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RE: [IPk] Re: ip-uk-digest V2 #544

Hi Margaret

 Sadly diabetes care is not very good in many parts of the UK. Not enough time
spent on diabetes
 education. It makes me very sad and angry too. Jamie's care sounds absolutely
wonderful, I don't know
 anywhere in the UK where they would be able to give such intensive support and
training. We have private
 medical cover through my husband job but diabetes care does not seem to be
something that's covered in
the UK.  Complications would be though.  How ironic is that!

 Because the patient, or parents of the patient do most of the diabetes care, I
doubt that there will be
 any problems when you come back to the UK ,even if your local hospital has no
one else on pumps. I
 imagine when you know whereabouts in the UK you will be, that you can ask
Disetronic where the nearest
 hospitals are that support children on pumps. I cannot imagine that anyone
would take Jamie off a pump.
 I have heard of other people coming from abroad already using insulin pumps and
I don't think that had a
problem.   Although I think that the situation was different in the past.

Hoping that Sasha will be pumping one day.

Mum of Sasha, AGED 9

> Hi to everyone,
> It's really sad seeing how hard it is to get onto a pump in the
> UK --------looks like you have to fail all the other
> treatments....don't the doctors understand that the best
> treatment possible for an illness like diabetes which affects you
> every day and hour of your life is the best treatment available?
> Sure pumps may not be for everyone. My 11 year old was put on a
> pump here in geneva on the 26th September, diagnosed 22nd. We
> were offered injection routine (5-8 a day for best control) or
> the MiniMed or Disetronic D-tron pumps. No-one pushed us on the
> choice. Jamie was given trial pumps to program and "play with"
> and we left the choice to him.
> We also had a lot of help from a dietician specialising in
> diebetes who worked out meals on the basis of what he normally
> ate and around the hours he normally eats (school days) - so we
> count carbohydrates but havn't found this hard at all.
> Disetronic have also shown theselves very efficient
> His basal rates and schema for insulin for meals was worked out
> in hospital when they tested BG every hour (he was in for 11 days
> in total).
> We have had so much good care. Yes it cost a lot of money
> (covered by insurance here) but as a result Jamie is fully in
> control of his diabetes treatment. I have 100% confidence in what
> we are doing and it is almost as though he was never ill.
> Please don't take this in anyway as boasting...some of your
> e-mails make me  so sad and so angry that you have to go through
> hell to get a pump.
> We will be in the UK from about June next year (........I hope
> no-one tries to take Jamie off the pump as he hasn't tied other
> treatment schemas...........) and me and Jamie would really like
> to do the maximum to help others in anyway we can.......I also
> told the hospital consulant here the situation in the UK and she
> was horrified .. she had only ever met pro-pump users at the
> european conferences she attends...........
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