Over the years, I’ve lurked and read through the wonderful posts submitted during various Blog Weeks. I’ve decided to take the plunge and join in this time. So playing catch up today before I go to read the wonderful words/thoughts on these topics. You can click the image to connect into this year’s topics and links.

Monday: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

I love my daughter’s Endo and CDE. With the exception of one appointment, they have been with us since D Day and I truly love them like they are part of our family. Our team is focused on quality care and do not quantify us into getting in as many patients as they can for the day. When we got our military orders moving us 270 miles away, the only reason I cried was because I thought we could no longer have them as part of our care team. So with this prompt, I have to focus on our experience with the “local” Endo.

You would think that moving to the Chicago area, we’d have tons of Pediatric Endo’s to access. I thought that too, until we were given a referral to Milwaukee. Insurance only had the one option for us. So I started the process to transferring into the new practice. Red tape after red tape. They wouldn’t even discuss setting an appointment with us until after they had her medical records from our previous team. Week after week, call after call, I was about to lose my temper, I was finally able to set the appointment time for 4 months later. This would put us at the 6 month mark since we had last been seen. Even though this annoyed me, I didn’t stress too much. Awesome Endo/CDE were always accessible to us during this time.

Finally the day of our appointment arrived. We were met with tons of new patient paperwork. Then we started through the process of appointments. After what seemed forever we finally met our new Endo. There was no getting to know you, there was no personable discussion with my child. The first thing he discusses with us is that her A1C had gone up 0.5. The number was actually still respectable. We expected that and in all honesty, we were ok with it after the stress of a move, new school transitions (recess before lunch was difficult for us to figure out how to tackle) and we were doing it all on our own. I said he discussed this and that really isn’t the truth. A discussion to me involves a two way discussion. In actuality, he lectured us about the long term damage, causing tears to form in my daughter’s eyes. He then started to demand that we enroll in a pump class. I explained that we had been pumping for 2.5 years and I wanted to know what was taught in the class. I wasn’t closed minded to attending, but it would seem silly to waste time, insurance charges, transportation expenses to attend something giving information that we most likely were already utilizing. He was adamant that we were doing our child a disservice with her A1C. I tried to explain that we have been looking at patterns and do not see where we can make changes. He continually dismissed me, refusing to look at the logs I had printed for our visit. Finally he relented and glanced at the papers, barely looked back up and said he didn’t see any patterns either. Just leave them as they are and we will revisit it at her next appointment. Muttered again about pump classes and told us the nurse would be in to finish the appointment.

What do I wish they would have seen with that experience?

That I am not an idiot. At the time of the appointment, we had just passed the 3 year mark of living with diabetes. We had been pumping for 2.5 years. My child is sitting in front of you, she is a silly girl, happy and healthy. Most of all, she is alive. I’d successfully kept her alive for those 3 years. Don’t lecture me on her A1C if you can’t offer advice on changes because you don’t see a pattern either.

Get to know your patients. Do not act like I need remedial training when you haven’t taken the time to even get to know us or the unique circumstances that sets us apart from other families. Not saying that we’re more different from other families, well maybe I am. Because EVERY family/person living with diabetes has individual needs. It cannot be compartmentalized and one way does not work for all. It doesn’t even have to take a long time, I know you’re busy and see a lot of patients. But when you walk into the exam room, you should establish a trusting baseline relationship with your patient/family. Bedside Manner 101.

My child is a person. Don’t talk like she isn’t in the room. She is the one who lives with this disease. Right now is the time to act like you even care and that she is more than a paycheck. Treat her with respect and help us by acknowledging that she is important and not just diabetes.

Answer my questions. This is especially when you have a new/transferring patient sitting in front of you. If I ask about your sick day protocol, don’t tell me I need a class. No, I just need to know how it works in your practice. If I ask about accessibility, I’m not asking because I want to call or email all the time. If I do call or email, it is because I need help. Don’t act shocked that a 72 hour turnaround time is not acceptable to me.

That I’m not afraid to fire you. I left that appointment in tears. And then I got angry. Plan of attack formulating in my head. First action, get appointment with PCM to get referral changed. To who, I didn’t know, but I didn’t care at that point, I was never going back there.

And we didn’t go back there. Ever. We were lucky that our previous Endo was still available to us under our insurance. The only downside is that we would have to travel 270 miles each way for the appointments. Travel expenses, every last penny of them are worth the quality and humanized care that receive at our destination.

To the place that acknowledges that:

  • Drilled into us “Kid First” since day 1.
    • You have candy for breakfast on Easter Sunday? Let us show you how that can still work.
    • She loves cotton candy? Let me show you a trick on how to eyeball a carb count
  • Treats us as a partner in her care
  • Takes into account that we are trying the best we can and we’re not perfect
  • They don’t claim to be perfect either but they never stop trying to figure things out WITH us
  • Burnout happens and it doesn’t result in a negligent label. Instead it is ’email us when you need us’ because…
  • We’re here to help. I think this should be top rule for any health care provider.
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