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Re: [IPk] one injection per day

I rang up my D nurse.  She is the senior Nurse and asked if there was a
support group in the area.  She said there used to be one at one time
(co-incidentally run by someone  else with twins who are now at uni).  Anyway
I said I was interested in setting one up and she seemed pleased at the time.
We set up a meeting and we discussed the sort of thing I hoped it would be and
I said I would write an introduction about myself and Sasha and just say that
we hoped to meet up usually at someone house in the evening.  Most of the
parents work during the day.  I wrote a little bit about support and that sort
of thing.  The idea was that the clinic would print off the sheets which had
my phone number and the clinics number and them be mailed to all the parents.
There was a bit of a problem when I was told that they had been mailed out and
there appeared to be no response!!  I didnt get a single phone call!  The D
nurse seems quite unconcerned about it and just said, that's the way it goes!!
I was gutted at the time and getting desperate as I was having such problems
with the school.  Then suddenly I got about 7 phone calls 6 weeks later.  They
hadn't mailed them out previously at all.  So the help from the clinic with
the support group has sort of been hit and miss.  I keep taking posters in and
notices for the next meeting but they don't usual put the notices up.  Its a
very informal group and still not very big quite age range of children from 2
years to 15 years.  We haven't done much with the children as such because of
the wide age range.  But the parents get together and ask advice and check out
new meter or share information.  We have a list of parents who are willing to
go in and sit with newly diagnosed parents.  Especially useful if you have had
a child dxed at the same age.

I believe you may be able to get funding from someone like Diabetes UK but I
didn't want to have to have more formal meetings, chairpersons and minutes,
etc and have to account for funds or to ask people to pay to come.  I do spend
quite a lot of time on the phone and printing off things of interest so I do
end up out of pocket.  It's only mums who come but any parents or carers are
welcome.  But usually someone has to stay at home to mind the kids and it's
often the mums who do most of the D care.  So the Dads dont usually come.  The
clinic organise a Diabetes Funday that when its not rained off it usually
quite good fun for all ages though not really a thing for "cool" teenagers.
This year one of my group is organising it and I am helping.  Last year was a
barbeque in the rain!! But enough sun to make it fine in the end.

3 of the mums with younger children do meet up at other times for coffee as 2
of the younger one have only recently been DX'd.

We got our D nurse to come out and give us a talk on the clinic and she  asked
if there were any changes we thought would help.  Hopefully we are going to be
able to do the HbA1c blood tests a week or so before the clinic visit so that
when you get your appointment you are discussing THAT recent A1c and not the
one from six months ago.  At the moment they only do the A1c went you are at
the clinic.  Which to me is stupid.

Anyway phone up your clinic and ask it they will help you set one up.  If they
dont want much involvement which is quite likely, suggest that you write an
introduction, aims of the group etc and see if they will mail it to patients.
They cannot give you names of patients.

If you like I can send you a copy of the letter that I asked the clinic to

we aren't a big enough group to get speakers in or anything but later this
year I might check out something different.


> Hi Jackie
> Yes it is difficult with Miles being so young but it is getting easier, he
> does now recognise the symptoms of a hypo etc, but i think a child with D no
> matter what age has to go thru so much not really understanding why them.
> But then i dont understand why my son????
> Can i ask Jackie how did you go about setting up your local support group?
> Where we live there is nothing for children with diabetes everything is set
> up for adults, it would be great if i could get other parents together, any
> advice would be appreciated.
> Jo
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