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Re: [IP] Diabetes Advisory committee
Both excellent ideas...both of which were things we wanted to see done
too, when Melissa was dx'd at age 9. As soon as I'd realized she was atypical
in how well she'd adapted ( doing her own shots the 2nd day in the hospital),
I offered to come into the hospital & have her visit newly dx'd children. No
one ever called or followed up on the idea- despite my proposing it each time
we had an endo visit. They all agreed that it was a great idea, but until
someone takes on the responsibility of setting up a workable arrangement, it
just doesn't happen, unfortunately.
As for the staff psychologist, when Melissa was dx'd, part of the "team"
included a wonderful social worker, who was Type I himself. His connection
with Melissa, his "insider" jokes, etc. made him unquestionably the single
most valuable member of the team during that overwhelming week......and need
I tell you what happened? BUDGET CUTS! He lost his position & was replaced by
"accessibility" to one of the few other remaiing social workers (
non-diabetic) who serviced the entire hospital. Not that it mattered, because
by then, the 6 days we'd spent in the hospital had shrunk to 2 or 3 for many
newly dx'd kids! Sad state of affairs.....
That said, however, JDF has recently implemented a new program called "Bag
of Hope" which contains the Rufus Bear, helpful booklets & items designed to
facilitate the "crash course" in Diabetes 101. It was designed by a mom out
west who has her chapter's distribution of these canvas tote bags down to a
science. I spoke to her at the JDF conference in California in June & she
told me they have compiled a list of volunteers with kids of various ages who
make "home visits" (or hospital visits) to newly dx'd families, dropping off
the bags, offering help & support.
Our Phila. chapter now has several cartons sitting unopened in our office,
and there they will remain until a plan is put into action. So my next
project is to determine if there are "confidentiality" issues with the local
Children's Hospital which would prevent them for giving us the names (
probably are...), in which case we'll distribute flyers to be given to the
families upon discharge, promoting this program & suggesting they call us.....
Problem is, just yesterday I heard of not one, but THREE, local
well-respected physicians giving up their practices- a sad sign of the times.
One is going into research, another into administration.....So is it any
wonder that "follow through" is almost non-existent, when the docs & their
staff are scrambling to just keep their heads above water, when someone else
is dictating how to manage their practice, their time allotments,
Regards, Renee (pump-mom)
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