It never fails to amaze—and shock and appall—me when a person posts a question on the Insulin Pumpers mailing list asking how to operate a pump or what to do about one problem or another; questions that indicate his lack of training.
While some are benign (e.g., “what do I do with the pump during sex?” or “I’m getting married; where do I hide my pump?”), others are not so harmless: “My numbers have been running high for two days. What do I do?” for example.
The answers to the first two are easy enough: Detach during sex, put it under your pillow so it won’t get embarrassed, or forget about it; it isn’t going anywhere. Or, in the second case, clip it to your garter, have a pocket sewn into your slip, or even hide it in your hairdo (as one bride is said to have done).
But the factors that contribute to hyperglycemia (and therefore the answers on how to deal with it) are varied and can include having bubbles in your tubing, a bent cannula, bad insulin, an infection, and more.
Where, I ask myself, are these people’s diabetes teams (albeit more for the last question than for the first two)? Did they not get training, during which trouble-shooting is generally discussed? Is there nobody on the team who cares, or is knowledgeable enough, to help figure out what the problem is and to assist in fixing it?
It was hardly surprising to me, therefore, when a doctor at the U.S. Food and Drug Administration (FDA) reported last month that 1,594 injuries and 13 deaths among children and adolescents on the pump had been collected by the agency over a 10-year period.
According to an editorial by Dr. Richard Hellman, immediate past-president of the American Association of Clinical Endocrinologists (AACE), “The most common single issue was lack of education and, neither the patient nor the responsible adult knew enough about how the pump worked to avoid the injury or death that resulted. Although there were some cases due to mechanical malfunction of the pump, most problems were the result of human factors involved in the use of the pumps.”
And, he added, injuries and death related to insulin-pump usage are likely not confined to children and adolescents; they extend to the adult population, too.
“Unfortunately,” he writes, “the FDA has not yet provided similar data regarding the numbers of serious injuries in the larger group of pump users, adults who are using insulin pumps.”
In addition to a lack of education, Hellman cites lack of support in emergencies, the increasing commonness of inadequate insurance coverage and the complexity of the newer pumps.
“A continuing problem is that the education, both initial and continuing, and the medical support to deal with the specific problems and needs of pump users, is neither being provided nor paid for. As a result, we have a patient safety problem that may not be the pump itself, but a systems problem, that is, a failure of the system of care for pump support,” he adds.
Who is responsible for the lack of education? The medical community? The insulin pump industry? Us?
Before I got my first pump in 1998, my clinic required me to undergo a screening process to determine the level of my diabetes education and whether I was emotionally and cognitively able to handle an insulin pump. Had I not passed the knowledge portion, I would have received the necessary education before getting approval to seek a pump. Had it been determined that I could not emotionally or cognitively handle a pump, the approval would not have been given. After I got my pump, I was required to attend a training session, then do a saline trial before putting insulin in my pump.
Had I not been required to go through training, would I have done so? Maybe not. After all, I can read the manual. I can watch a video. I can figure it out, darn it!
In retrospect, I don’t know what I would have done without the button-pushing, set-insertion, trouble-shooting session that included me and my husband (yes, they required that he attend, too), plus a team that consisted of an educator, dietitian, pump trainer and others who filtered in and out of the room. I don’t know how I would have reacted to starting out with insulin instead of a saline trial that allowed me to make the inevitable mistakes without consequence.
After I “went live” with insulin, I was in daily contact with my pump trainer as she helped me adjust my basal rates and determine my insulin-to-carbohydrate ratio.
It’s beyond my ken how a medical professional can approve a pump for somebody and just turn that person loose with no support.
I did not get training on my second pump. The pump company had a fit, but my endocrinologist determined that I had been pumping for more than four years at that point and, while the new pump was a different brand, it didn’t do much more than my old one.
For my third—and current—pump, I asked for training. So many features had been added to insulin pumps in the five years since I began using the last one that I knew I needed to sit down with somebody and learn how to operate it. I got a lesson in the basics and, six months later, I’m now ready to meet with the trainer again to go through some of the more sophisticated operations.
In other words, I’ve finally matured and know that getting the advice and support of an expert is in my best interests.
It’s up to us to insist on proper training and support if it’s not offered to us. Don’t be bashful: It’s our health and our well-being and nobody cares about that more than we do. We are the ultimate determiners of what is best for us.
AACE is in its third year of an annual program for physicians who have chosen a specialty in endocrinology. “They are taught how to care for patients on insulin pumps, how to protect them from harm due to pump malfunction, and how to improve their patient’s skills in using an insulin pump safely and well,” Hellman writes.
It’s a good start. Hopefully, the program eventually will be offered to all physicians who are likely to be involved in pump therapy.
And for more information about getting trained to use an insulin pump, check out my article “Pump Training: Getting Off to a Good Start.”