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Re: [IPk] Dissapointing meeting with Sasha,s consultant

Dear Jackie
How awful for you. All I can say is that if you are prepared to travel to
London, Kings College Hospital have children on pumps. I know that Charlie
(10) is the youngest but there are several who are teenagers - and the care
is 24 hours - telephone night or day - a huge relief for everyone. The pump
nurse telephones Charlie each day, including weekends to advise on changing
basal rates etc.
I could give you some telephone numbers if you like.

Barbara D
----- Original Message -----
From: "Jackie Jacombs" <email @ redacted>
To: "Insulin Pump List" <email @ redacted>
Sent: Friday, November 29, 2002 4:22 PM
Subject: [IPk] Dissapointing meeting with Sasha,s consultant

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> Hi All
> We had an appointment today with Sasha's diabetes consultant.  The meeting
> didn't go well at all.  He is very wary of pumps and kept bringing up the
> old histories about their early use and problems in the UK.  He doesn't
> to refer us to anyone else as he thinks that we have been brain washed
> wanting a pump by adverts!!!  He doesn't want to refer us to B' ham
> because they only have experience of one child on a pump .  There is
> near us that has any children on pumps.  He also thinks that it's not
> because there is no medical need!!!  because her HbA1c is good, the last
> was 6.2   The only thing he will agree to is to refer us to someone else
> a second opinion.  The person he suggests that  we might talk to is a
> dialectologist, but he says that she doesn't have anyone on pumps either
> that she is a renowned expert so that she should know what she is talking
> about and if pumps were that good she would have patients on them.  He
> seemed to think that we would be putting Sasha's life at risk because
> do not have the experience of  managing pumps.  As the conversation when
> he seemed to become more against Sasha pumping than ever.  Saying that in
> few years time things might be better when there were more centres with
> children pumping.  He said if she had a really high HbA1c that might be
> worth the risk!!!!!
> When I pointed out that Sasha's HbA1c was reflecting the peaks and troughs
> not a steady level but he said a pump could possibly make  things worse!
> I just don't know where to go from here.  He went on to say several times
> that if we went to people for medical advice (meaning him) then we should
> listen to them.  That if he didn't know about something that he would talk
> to experts and take their opinion.  In other words he says no, so we
> accept his opinion.   I need to find a centre where they have a few
> on pumps to stand any chance.  But we cant really go to one that is too
> away.
> I feel gutted as our D nurse had seemed so positive before and had seemed
> think that he would refer us anyway.  I had no idea that he was going to
> so against Sasha pumping.
> If anyone know of any centres that have a few children pumping will they
> me know.  I has to be children and not adults.
> Jackie Jacombs
> email @ redacted
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