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Re: [IPk] I've started the ball rolling!

Thanks Jackie, I found that detail fascinating. I suspect you touched on a
common feeling about the response of teams to very good HbA1c's. For many
people it seems if the HbA1c is any way high they blame you (us!) and if
it's lower than they are used to, you're accused of being too paranoid. I
think, as both a physician and a person with diabetes, that you are an
excellent role model for other parents, and for young people with diabetes.

My own experience of teenage diabetes was more primitive, both in technology
(no mixes or analogue insulins those days) and in philosophy - for me, the
fear of hypos was paramount, to the extent that I settled for glucose levels
around 12 most of the time. I didn't test, because I didn't need to! I was
happy because I wasn't having hypos, and I equated trying for better control
with having hypos all the time.

I believe things have changed a lot, so that we are now free to try for
better control without loads of hypos by using the range of insulins and
devices (including excellent meters) at our disposal. From the sound of
things, you and your daughter have done exactly that. I am less forgiving
about physicians who opt out; part of the duty of a modern professional is
keeping up with developments, and in cases like yours, his main role is to
be a facilitator to help you use whatever tools are available to reach your
own goals. Pumps are one of those tools, and it is no more fair for a
physician who is unsure or unconvinced to simply stick his head in the sand,
than it was for me to ignore the evidence that good control would protect me
from complications (particularly as for much of the time that I wasn't
testing, I was a medical student!!)

Essentially what I'm saying is the balance of power should be shifting. If
you know better, say so. Don't put up with 'sorry but I don't know anything
about that' and don't let anyone, doctor or not, contradict your expertise
in managing your own diabetes, or that of your child. I'm not talking
rebellion, I'm talking discussion, an exchange of viewpoints, and hopefully
an agreed position that upholds your view and that of the doctor in equal
measure. That is all it takes to turn a mundane and ineffective
doctor-patient interaction into a truly effective relationship. The
initiative has to come from us, because it is our side that sees the
imbalance that often exists at the moment. 9 times out of ten it will work,
because teams really do want things to go well.

One last point, Sasha sounds like a kid who is well established with her own
diabetes. I bet she has a point of view too. How do you get that across,
Jackie, and what aspects of her own care have you handed over to Sasha
herself, and how did that go? My own belief is that we should takes young
people's views into account as soon as they are old enough to express them,
with increasing influence until they are old enough to take full
responsibility. With something as personal as diabetes, and with a limited
capacity for decisions to make any immediate impact on the long-term
outcome, this might happen as young as 12. What do you think, Jackie and
other parents?

Tony O'Sullivan
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