LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Friday, November 09, 2007

A mission for the tribe (the D-tribe that is)

I was trying to get my tie on right. First the front was too long, falling well over my belt. Then the back was too long, dangling down, showing behind the wider front. Now the knot is too large. Now too tight to slide up under my collar.

As you can see, I don’t wear a tie very often.

I have a flash back to junior high school, when I stood in front of my mirror with my old Cub Scout manual on my dresser. I had been invited to a De Molay meeting (a youth auxiliary of the Masons). My father had been a member, so it was a honor of sorts. Grandpa was a 33rd Degree Mason. I never stuck with it, but I do remember trying to get the tie on right. When I eventually got there one of my friends told me, “Thank God for my Cub Scout manual, I’d never figured out this tie…”

I don’t have my Cub Scout manual anymore, but I do know the theory by heart. It’s just putting into practice that’s the problem.

At work, my boss requires us to “dress down.” Jeans and casual shirts are the rule every day of the week. It is a poor area, he doesn’t want to risk creating a class barrier by how we dress. I’ve noticed, however, that many of our patients do put on their “Sunday best” to come to the clinic. They must think we are a bunch of slobs.

But when I’m out in the rest of the world representing the clinic I always wear at least a sport coat, and often a tie. I figure if you are at the capital they really don’t know what’s happening out in the rest of the state.

On this day I carried my title from the clinic, but I was actually representing all of us. Let me tell you the story. Here in New Mexico, like more than half the states in the union, diabetic children are NOT allowed to carry their own testing supplies or insulin. They are kept locked up with the school nurse.

OK, so you feel a hypo coming on. Now you need to walk to the school nurse’s office. Seriously. And it gets worse. I know of at least one case of a remarkable teenage T-1 girl. She was Dxed at age five. Her mother tells me she’s never given an insulin shot to her daughter. The kid insisted on doing it herself from day one. Then, years later, comes high school. Where the powers that be take this perfectly self-managed child and set her years back by forcing her to get her shots and tests from the school nurse.

Now let me tell you some things about school nurses. Over worked. Under paid. Under staffed. Not, generally, experts in diabetes care. They are the first group who will be inundated by the rising tidal wave of diabetes.

Many of them, I’m sure, are wonderful people. I just haven’t met any who are yet. Their national organization is even worse. I can prove it.

An enlightened medical doctor in our state Department of Health, having become aware of the situation, decided that youth in our state need the protection of law to ensure they may test and self medicate, assuming they are sufficiently mature and capable of it. And if they are not, she wanted to create some sort of universal training for adult volunteers who could help out in the classroom: parents, foster grandparents, teacher aids, even the teachers themselves. Seems like a simple, good idea that benefits everyone, right? Wrong.

The school nurses fought this tooth and nail. It became an ugly, down in the mud fight. Does that surprise you? At first it did me, until the agenda of the school nurses became clear. They want a school nurse in every school. Who doesn’t? It’d be great if we could have a doctor in every school too. But the fact is, we don’t have enough teachers, books, or supplies, much less the money for more school nurses. But the school nurses see diabetes as a way to force in increase in their numbers.

They are bank robbers holding a pistol to the heads of our hostage children.

I was a charter member of the task force that tried to work out some sort of reasonable compromise between the competing interests. The ADA even got involved, their lobbyist told me she wasn’t afraid of the nurses, “I’ll fill a room with crying mother’s and they’ll look like monsters.” It got so nasty I dropped out. Yeah, chicken shit of me, but I didn’t have the energy. That was at the first of the year.

But then last week I got a personal call from the Doc who started it all. There was a public hearing on the law. Would I come speak? Of course. I had my assistant call and cancel and reschedule all of my patients for the given day. That night I got an email from the ADA, please come. Wear red to show your support.

Red? I thought we’d all agreed on UN Blue as our international color. What the hell, I got out a red shirt. It looked pretty good with the only sport coat I own that still fits, a rust colored micro-suede. Dark grey Dockers completed the ensemble. I really need another sport coat. By now everybody in the state who does anything in diabetes has seen me 20 times in this coat. Maybe I can find something on EBay……

Once I got the damn tie right I grabbed my traveling stainless steel coffee mug of home-brewed Starbucks and set off for the hour-and-a-half drive to the state capitol in Santa Fe. It is an insanely beautiful drive.

The hearing was lightly attended. I recognized many of the faces in the crowd, people who should be our friends, but were our enemies: the school nurses.

I sat in the back and bided my time. I listened to two parents, one grand parent, and the remarkable teenage girl I mentioned earlier testify. That was the extent of our voice. It didn’t look good for the home team.

Then the nurses started. To their credit, most of them supported the law—with some changes. Standing clearly, and loudly in total opposition was the state head of the school nurses organization and one other. The rest, I think, could sense how bad they could look had the absent press showed up. They circled their wagons around three issues: insulin administration and “assessment.” They also were against the non-licensed volunteers. They, to their credit, actually supported the part about letting kids test in classrooms.

Assessment is an important concept for nurses. It is a key nursing skill that takes time, education, and practice to develop, and according to our state’s nursing practice act can not be delegated. So far, I can go along with that. Also, we need to bear in mind that if a nurse delegates something to someone else and there is trouble, it’s her (or his) license on the line. They really tried to play up how complicated and dangerous administrating insulin was. Hmmmm…..

All of that said, I don’t think there is any assessment needed to administer insulin. What’s the current BGL? How many carbs? When was insulin last given? Was the child more or less active today than usual? These things don’t need to be assessed. These things are facts. Once any even moderately trained person has these facts, they can look at a plan drawn up by the health care provider that will instruct how much insulin to give. By the way, the proposed law states the parent has “veto” power over the selection of volunteers that are tasked to work with their T-Kiddo.

I waited until the very last to speak, seeing which way the wind was blowing, taking mental notes. When at last, the hearing officer asked, “Is there anyone else who would like to comment?” I rose and approached the microphone.

I introduced my self by name, title, and clinic. Then I told the hearing officer that I was also a Type-1 diabetic. “So today I speak with two voices,” I said, “both as a health care professional, and as a person with diabetes.”

I don’t recall everything I said, but I pointed out that my clinic served the population of 1,000 square miles with a small staff and that I could assure him that we had no shortage of diabetics. I told him I used trained volunteers in virtually every capacity with excellent results and that I felt the state would find persons with diabetes a willing, knowledgeable, and eager-to-contribute work force.

I told him that if we made some one who was experiencing a hypo walk somewhere else to be tested we’d be up to our asses in malpractice law suits, and deservingly so.

I told him that taking away control from the patient, at any age, was making my job harder. I told him that diabetes is a unique chronic illness where the ultimate outcome is in the patient’s hands. I told him that it was my job to teach those self management skills, and that anything that short circuited that process was a crime in my book.

I told him that well managed, there was no reason a diabetic can’t live to be 100 years old with great-grand children romping at their feet. But that poorly managed it will kill you most terribly. Then I told him my tiger analogy.

“The best way to think about diabetes if you don’t have it, is to compare it to a tiger,” I said. “You can live with a tiger in your house if you feed it, and groom it, and never turn your back on it. No problem, it can be your pet. But if you neglect it, and turn your back on it, it will pounce on you and rip you to shreds.”

I said that I respectfully disagreed with the nurses. Giving an insulin shot wasn’t rocket science. In fact, the vast majority of people who give or take insulin shots every day are not licensed medical professionals.

And then I was done and the hearing was over. I guess I did well. All the mothers came and hugged me. The teenage girl flashed me a “thumbs up” (thanks, kinswoman), and various doctors and non-school nurses shook my hand.

Then, my duty to our tribe discharged, I took off my tie and I went to Trader Joe’s for macadamia nuts.

8 Comments:

Blogger Colleen said...

Great job, Wil!

9:25 AM  
Blogger Lili said...

That's great, Wil!

I'm surprised they said it was a class issue. In my experience (in New Mexico and Arizona), people *want* their health care providers to dress up and seem authoritative. They *expect* a difference in class. But who knows.

12:13 PM  
Anonymous Anonymous said...

Way to go!

Kathy (araby62 on TuDiabetes)

1:20 PM  
Blogger RichW said...

You da man. Are you sure you don't want to run for president? This country needs more leaders with their head screwed on straight.

1:49 PM  
Blogger Kevin L. McMahon said...

Dejavu all over again. That's exactly how the congressional committee meetings went down in Austin on the way to Texas enacting similar legislation into law 2 years ago. Same arguments. Same nasty nurses (at least that's how they came off in the sessions - nice people otherwise I'm sure).

Keep the faith. Hopefully, NM will join a growing list of progressive State's who mandate lay caregivers beyond the school nurse (who in most schools is absent most of the time).

2:43 PM  
Anonymous Kelly said...

Thanks for being the voice in your part of the US. I waged my own battle against the school for my child. I told them it was crazy to ask a child to walk to the nurses office a thousand feet away in a different building over cement sidewalks. I sent them a letter that put them on notice, and said if the school did that, they would be held liable for any injury which occurs. The nurse lied and told me it was against policy. After a couple weeks of asking her for the policy, talking to the pricipal who was clueless, I finally talked to the district director of the nurses, who "researched the subject" and 2 days later granted the request to test, and treat or be treated in the classroom, or be transported via wheelchair to the nurses office. About 7 years ago there was a diabetes task force in this state which made recommendations. Very few have been enacted on a statewide basis. We still have no one to administer glucagon if the nurse is not at the game or away game.

6:17 PM  
Blogger Sandra Miller said...

Wil-

I've been lurking for a while-- still reading and enjoying your incredibly thoughtful, well-written posts.

But this one.

I just had to comment.

Thank you.

I've had my own battle with our local school district over putting a 504 plan in place for my son.

A battle I won... or so I thought.

Since Joseph started middle school this year, I've encountered resistance from our school nurse at every turn over protocols already agreed upon in his 504.

From testing in the classroom-- to Joseph being "allowed" to correct a bg in the 200s.

This post made me feel both inspired, and a lot less alone in what sometimes feels like a never-ending struggle.

1:11 PM  
Blogger Scott said...

Its ironic because in some of the so-called "progressive states" the reality is that there is no such thing as a school nurse, which help explains why the laws do not mandate such things. The fact is that most U.S. states will have a severe shortage of nurses in coming years, which explains why there are many exemptions in the immigration laws for nurses but the same exemptions do not exist for doctors!

For example, I grew up in Connecticut, and the entire school district did not even have a registered nurse on its payroll (instead they had a health aide, who had some experience working in a doctor's office, but no state license ... anyone could have done that job) which meant that it would be impossible to mandate a child do their testing or injections before the nurse, because there was no nurse to do this in front of!

I think all of these laws have noble intentions, but the practical implications are often far from what is intended. Anyway, thanks for your work on this. Maybe there will be reform after all!

3:15 PM  

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