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

Pat you wrote

>> Why do you particularly want to be at a centre with children pumping?
> Yes, it may be harder for children to go through the first few weeks, as
> they may not understand the need for 10+ bg measurements a day, the need
> to be very careful, and perhaps even stop, all irregular exercise, etc.
> etc.  And setting up their basals and ratios may not be as easy, but ...
> it's not that different to adults pumping (compared to the difference
> between mdi and pumping, say).

Pat it wasn't me that wanted to go to a centre with lots of children
pumping.  It was my consultant who said that he wouldn't consider a hospital
that only had one or two children on pumps.  He seemed to be saying that if
I went to somewhere where they haven't got lots of children on pumps that
they would be experimenting on my child and it wouldn't be safe!!

Then in the next breath he seemed to be saying that pump therapy was still
experimental and how  a few  people had  died from being given overdoses
through pump malfunctions in the US and how he would live withhimself if
something went wrong for Sasha.  He said he would refer us to a
diabetologist but our D nurse didn't know any of the people that he
mentioned and I don't know if the hospitals that these people are at would
support children on pumps. He said to go away and think about it!  and let
him know if we want him to refer us to a diabetologist.

I explained how the pump nurses do the training and he didn't think that was
right, he expects the hospital staff to know what they're doing.

That make me laugh as I have had some bad experiences in Cheltenham Hospital
because most of the nursing staff and doctors know bugger all about diabetes
care if you are ill.  If our consultant isn't on duty threes no one who
knows what they're doing.  All they know is that bg can go up if people are
ill.  They are always surprised if  Sasha  has low bg and is vomiting with a
tummy bug.  We've been in with 5 or 6 bouts over the 3.5 years since

Our consultant wants us to wait a few year until pumps are more common.

mum of Sasha

> Did anyone else hear Casenotes on R4 on Tuesday night?  It was oncology,
> not diabetology, but one doctor was asked about 'knowledgeable'
> patients.  She said there were two kinds: those who did not appreciate
> that their cancer would not respond to the treatment they were
> advocating, and these were the easy kind.  You just explained that to
> them.  The hard kind were those who were right: but you couldn't give
> them what they asked for because you didn't have the budget.  The
> interviewer pressed her, and she said, 'I do believe it is unethical to
> tell an informed patient the reason I am not prescribing a treatment is
> for his own good - or any other reason - if the reason is purely that I
> don't have the money'.
> I can see why doctors shut their ears to all evidence that pumps are
> good things: if the only reason they are not prescribing them is money,
> then it's unethical to tell the patient that it's because they're
> dangerous, not needed, etc.  And what doctor in his or her right mind is
> going to say 'I'm with you 100% Mrs Jacobs, a pump is what Sasha needs,
> but the NHS is too poor to give her one'?  That is _not_ the way to win
> friends and influence people among ones colleagues, who are far more
> important than one's patients.  No, it's far easier to dodge the
> ethically difficult by keeping one's head down.
> It is, in any case, I believe, your GP, and not your diabetologist, who
> makes the referral for a second opinion (and, indeed, your diabetologist
> has no say whatsoever in whether or not you can ask for one).  I suggest
> you make a long trip to see an expert on children-with-pumps (Charlies',
> in London, perhaps?), and then if they're positive, go to your nearest
> centre of pumping excellence - after all, _someone's_ child has to be
> the first.
> Best wishes,
> Pat
> (dm 30+, 508 1+)
> --
> Pat Reynolds
> email @ redacted
>    "It might look a bit messy now, but just you come back in 500
> years time"
>    (T. Pratchett)
> ----------------------------------------------------------
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