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Re: [IPk] Summer Camps and SEN statements

This is so disappointing in this day and age shouldn't be allowed 
Sent from my BlackBerry. wireless device

-----Original Message-----
From: "Jackie Jacombs" <email @ redacted>

Date: Sun, 29 Jun 2008 10:57:50 
To: <email @ redacted>
Subject: RE: [IPk] Summer Camps and SEN statements

Hi Arlene

Yes you are right, I know about this document and have a hard copy of the full
report and our group UK CWD Advocacy Group asked to be involved in this, but
were more or less told we weren't wanted.  This was in 2006.  However they were
very strict about wanting only Welsh parents helping on the working group.  We
asked DUK if they were doing similar research themselves in England but they
were not  and weren't interested at the time. At this time there was no one at
all in DUK working on schools problems at all and no one to speak to about this
 issues. In the end the working group couldn't seem to find enough Welsh parent
to help in the working party and one of our group members who had two children
with diabetes and one with a statement did go and help on the group.  However
expenses were initially borne by the parent.  The parent attending was dismayed
by the wishy washy recommendations when the report came out.  It was very
disappointing to say the least and things haven't changed a bit. We currently
have a parents in Wales who had had lots of school problems.    DUK have looked
 at Diabetes Cymru report but have done their own quick short survey which
things were just as dire in England and have made recommendations and are
producing advocacy pack which the Schools Action Group  INPUT UK CWD group, DUK
and JDRF have worked on together.  I dont think there will be any quick

If schools and the LEAs are not going to make those changes willingly, then
lawmakers need to act to ensure that children have equal access to educational
  facilities and unrestricted access to their lifesaving medications. Which
the youngest children may need help with insulin injections and blood glucose
testing, they also need reminders about snacks times and meals.  Older children
also suffer problems because their needs, often being quite different, are
sometimes totally ignored. Parents frequently complain that the schools do not
read the literature and care plans sent in by parents and appear not to
understand the serious consequences of hypoglycaemia being left untreated and
underestimate the likelihood of these events occurring.

Progress has been slow and hampered by various events.

I'm not giving up though.............nor are the great set of parents from the
UK CWD list who also do a lot of work on committees and working parties and
 people like John Davis and medical professionals doctors and PDSNs who have
been involved in trying to change things

>  Hi Karen I know diabetes uk cymru have been doing a lot of work re
> childen and
> school and would be useful to see the things they have looked at it has been
> going on for quite some time
> Arlene
> Sent from my BlackBerry. wireless device
> -
> contact: HELP@insulin-pumpers.org

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