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Diabetes Police and Diabetes Criminals.

At TCOYD, one of the sessions I attended was about Diabetes Police (Health Care Providers) and Diabetes Criminals (People with Diabetes).  And I was a little taken aback by the title of the session, but we used it to our advantage when we walked into the session a few minutes after it had already started.

"Okay, we see a few late stragglers in here.  It's not like they had to be on time or anything," Dr. Edelman quipped from the front of the room, giving us a smirk.  

"I'm sorry we're late.  But what do you expect?  We're the criminals, man!"  I shot back at him.  And the crew of us "criminals" took up the last few rows, our smart phones at the ready to Tweet out the best of the session.  (We were the total nerd row.  :) )

The charismatic team of Dr. Bill Polansky and Dr. Steve Edelman were running this session, and it was packed with both PWDs, caregivers, and medical professionals.  Bill and Steve took to the white board, asking first for complaints that PWDs have about healthcare providers.  The list that was compiled ran the familiar gamut:

  • HC providers are always late
  • They don’t work together (one doc may recommend a treatment that contradicts a specialist's recommendation for another condition you may be living with)
  • Docs set unreasonable goals
  • Patients are blamed for blood sugar numbers (the whole "good numbers/bad numbers" discussion)
  • Patients want positive feedback, too, not just the negative stuff.  (Stacey brought up a good example of her most recent A1C being the lowest she's ever achieved, and her doctor said, "Nice job!!"  It feels good to get patted on the back when you deserve it.)
  • Docs say that they don’t have enough time to answer all the questions
  • Audience member:  “[My blood sugar numbers were] creeping up for a long time, but ‘all of a sudden I was diabetic.’  Where was the preventative measure to bring them down?”
  • One patient summed up the "seven minutes we get" sentiment with this statement:  “It’s so hard to believe he’s paying attention because his hand is always on the doorknob.”
But it wasn't all patients ranting about healthcare professionals.  The HCPros had their time to voice their frustrations, too:
  • Insurance companies actually grade us on the number of diabetes patients that make it “to goal” – regardless of the advancements that patients make, even if they don’t hit “goal.”
  • One doc asked:  "Why can’t patients 'get to the point' and bring the most diabetes-related issues to the table?  I want to help, but I can't help with every issue they have."
  • Hearing the statement “You don’t know what it’s like to have diabetes.”  Hard to make improvements suggestions because they aren’t taken seriously.  (“I am an RN and my son thinks I can’t prick his finger, but his girlfriend can prick his finger.”)
  • “I ran out of my meds.”  Patients need to remember to renew/order/take their medication.
  • When patients don’t update their medication list.  “You know what I’m on.”
  • When patients don’t know their own A1Cs
  • “You never told me I was borderline diabetic.”  Frequently, patients aren’t very honest about what they’re eating.    (Bill:  “So they’re also liars?”)  Going on another medication costs too much, they don’t want a second med, etc.  (Bill:  Jokingly points to the word “idiots” on the sign.)
  • Patients make up numbers on their logbooks, but the downloaded blood sugars form their meters tell a different story.
It was a good natured discussion, but some important points were raised by both sides.  It's not just the PWDs who are grappling with the healthcare system - doctors and nurses and CDEs are tackling issues, too.  "We're graded on how many patients we have that make that goal [the A1C target set by the American Diabetes Association], even if the patient has made tremendous advancements towards good health."  (This issue resonated for me, because I've always struggled for an A1C under 7%.  That pre-pregnancy goal took me a long time to achieve, and I conceived my child at an A1C of 7%.  It dropped immediately and stayed very low and steady throughout my pregnancy, but for me, a goal of 6% pre-pregnancy was near impossible for me to hit without harrowing lows.  My doctor and I had to take the blanket recommendations into account, of course, but we also had to tailor goals to my individual diabetes needs.)

Kelly Close's awesome shirt.
I want this tattooed on my face.

The most refreshing moment of the session was near the end, when Bill took the microphone and offered this story as almost an aside.  

“I realized I’ve told patients to keep 3 days of food records, but I’ve never done it, myself.  So I tried it.  And I lied.  I lied on my food record, to myself.  I was like, ‘I ate one Oreo.’  But I ate a whole sleeve of cookies.”

The doctor/patient relationship is just like any other - filled with dissenting opinions, moments of high triumph, and personal emotions.  Living with diabetes, our disease requires our detailed attention every moment of every day.  My hope is that healthcare professionals left this session understanding that their patients are more than their A1Cs, and that patients walked away knowing that healthcare pros are people, too.  And that there's a way we can meet in the middle and improve our diabetes health.

Comments

Thanks for this great recap! And for the photo of the t-shirt. That's great!

When I stopped fibbing (I won't go so far as to say lying) to my doctor, my health improved considerably. He was able to treat my diabetes (and me) from a realistic standpoint, warts and all, and I began to get better. Better at feeling better, better at logging because the numbers were better, better at communicating my real concerns. What made me stop fibbing? My doctor, who spent years reminding me that numbers are just numbers, tools really, not a reflection of my personal worth. I got just the opposite from my first endocrinologist, and it stuck with me for years, much to my detriment. My endo is ALWAYS late, but every patient in the waiting room knows why. It's because he will always take just a little more time with someone who needs it, and that has included each of us from time to time. We only with his schedulers would finally get hip to that fact!

That was my favorite session at the TCOYD I went to last fall. I accidentally sat on the HCP side b/c I slipped in late, too. I thought it was really cathartic that we all got to complain about one another publicly. LOL

oh my gosh, I NEED THAT SHIRT! what a great session.

I wasn't sure what to expect going into this seminar other than knowing from the morning that Bill and Steve would be excellent and engaging moderators. I think it said a lot about both sides of the issue when, in the end, it all came down to both sides wanting more time and more communication.

So glad I was awesome enough to be part of the nerd row :)

Interesting post; thanks Kerri! It is so easy to get frustrated when you know you aren't getting the care that you need. But you are right, docs are people too. Now that I have a true team - I'm off to write my Endo and CDE thank you notes!

...one Oreo... yeah right!!! :-)

I think I would enjoy listening to Dr. Polonsky and Dr. Edelman present on ANYTHING. But this topic sounds perfect for them.

And I love Kelly's shirt too. I'll go in on the tattoo with you. :-)

This is really interesting, and I want to thank you for sharing this. I am in the process of finding a new endocrinologist since I moved, but I just don't "feel like it." I was diagnosed at 3 years old, and had the same pediatric endocrinologist until I was 19 years old. I haven't felt the same about the next endocrinologist, so finding another new one just doesn't sound appealing because I have such a high standard to compare a new one too, and a different system, that I feel no one can measure up.

I LOVE that the doctor lied on his food logs! Thanks for sharing the story!

This really was a great session and like Ashley said, it pretty much boils down to all of us wanting more time and better communication. It was very informative to hear from the medical professionals point of view and even more interesting that there were a few individuals that had a role on both sides. And thanks for the mention :)

I want one of those shirts!!

it saddens me to hear they are graded on numbers of 'normal' A1cs without taking into consideration that tight control raises the risk of serious (intervention-needing) lows. Insurance companies need to catch up on that concept.

As an aside, I saw the TV ad for Buried last night during the Top Chef finale!

how can i get one of those shirts?!

When I was totally honest with my food log my Endo asked me "What is your psychological issue with food?" Wha..WTF? I have Diabetes!! Jeez so much for honesty.

I want that t-shirt. I am always telling my son, I can eat anything but I choose not to and eat lo-carb.

I NEED that shirt! :) Great post!

Thank you so much for this post. I'm glad to know that conversations like this take place so that both sides can learn from one another. And I am SO getting that shirt for my son!

Where can I get that shirt?!?! I need one!!

Kerri, thanks for an excellent summary of the session. I think I'm going to make copies of Kelly's shirt for myself!

Great post - I'm a huge fan of the Edelman/Polansky combo! They're both local to San Diego and I know them well, And what's most important is that they facilitate these important dialogues so that we can actually make the HCP/PWD relationship better. The fact that Polansky lied on his own food log totally brought it home! It's hard being so damn accountable all the time with this disease!

I love that the doc was tempted to lie on his food log. Keeping a log really makes you get serious and think about what you're eating (or giving your kid)! I eat "one" oreo ALL the time! LOL!

:O)

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