A Good Relationship with Your School Nurse Pays Off in Dividends

Laura Plunkett

| Jan 1, 1970

Because we have good health insurance, my son sees his endocrinologist twice a year, his diabetes health educator twice a year, and his nutritionist once a year. Meanwhile, he sees his school nurse one to three times a day. As you know, this relationship can make a difference for the rest of a child's life.

That is how I begin my talks when I am speaking to school nursing groups.

Then I ask, "How many children with diabetes do you have in your care?" and I start counting. "One? Two? Three? Four?" When I first did this several years ago, nurses stopped raising their hands at around four. At my last diabetes conference for the Massachusetts School Nurse Organization, several hands were still up when I reached seven.

School nurses are not only regularly interacting with our children, they are also increasingly in charge of many children. Some of these children have pumps, some have continuous glucose monitors, some have oral medications, some have very involved parents who want a phone call every day, and some have parents who don't answer the phone.

At the same time, school districts are cutting costs by reducing school nursing hours. In California, some nurses are responsible for as many as 5000 students. If your child has a full-time school nurse, you are lucky.

This nurse-student relationship can be a profound support for your child. Over the years, Danny has had three school nurses, and in each case, he had a strong ally. His school nurses reviewed his blood sugar numbers with him every day. They reminded him to test when he forgot. They checked with him before gym and sports, and they helped his teachers understand his disease.

I benefited as well. When Danny had a night of high blood sugars, I could call his school nurse and know she'd keep an extra eye on him. If she was worried about his numbers or needed more supplies, she knew she could reach me and that she had my support. Our school nurse became a central part of Danny's medical team.

Over the years, I have spoken to school nurses who have trouble with some parents. "His mother calls many times a day and always thinks I'm doing something wrong." "I ask him for more supplies, but he won't bring them in." "They send her in with cookies and a Snickers bar," or "Their child comes in every day with sky-high blood sugars, and they won't do anything about it."

When parents are unhappy, their complaints are different. "My son's school nurse doesn't know a thing about diabetes." "Our school nurse hovers over my daughter. She doesn't let her do anything herself." "I never know which nurse will be in charge or if anyone will be there, so I have to do most everything myself."

It helps to speak to nurses about the parenting experience. I remind them that approximately 20 percent of parents have full-blown post traumatic stress disorder during the first year after diagnosis. Many are anxious or depressed; others are financially stressed or exhausted from broken sleep. Some parents cope by worrying and trying to control things; others end up checking out. Mostly, I talk about the need for communication, for compassion, and for building trust. I recommend one-page medical handouts, face-to-face meetings, and a sense of humor.

With parents, I flip the coin. Many school nurses are spending their own money to buy Band-Aids and Kleenex. They eat lunch at their desks with children coughing on them. For a very low salary, they drive madly from one school to the next and stay late to do paperwork. There is very little time to read up on the latest diabetes technology or decide how much responsibility a child should take for his or her care. Still, I recommend the same things: communication, compassion, building trust, informational one-page handouts, face-to-face meetings, and a sense of humor.

The benefits are worth it. For parents, a strong, supportive relationship with your school nurse can greatly relieve your anxiety, help to improve your child's A1c, and be your liaison at school. Like a garden, this is a relationship well worth tending.

* * *

Tips for Working with Your School Nurse
Prepare an emergency sheet with your child’s photo, your phone numbers, and your doctor’s protocol for treatment of low blood sugars.

Develop “school orders” and plans for after-school activities with your child’s physician and have them faxed to the school nurse in advance.

Arrange a meeting with your child’s nurse before school starts to review the emergency sheet, the school orders, and the Section 504 plan.

Leave time for the nurse to meet with your child as well, so they can decide upon a daily routine that works for both of them.

Ask your school nurse to facilitate a meeting with your child’s teachers and athletic coaches each year. Give them the emergency contact sheet and an introduction to your child’s diabetes routine.

Keep in mind that school nurses are mandated to have physician’s orders to adjust insulin doses and carb ratios. Be prepared to coordinate communication between them, should your child require changes in treatment.

Calculate snack and lunch carbohydrates ahead of time when possible. This makes insulin calculations and nurse visits quicker.

Check to see whether your school nurse has “diabetes lunch bunch” opportunities. These gatherings give students time to share school experiences and learn from one another.

Meet with your school nurse at year-end to review the year and plan for any upcoming school transitions. 

* * *

Laura Plunkett is the author of "The Challenge of Childhood Diabetes: Family Strategies for Raising a Healthy Child" (available at challengeofdiabetes.com). As the mother of two teenage children, she offers her best advice on navigating the joys and challenges of raising children with diabetes. Laura can be reached at lauramplunkett@challengeofdiabetes.com.

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Categories: A1c Test, Adolescent Boys, Adolescent Girls, Blood Sugar, Community, Diabetes, Diabetes, Insulin, Kids & Teens, Type 1 Issues

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Posted by Anonymous on 30 September 2009

Wow...I live in a country where we don't have such support. You are so lucky! When our kids are at school, we have to depend on wonderful but non-medically trained teachers and on the kids themselves which puts a lot of pressure on young shoulders. These school nurses seem to be a major help and support to families of children with Type 1 and other conditions.

Posted by shosty on 1 October 2009

Our daughter, who was diagnosed at age 4, is now 19 and well out of public schools. We did all of the things that Ms. Plunkett lists, for many years. There are a couple of problematic issues with schools and school nurses, that I would like to elaborate on.

1) School nurses are not allowed to train lay staff (teachers, coaches, drama directors, and so on) to do glucagon, according to state DPH regulations. That means that, if we are lucky, the nurse will let parents train staff, and if we are not lucky, noone will be trained at all.

In addition, parents do not seem aware that EMT's cannot administer glucagon. Their sole purpose is transport, for a severely hypoglycemic/unconscious child. Paramedics can address hypoglycemia with IV's, but EMT's cannot.

I would also like to elaborate on the fact that school nurses cannot adjust insulin doses. Our daughter has other medical illnesses and her blood sugars can be extremely variable, and sensitive to changes in her body from those other illnesses.

Doctors are not available that often. Our daughter's good care depended on very frequent adjustments, and a rigid protocol for insulin based on just blood sugars (leaving out illness, exercise, stress, and any other factors that made things rocky) was not only ineffective but even harmful to her.

We tried providing a protocol that was more flexible, with a note from the endocrinologist saying that rigid protocols were harmful for her. The nurse still could not make any adjustments.

This situation resulted in the school nurse calling me EVERY HOUR for years, and, later, when our daughter was older, the school gave her a cell phone and she called me as well. They permitted me to adjust insulin doses and tell our daughter directly (via the nurse bringing a phone and, later, the cell phone) what insulin to do.

Needless to say, this arrangement was less than optimal for anyone, me, our daughter, or the school.

Ironically, in the one year we had an aide in school, things were better. The aide had no license and was not bound by DPH regulations herself. I will never forget the day the aide said, "You go ahead and go Christmas shopping and I will take care of everything." One day in 14 years.

I don't know what the solution is, but if a rigid insulin protocol works for your child, consider yourself, your child and the school to be lucky. It mystifies me. One day, one unit would work, and on another day, two units were needed, for a given blood sugar. Things were intuitive, not always scientific, and a simple correction factor was not enough for good care.

Posted by Jerry1423 on 1 October 2009

Wow ... times sure have changed since I was a kid. I have been type 1 for 34 years, since age 14.

When I was in high school I needed to take one insulin shot in the morning (at breakfast) and one at supper. I never needed to take them at school.

With that said one may wonder how good of control I was in ... I swam, lifted weights, and sometimes road my bike to school (7 miles). If we would have had the testing that we do now things would have been much better.
I was in darn good control of myself.

The funny thing is that if someone came up with a way to take only two shots a day it would be looked at as an advancement - and that's the way it was back then.

I am so thankful that I did not have to take any shots in school, because that would have been very hard on me.

I still had a good relationship with my school nurse, because I can recall walking into her office a couple times all sweaty and shaky, and needing something to eat.

Posted by Anonymous on 1 October 2009

I don't know where you are from shotsy but you make some very broad generalizations about school nurses. I am in a state where I am able to train teachers, aides,coaches, secretaries,etc. to administer insulin and glucagon as well as other life saving medications for other illnesses students at school have. This all depends on the state Nurse Practice Act in a particular state. But even if in your state your school nurse was not able legally to delegate these nursing functions to unlicensed staff I find it interesting that you criticize her for "calling you every hour" to determine your daughter's insulin needs rather than consider that the nurse went out of her way to help keep your daughter safe at school, understanding how labile her insulin needs were, when I know how many other responsibilities to many other students she had as well. I sometimes wish parents would spend as much time advocating for school nursing services as much as they do complaining about what school nurses can and can't do. There is a reason that managing insulin, especially in a child such as your daughter whose needs seemed to change by the hour, is considered a "nursing function". It can literally mean life or death for a student if mismanaged. School nurses are highly educated and trained professionals who understand diabetes and its complexities and appreciate the fine tuning it requires to keep a student in a safe range and one in which the student can learn to their full potential. You say you had one good day in all the years your daughter was in school when an aide was with her. I certainly don't know the specifics of this situation but I can say I train many fine unlicensed people to care for students with diabetes yet no matter how well I have trained them (in the few hours, if that, I am "given" to train them)I shudder when I have to relinquish to them the function of administering insulin at school. There is no way they can become proficient in their understanding of all that is involved in treating diabetes with this brief a training and so I rely on them to be in frequent contact with me as often as necessary to answer questions and advise them on care. They have detailed written health plans to follow too but need my expertise as well to handle those unusual situations that always seem to occur in school. Most aides I have trained have stated they are also uncomfortable with the responsibility of counting carbs and calculating insulin doses accurately, etc. Even their ability to recognize low blood sugar symptoms isn't always very good and knowing when to administer glucagon may also be in question. I had a school secretary I trained whose diabetic student's blood sugar became low while on the playground to the point she was unable to talk and was falling in and out of consciousness. Instead of administering her glucagon and calling 911 as she was trained and as the emergency plan directed doing, she panicked and tried to call the mom but wasn't able to immediately reach her and by the time she did she was so panicked the student's mom had to calm her down before even giving instructions to treat her daughter. She also didn't contact me even though she was trained to do so and I am always available on my cell phone, which I carry no matter where in the distric of 6 schools and over 3400 students I am responsible for I might be. Fotunately, the student was able to be treated and did fine but knowing how she handled the situation scares me, not onl;y for the student's well being but because my nursing license is on the line as well. Unlicensed aides with no medical background and a bare minimum of training are not the answer to providing adequate care to students with diabetes, seizures, life threatening allergies or any of a multitude of other illnesses kids come to school with these days. I wish parents were as outraged about the lack of safe, professional nursing care in schools for their kids as they would be if their child were being taught by unlicensed teachers' aides!

Posted by shosty on 4 October 2009

Whoaaaa! Nowhere did I criticize our school nurses. We have excellent relationships with them. When my daughter was 4, I went to town meeting with school officials and got the town to vote for a full-time nurse, and when our daughter was entering high school, I researched with our state health dept. and found a grant to pay for an additional nurse, and that aide, for our entire school department. I have never been an idle complainer, and have always advocated for our nurses.

I also convened a big meeting with regional Emergency Medical Services Administrators, local EMT's, paramedics, fire and police, at a public selectmen's meeting, and wrote several articles as well, on the problem of EMT's not being allowed to do glucagon. While I raised the issue with JDRF, parents were not responsive to the issue. Parents got Epi-pens and asthma rescue meds accepted as being allowed for EMT's, and I still hope parents of kids with diabetes will fight for this issue. Wisconsin allows it already.

Anyway, in my post, I was describing legal problems that exist in some states, that prevent the nurses from doing what they might like to do, for a kid with diabetes. If you tell me your state, I will call your state DPH and find out if it is legal in your state for you to train lay people on glucagon, and if it is legal for you to make adjustments to insulin dose protocols on your own. I would bet anything that some of the things you are doing are against regulations.

Doctors are not that easy to reach, and it is impractical, impossible, to make adjustments frequently with a doctor's permission, as regulations require. What I described was the only method possible for our daughter to have the flexibility in her regimen that was required for her health: that I do it, by phone. The nurse put the cell phone to her ear, in class, and I told my daughter what to do.

This has nothing whatsoever to do with the nurse's skill, or with our relationship with the nurse.

What I was saying is that the nurses REFUSED to do things for my daughter, or train staff, because they were legally not allowed to. The point about the aide was that the aide was not covered by these same regs so, ironically, had more freedom to do things.

It should be mentioned that the American Diabetes Association has advocated aides in the schools for diabetes care, mainly because it is unrealistic to think that nurses can be provided or be available as much as needed for this purpose. Tight control can take as much as two hours' time
per child in a school day, and no school will pay for a nurse to spend that kind of time on a child with diabetes.

I have done a lot of reading of manuals for school nurses on "tight control," which, in 1993, was proven to improve long-term health and short-term well-being, including learning. The fact of the matter is, that with tight control, comes the need for very frequent testing, very frequent adjustments to insulin and carb doses, and a greater danger of lows. It is going to take years for the DPH regs to catch up to this reality.
I do not know what the solution is, and was presenting the problem, in a proactive way, not making a complaint.

My daughter is now at college, taking care of her own diabetes, but those 15 years were rough in many ways. And, with all those phone calls, I was not able to work or even volunteer very well. I got calls in the grocery store, while doing laundry, visiting my mother. Cell phones made a big difference. For many years, we did this without cell phones and it was nerve-wracking to go shopping for groceries.I also was called by the school to cover gym if the nurse was busy, and went on field trips to keep her safe.

Again, let me know what state you are in and I will look into it. The problems I raised are real, and I did not make "broad generalizations," but instead described very specific issues that greatly affected my child, me, and the school for 15 years. I lived it, and we made it work in a positive way, but the regs need to change for others.

Posted by shosty on 4 October 2009

ps I live a few towns over from Laura Plunkett.

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