that.
Now, how can this relate to you? If you’re not happy with your child’s pediatrician, specialist, endocrinologist (or whatever) – ask if you can either talk about this with your doctor or the office manager at your practice. You have a right to care from someone that you can have access to. You have a right to be happy with the practice/doctor that you see. I should have spoken up when I first had problems getting an appointment, because I would have permanently switched doctors earlier in my son’s Type 1 Diabetes journey. I don’t blame the doctor, I blame myself for not doing something about it sooner.
Image by granderboy from Pixabay