Today starts the Children With Diabetes “Friends for Life” conference down in Orlando, Florida. (Or for me, anyway. Apparently, some of those families have been there for days, enjoying the sunshine and theme parks. I cannot wait to join them!!) While I spend the day traveling, Abby has some further insight on the TCOYD conference last month in Albany, NY. Her views through the lens of both a future healthcare professional and a patient makes for a poignant, and unique, perspective.
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At TCOYD a few weekends ago, the last session we attended involved both PWD and health care professionals. (My endocrinologist was in the room, which made me really proud.) Dr. Edelman and Dr. Polonsky facilitated a discussion where PWD could express their feelings about what frustrated them with health care professionals, and HCPs could voice their frustrations with patients. I cannot stop thinking about the topics brought up in this session. I felt a little torn. I’ve been a PWD a lot longer than I’ve been an HCP (I know I’m not official yet, but for the purpose of this post, let’s just go with it).
I’ve been through nursing school. I’ve seen the patients who aren’t compliant, diabetes notwithstanding. I’ve given information to people, explained it, answered their questions, only to have them tell the next nurse they’d never heard of it. It can get really frustrating to be on the other side of health care – the provider side. Some of the complaints from PWD could have been easily explained if they understood why the HCPs were doing what they did.
There’s been a lot of talk about the “red circle approach” lately, and I just want to clear things up a bit. I do it, with my kids at camp. It’s an incredibly useful tool in finding patterns of blood sugars that are out of range, so they can be fixed. That being said, doctors don’t tell you that. They give you the “eek, you’re always high at dinner… why?” question, and that feels defeating. My solution: print your own numbers and circle the ones you don’t like. That way it’s a useful tool to you on any average day, you’re in control, and you won’t get so mad when your HCP does it at your visit.
Conversely, there are patients who don’t bring numbers to their appointments (my last endo I showed up with three days worth of info on my pump, and a week of wicked random numbers on my meter … guilty here). How can we expect a HCP to provide quality care when we aren’t giving them any information to work with? Log books suck, they are small, messy, and don’t have the right boxes for the amount/times we check our blood glucose – but we have to come to a compromise. We at least have to bring some information we can both work with.
Oh, and another thing – that one HCP who said “I get up at 5 am to exercise every day, I just don’t buy it when my patients tell me they don’t have time to exercise.” To you I say this “Come talk to me after you wake up with a blood glucose of 37mg/dL at 2 am, over treat because you feel like you’ll die if you don’t, then see a blood glucose of 285 mg/dL at 5 am when you wake up for you run, and let me know how that works out for you.”
Overall, I think this session went really well, and the doctors leading the discussion made a lot of good points. It definitely left me thinking about how I’m going to treat patients (even those without diabetes) and how I’m going to approach my own, personal future doctor visits. I just think that sometimes when we’re frustrated about something, we need to take a step back and try to figure out why it’s happening, and what can we do to fix it.
And if you ask your doctor to please use a highlighter instead of a red pen, I’m sure he/she will accommodate. Makes those circles look a little friendlier. 😉
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Having just had my endo appointment last week, I’m left wondering how I could have been a more empowered patient. (And by “more empowered,” I mean “Could have brought more than a week’s worth of blood sugar logs.” Guilty here, too, Abby.) What do you wish you could tell your doctor in efforts to improve your patient experience? And what, as a patient, can you improve on to help your doctor? How can we make endo appointments less eh and more yay?