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From Abby: Through the PWD and HCP Lens.

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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These things are always cold.  WHY?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?

Comments

I always come prepared with a list of questions for my endo. I also come with the attitude that I don't care if I have to wait an hour and a half. She's worth it.
Yes, bringing a few weeks of CGM data is good. I try to do that. Then also one needs to remember that doctors (especially good ones) are very busy, and that they are under the gun from insurance companies nowadays, too.) When I was first diagnosed with Type I, in 1972, I spent two weeks in the hospital. Insurance companies would never pay for that now, unfortunately. Your endo can help you, but did not cause your disease and so far cannot cure it. Plan to work as a team with your endo.

Great post! I was just thinking today about how I'm going to approach my next endo appointment after I commented recently in a diabetes365 discussion about hating the presumption of lying that's built in when endos don't ask for logbooks but rather download all your info directly from the pump, meter, CGM, etc. I decided what I'll do this time is download everything myself and have it ready to go for them (with things I want to look at highlighted somehow). I think just the step of downloading it myself and giving it to them will help me see it more as "us working together" than as "them checking up on me to see if I've been good."

I think what's missing though is the "why." As in, why do patients show up to an endo appointment with only a week's worth of data? The answer for me is that, well, I have a life. I want to be healthy and I want to find a way to give my HCP all the data she needs to help make informed decisions. But reality is that I have a job (necessary to pay for all this D stuff) and a famcily and things that just make it impossible sometimes to test when I should and log when I should. For example, my endo chastised me once because I wasn't testing at EXACTLY 2 hours after eating lunch. The reality was that my job just didn't make it possible. I was in meetings, running around, etc. I don't have the kind of job that enables me to step out of a meeting because I have to test my BG. That excuse may sound weak, but it's my reality.

I think what we need is endos who can meet us halfway. Maybe 2 weeks' worth of data is all we can muster, and sometimes we will have busy periods when logging at all is going to be impossible.

One thing I love about my endo is that she's good a piecing things together. I capture my BG data on my iPhone (using an app) and my pump. Sometimes, one is more convenient than the other, and she's always willing to look at both to help make decisions about my HC. No, it's not ideal, but it's the best I can do. For me, flexibility of my HCP is key to keeping me engaged and not as burned out as I might be otherwise.

Boy, the logbook thing. Is it everyone's bugaboo? Too many times have I sat in my endocrinologist's waiting room, transcribing all my BGs from my glucometer! How I wish, wiSH, WISH my PIng were compatible with my Mac. And my endocrinologist, who I love, hasn't asked for my BGs in many visits. Is that because I'm doing so well? Is that why I love her?

Hmmmmm…

I'm so glad someone else thinks the logbooks are ridiculous! Who in the world checks their blood sugars on the hour and can write that tiny?

Also as a student nurse (and diabetic of course), I would have LOVED to sit in on that meeting! It sounds highly fascinating!

For those of you who have problems with logbooks, I suggest the OneTouch UltraSmart. Obviously, if you're using the Ping, you probably don't want to give it up, but for everyone else, it's easy to use once you catch on. It gives you the option of putting in what time you ate (and the corresponding blood sugars before and after), how much insulin you took and which one (if you use more than one type of insulin), how many carbs/proteins/calories/fats you ate, etc. It lets you put in exercise, for how long and how hard, and the corresponding BG readings for that, as well. It lets you put in health, etc. It's the most fun techno-joy device I've ever had, and it helps me keep track!

I recently went out and bought one of those apppointment calendars that has time slots written in for each day and we have been using that to keep track of my daughter's bg's. (You know, one of those At-A-Glance things?) It seems to be working for our family because we turn to the week and just jot down the number in the appropriate time slot. Somehow, not having to write the time down helps, if that makes any sense? I also circle the day number at the top on the day we do a site change so everyone can see when we are due again. I find we have been keeping track of things in the monthly calendar too that may have an effect on bg's like swimming, or sites that fall out, etc. We've been using this for about 6 months and so far it is working great. Oh! And because the week is in columns, it is easy to look across the page and see if a particular time slot constantly has wonky numbers! I wish I had thought of this years ago.

abby, as a fellow nursing student almost-nurse with diabetes it's so great to read your stuff! been meaning to comment for awhile.
i feel you on so much of this. i have a lot of frustrations with my endocrinologist. and have also butted heads w her specifically around her inability to understand that someone could (and deserves) to be both a pwd AND a hcp. her suggestion when i couldn't follow her "rule" of not eating after 8pm due to not getting home from clinicals until 8 was that maybe i shouldn't be in a nursing program (mind you, i have a pump and was eating lunch and snacking, not like i wasn't eating all day or was skipping a snack to cover an NPH peak).

and the circling and critiquing/whying specific numbers. ah the interrogation. i should try your tip to circle my own numbers.

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