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[IPp] Advocacy - changing nurse practice in the schools



This post will be long.  Let me briefly explain what it is so you can
read it and help me if you are interested.

I have posted several times about issues we had with the school
district.  Many of you know we flew Michelle Rago out here to help us
in our fight to put Andrea's 504 in place.  Now I would like to work
on the next steps.  Currently, schools are not allowed to have a
non-nurse administer glucagon or insulin.  However, we have one nurse
to cover ELEVEN schools, so the end result is that the kid or the
parent must be responsible for insulin administration and there is no
one to administer glucagon - obviously not acceptable.  Our district
nurse is willing to dialogue with me on these issues.  I want her
input to gain the perspective of the medical practitioner so that I
understand all issues when I go to try and work with the legislature
and local groups on these issues.  What follows is my letter to our
district nurse, outlining some of my concerns and asking for her
input.

I want to make sure the letter has the proper tone.  I don't want to
offend her, but do want to make her aware of a parent's perspective.
I want her input and insight.  I want to work together to find good
solutions.  If you have time to read the letter and give me your input
(or let me know additional things I should mention), please do so.
Many of you have already helped me immeasurably on these issues and I
truly value your input.

TIA.
-Natalie

Dear xxxx,
     Thank you so much for your response.  I really appreciate your
input on the school situation.  I know we both want the same thing b a
better, safer situation for our children in the school system.  I plan
to work as long as it takes to make real and lasting change.  I truly
hope we can continue our dialogue.  I want to make sure that any
changes that are made are for the best of all involved, and I am
dependent on you and my other nurse friend for the perspective of
those in the medical profession.  (The concerns my friend expressed
over making changes to the nurse practice act were things I had not
considered, and I am grateful she shared her opinions.  Her words will
shape my opinions and approach.)  And while we agree that things in
the school need to change, I am not sure I see clearly the best way to
proceed, and I will explain why.
     What I would like to do is outline for you a few concerns from
the "other side of the fence."  I am part of the Children with
Diabetes (http://www.childrenwithdiabetes.com/) parents mailing list.
On this list you will find hundreds of very educated, involved parents
of children with diabetes who work very hard to provide the best care
for their children and who work hard to stay up on current research
and treatment issues.  I have learned so much from these parents from
around the world, and many of the concerns I express here are echoes
of their sentiments.  I am hoping that you will respond with what you
think on these issues.  My hope is to end up better educated on all
points of this issue so I can work to make positive change.
     Many parents in Utah are surprised to find out that someone in
the school cannot be trained to administer insulin and glucagon.  They
wonder why it is necessary for the school to have a nurse do these
things where parents are taught to do these things in a couple of
hours in the hospital.  Many parents become experts on caring for
children with diabetes without ever obtaining a nursing degree.  Of
course I recognize that there are liability issues.  But I want to
point out that having a nursing degree does not necessarily qualify
someone to care for a child with type 1 diabetes.  There is really no
way for a general practitioner to keep up to date on the latest in
treatment and research on all medical conditions, so there are many
medical professionals not up to date on type 1 diabetes.  I can tell
you countless horror stories from other parents' experiences where ER
doctors and nurses and school nurses have little to no knowledge of
type 1 diabetes but are in a position to make decisions affecting our
children.  [I just want to say here that I know that you are the
district's most experienced and qualified nurse when it comes to
diabetes care because the district told me so.  But many nurses have
not had your exposure or experience.]  It seems that I have heard of
as many negative situations with school nurses as negative situations
where there are no school nurses, so I want to work to make sure we
don't create that type of situation here in Utah.  My hope is, if we
end up with a nurse in Andrea's school, that such a person will allow
me to train them on Andrea's diabetes and treatment.
     Another concern I have is this b how do we help the children with
diabetes whose parents may not be as involved in giving them the best
care without hurting the children whose parents are providing
excellent care.  Let me give you an example.  In your email, you
wrote, "A nurse needs to be able to make a nursing assessment of the
acute needs of the diabetic child and respond to his/her emergent
needs.  Nursing assessment is not a delegatable tasks." What does that
mean?  I don't actually want a school nurse making decisions about
Andrea's changing needs.  That is something the endocrinologist and
the parents decide.  In the case of a very involved, educated parent,
the endocrinologist will usually defer to the parents to make
treatment changes, etc., as the parent is in a much better position to
know what changes need to be made (as opposed to the endocrinologist
who sees the child quarterly).  I get nervous that a nurse might feel
that, because of their nursing training, their opinion supersedes
mine.  (I know of cases where this has happened.)  But in Andrea's
case, I am the expert in her care.  I consult with the experts and
make the needed decisions.  On the other side of the equation, I know
there are children whose parents, for one reason or another, are not
as involved in their child's care or are not providing good care.  I
know that the school nurse would be in an ideal situation to help
improve the care that child receives.  So how do we define the
responsibilities of and boundaries for a nurse in the school?  Another
point is that parents, to a large extent, can pick their child's
endocrinologist.  If a parent feels a certain endocrinologist is not
using the latest treatment techniques, or if different management
styles of the parents and practitioner make a relationship difficult,
parents can find a different endocrinologist.  However, parents have
no say in a school nurse (unless they are willing to transfer
schools), so some would be hesitant to hand over decision making to a
school nurse. So, again, how do we find a balance in the nurse's role?
     I want to understand another point about the nurse practice act.
In your email you wrote, "According to Utah Licensure Division, any
task delegated by a nurse or medical professional is practicing under
the licensure of that person who has delegated the job."  So the
current reason that insulin and glucagon administration are not
delegated is not that the law or the nurse practice act actually
prohibits it, but that a nurse would be putting his or her license on
the line for anyone trusted with any of his or her responsibilities.
Is that a correct interpretation?
     My last concern (for the moment) is thisb& we both know that the
education funding in Utah is extremely problematic.  We have poorly
paid teachers, huge classes, and no nurses in the schools.  I am
touched personally by each of those issues.  My husband is a school
teacher, my children are in public schools with large classes, and I
have a child with a chronic health condition.  It will be difficult or
impossible, however, to address all these issues at once.  There just
won't be sufficient funds.  I doubt the general taxpayer will view
school nurses as a more important issue than large class sizes and
outdated educational materials.  So where does that leave us?  If it
turns out that we are unable to get a nurse per school in the near
future, are there any short term solutions to be considered?
Obviously saying that no one in the school can administer glucagon
(which isn't even dangerous in terms of overdose, etc.) and forcing
parents to come into schools to administer insulin or having the
children do it themselves does not meet legal requirements of giving
students equal access to education.  And, as you pointed out, it
creates a dangerous situation for children with diabetes.
     I hope none of what I have written offends you.  I am not trying
to criticize any in the medical profession; I am only trying to show
some concerns that many parents have expressed.  My hope is that,
through our dialogue, we might be able to brainstorm innovative ideas
of how to move forward.  Please share with me your insight and
concerns.  I am anxious to learn from you.
     Thanks, as always, for your input and for the care and concern
you have shown for my family and, especially, for Andrea and her
health.

Sincerely,
Natalie

-- 
Mama to *Andrea 5.5, Alicia 3.5, Carlos 1.5, 
and anxiously awaiting child #4 end of March 2005
Happily married to Tom for over 8 fabulous years and counting
Salt Lake City, UT
*dx 1/28/03, pumping Cozmo 10/2/03 - diluted H - currently U50
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