Diabetes police and diabetes criminals

#1

One of the common topics we’ve discussed many times here is the uneasiness and frustration we feel with our diabetes doctors and other professionals like dietitians and educators. We all have our gripes and I’ve certainly written rants about mine.

Stacey Simms, the Diabetes Connections podcaster, recently interviewed Steve Edelman, endocrinologist, founder of the Taking Control Of Your Diabetes (TCOYD) conferences and T1D (type 1 diabetic) as well. People with type 1, type 2, their loved ones, and diabetes health care professional all attend TCOYD conferences. They often have separate conference tracks that they attend but some presentations are done as one large group.

Steve commented that one of the favorite parts of his one day conferences is when patients, loved ones and health care professionals are gathered together. The facilitator then tells the group that for the next 20 minutes only patients will be allowed to speak. They are instructed to answer the question, “What do your diabetes health care professionals do that drives you crazy?” Only negative comments are allowed.

The Steve Edelman interview starts at 32:13.

Dr. Edelman sumarizes that patients complain about how little time they are allocated and some are only allowed to bring up one problem. They’re irritated by the criticism that they don’t check their blood sugar often enough or get labeled as non-compliant.

After that provocative 20-minute session ends (how can they fit that into 20 minutes??!), the doctors and other health care professionals are then challenged to answer the question, “What do your diabetes patients do that drive you crazy?”

The doctors, dietitians and educators let it rip with comments that patients often don’t show up to their appointments (moreso with dietitians and educators than with doctors), don’t know what medications they’re taking, lie about their glucose records, and fail to take ownership of their diabetes.

I think we need more of this kind of conversation. I don’t feel my doctors have acted like the natural health care allies that they are.

One of my biggest gripes is the unthinking and reflexive reaction my doctor will make about severe hypoglycemia risk based on an A1c number alone. Or they see a small percentage of CGM (continuous glucose monitor) data below range and jump to the conclusion that my risk of severe hypoglycemia is too high and I should therefore aim for a higher glucose average, long term complications be damned.

I write on this topic knowing the challenges clinicians face, including limited time and having the administrative burden exceed patient face-to-face time. I also realize that some doctors can overcome these embedded hurdles and still provide great care using enlightened communication. I acknowledge that these exemplary doctors exist but I think they are too few.

What drives you crazy about your doctor/health care professional relationship? What do you think we, as patients, can do to nudge that relationship in a better direction?

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#2

I know that the point of your post Terry was what drives you crazy and what can we do to fix it and believe me I’ve got so many complaints I could fill a book but I thought I’d touch on

For once my new endo that I started seeing in February is actually a health care ally :grin:. No chastising me about lows, no labeling me as this or that, willing to write my rxs as I need them as well as prescribing some of the out of they way things I use for diabetes management. Granted his staff isn’t very well trained and they are abysmally slow at getting his orders out to where they need to go but as long as I’m not having some sort of supply related emergency then that’s not impassable.

I think being patient is probably the best quality to make use of when dealing with our medical professionals, as well as knowing when you need to get on the phone to sort out issues. Lastly our strong opinions are vital to our well-being but some dr.s just don’t seem able to handle that sort of patient and those are the kind of dr.s you just have to move on from if at all possible. If the Dr you’re seeing is burned out or has lost their ability to empathise then there isn’t much you can do to fix them so move on.

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#3

I’ve read accounts like yours regarding a great doctor/patient relationship. I wish I could enjoy one like that but I have given up. As long as my doctor is tolerable and their office can handle the burdensome prescription load I represent, I conclude that that is good enough.

My competence dosing my insulin does not need any doctor help. I refuse to talk to dietitians since I’ve found disagreements on a fundamental level.

If I could write my own diabetes prescriptions, I’d be tempted to go without a diabetes doctor.

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#4

Oh I’ve had some terrible Dr/patient relationships and I wouldn’t personally rely on any Dr nowadays for dosing including the one I have now as I’m pretty sure I’m his only patient on Afrezza, but he is understanding and does make suggestions although my answer is usually “tried that didn’t work”. I think the main thing I like about him is that he respects my intelligence and realizes that I’ve had diabetes for almost 30 years, don’t have complications and my a1c is great. I must be doing something right.

One thing that seems to surprise most dr.s is how honest I am about my diabetes (As if they’re expecting me to lie to them). I don’t sugarcoat lows or fudge reports and dr.s expecting lies from their patients is just a product of people not trusting their dr.s to be their allies, which is a sad state of affairs for our dr.s and the patient.

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#5

I am a take charge kind of patient. If I have a medical problem of some kind, I research it before I see a doctor, so that I can ask informed questions. It is my understanding that most people don’t do this and prefer to just be told how to treat their condition. I don’t do well with a doctor who just expects me to sit there and not question what they are telling me.

Since I have been a type 1 for 60 yrs and have no diabetic complications my doctor doesn’t question my knowledge. I would promptly quit seeing a doctor who gave me any kind of hassle. I have never seen a dietician or a diabetes educator. I know it wouldn’t go well.

The doctors at the practice I use now talk with their patients for at least 30 minutes at each visit. My doctor is always happy to see me.

If I used an endocrinologist I don’t think I would be nearly as happy with the medical treatment I receive. The one time I was told by my previous doctor to see one, because she didn’t like how low I kept my A1c’s, I was not impressed with the full waiting room, their demand to turn over my monitor to look at my records and the feeling that I was just a patient and the medical staff were the experts. The endocrinologist ended up telling my previous doctor that I knew what I was doing and to leave me alone.

On the whole I don’t blame doctors too much because so many patients don’t have a clue about handling their diabetes, or they lie about their glucose levels or they just can’t understand the seriousness of the disease, because often the patient doesn’t start seeing complications for a number of years.

But doctors need to also show respect for their diabetic patients who are well informed and are taking excellent care of themselves. Excellent doctors realize and acknowledge that they can learn a lot from us.

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#6

I’m sympathetic with a clinician forced to see a parade of so many patients each day that we patients are seen as a blur. Having said that, I know I am not a typical diabetes patient. If the doc doesn’t give me the respect I deserve, I am put off.

I know I’m a tough patient, especially for the doctor who sees himself/herself as the definitive font of diabetes knowledge. In that situation, it doesn’t usually go well with me.

We once had a member with the screen name of “smile and nod.” I admire that tactic when it comes to getting what you want from a diabetes doctor. I much prefer hope over cynicism and sometimes it’s a struggle.

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#7

Don’t ask me why my BG was high last thursday at 2 PM. That is enough right there…

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#8

I guess my perspective is probably a little different from everyone else’s here. I struggled for years with a complete lack of control. The doctors refused to help, but told me every time I went that I was going to die before age 30. It happened with every pediatrician except my pediatric endocrinologist. They knew less about the disease than I did, had 0 empathy for a 12 year old taking care of this disease by herself, and gave the least helpful suggestions I’ve ever heard. Then, when I failed, it was my fault and I was told all the worst horror stories about going blind and having amputations. Even when I made improvement, it wasn’t recognized, and I still got the “you’re going to die” lecture. So, I just stopped trying. They made me believe that death was inevitable. Then when I turned 18 in high school and lost my pediatric endocrinologist, I lost the only ally I had, and it became a living nightmare to go to any type of doctor. Again, even when I made improvement, I got the same speech, up to even 5 or 6 years ago when my husband had to drive me to the gynecologist because my endocrinologist had reported a seizure I had in the middle of the night to the dumb, and then refused to sign the paperwork until I got a lower hba1c (the definition of diabetes police, and completely illogical). My hba1c was in the high 8s at the time, which was actually a massive improvement and one of the reasons I had a seizure. The gynecologist talked directly to my husband and told him if I ever got pregnant, I would have a baby born without limbs, or missing a heart or brain. She basically wanted my husband to police me. He got so scared he just said we’d never have children and it took me years to convince him she was just fear mongering (because again, she gave no useful advice, just laid out worst case scenarios). Even last year, I had an obstetrician tell me if my hba1c was above 5.6, I would have complications with my pregnancy.

Then, on the other side of the coin, they are trying to scare you guys into higher hba1cs because they want you to be afraid of low blood sugars. Its impossible to win with them. In my experience, less than 5 percent of doctors are actually supportive and not just judgmental fear mongers or overpaid prescription pads. I acknowledge good doctors exist, but they’re the minority. Nowadays, I prefer the overpaid prescription pad style of doctor because I just don’t need any more judgement in my life.

Sorry this was a really long rant, and I am seeing a therapist to work through my trust issues with authority, but my childhood was less than idyllic, and thinking about it gets me a bit worked up.

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#9

My experience with dr.s is for the most part similar to yours but I think the difference for me was in my mother not taking any b.s. from medical professionals. If they were being bad dr.s then we left and found someone else (We even moved across the state to be closer to dr.s that had a clue). I received all of those warnings too, I knew what dialysis was when I was 5 and the threat of amputation or blindness terrified me throughout my childhood. I’m pretty sure one Dr also told me I wouldn’t be able to have kids.

That kind of fear mongering is unconscionable especially to a child. We do need to know the risks of this disease but hammering the point rarely works, whether you are trying your hardest to be healthy or completely ignoring your diabetes.

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#10

There was a complete lack of support from pretty much everyone in my case. I remember one teacher threatening to give me detention if she saw me at the nurse’s office again. My mother during that time had developed an internet addiction because “dealing with me was so stressful”. Its honestly a miracle I survived. Part luck and part resilience, but I never imagined I could be 32 and pregnant when I was growing up, so I’m very grateful I kept going throughout it all. I have a lot to be grateful for now, and the experiences did make me pretty tough. I’m trying to focus on the positive.

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#11

Hear, hear!

#12

I think one thing which bothers me is that many seem to have no clue how difficult this is and how much it affects and messes up your entire life, and that it is forever. Another is how ignorant most are about adults having type 1. Not usually endos but even some endos don’t seem to understand some basic facts about this. I feel like I am dealing with a bunch of idiots when I have to explain that to them.

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#13

Maybe just me, but I take care of me, because I want too. I have never listened to food police and do not suffer them lightly. As I tell them if they want to run this train,

Get an autoimmune disease,
spend $300/ vial for liquid to stay alive,
stick yourself many times per day
worry about low and high blood sugar 24/7
keep the supplies updated and be sure you carry everything.

When you do that, guess what? You can run your diabetes without my interference.

I have yet to get any takers, or responses.

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#14

I like this.

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#15

hehehe, Terry. We are awful smooth diabetes criminals. I love it. https://www.youtube.com/watch?v=h_D3VFfhvs4

#16

I absolutely love the doctor I see concerning diabetes. He stays current and I love that about him. He also does not support a one shoe fits all view, and that I also love.

However, he is working at someone’s business place and they are pushing patients through quickly and I would hate to think that money is the driving force.

I hate this because sometimes I would have preferred to spend some more time sharing what I am experiencing, but instead, after about 5 minutes my doctor gets up with file in his hand. Drives me crazy!

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#17

Thanks Marilyn. I can totally relate to your experience. I too am informed about what is happening in my body. I research and self-experiment so much, that I turned all of those into a blog to give other people some hope.

I get more from the sessions with my doctor when I go informed. That way I understand better what he says and I usually have a list of questions/concerns.

Continued success. You are an inspiration.

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#18

Ahhh, thanks so much! Good for you for taking charge and sharing with others!

#19

I have a fantastic primary care doctor who has helped me improve my health over the past 4 years. I had cancer and a high risk pregnancy in 2011 and would have been happy to never have seen another doctor/clinic/hospital again.

A couple of years passed and I knew that I was not well, but I also knew that I wasn’t going to settle for mediocre care and treatment. By chance, I had to go to my doctor’s clinic for an employment mini-physical and she seemed so kind and mentioned she was taking on new patients if I needed a medical home. When my insurance went into effect I called to see if she’d take me on given my history and she said she was up for the challenge.

Together we are a good health care team. My appointments are a quick checkup, review of recent blood tests, and long discussion of what is and isn’t working. It is very interactive and she’s very invested in my technology, we discuss treatment guidelines, lifestyle choices, medications, etc. She says that my success has inspired her to be a better doctor for her other patients.

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#20

Thanks @Terry4 for posting the link. Mike Lawson also has a great YouTube session on the diabetes police.
And I have attended one of these TCOYD conferences where I was in one of these breakout sessions. And my take away from it was the lack of communication and understanding about where the other was coming from on both sides.
I have been so very blessed to have had some great doctors over the years. And while that first endo I had as a small child was the one that did all the mental damage to my psyche, the rest have helped to make me feel as normal as one can be with diabetes.
All my doctors are open to discussion on treatment options. All my doctors have seen me cry with the frustration. Some have seen the joy of beautiful babies. Some have seen the horror to my mental well being of losing a baby. They have all been with me through depression and success. And we have always come to an agreement on goals. We might not always agree but they have all realized that I am the one driving this car.
I do understand that most people don’t have access to many choices and have to settle. I also understand I am blessed to be in an area where there are so many options. I think video linking would be such a great idea for those who have no access. I wish you all had access to great care. Please know there are very good doctors out there and many do really care. Just keep the communication open. I had no problem telling one of my earlier doctors that I wasn’t testing as much as he wanted and why. So instead of yelling at me, we worked out how many I could do and which ones would give us the most information. But if he didn’t know where I was and I didn’t know which ones really mattered, we might not have been able to move forward. So I guess my thinking here is open communication and working on goals that work for the team.

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