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RE: [IPk] Attitudes of Health professionals RE funding

Abigail and Carmel

A while ago we asked Sasha's consultant about pump therapy and if you remember he trotted out all the old
arguments from the 80's experience, experiments on my child, no one else using pumps, dangerous overdoses
etc etc.  Anyway eventually he said he would refer us to a pead endo at John Radcliffe in Oxford about 50
miles away, a Dr Julie Edge.  Enquiring at pump companies they appear to have one child on a pump, few
hospitals that I can find actually have more than one child altogether.  Anyway, so when we get the
appointment I need to think carefully about what I want to say.  I doubt that Sasha's consultant will
send me a copy of the letter that he has sent to Dr Julie Edge, so I don't know what he's said to her.
Probably something about a obsessional mother!!!!   and evil pumps.  So I would be interested if anyone
has any tips for what I should say.  What sort of things should I bring up.  Should I write anything down
or take in letters in support of pumping.  As far as I can gather Sasha's consultant is referring us
because her current regime is not working that well and never really  has, but Sasha's HbA1c is usually
around 6.5 -6.9.   but pumping may not be what's on offer to us initially

Any tips on what to say to put our case would be helpful.

Sasha is very sensitive to insulin changes and so we seem to have the choice between some days skimming
hypos or being too hyper and if we drop the Novorapid by even a half a unit, then come lunchtime, her bg
is way too high and by tea time  If I left it, the her bg would in the 18+.  Having coeliac too make life
more difficult as the carb count of gluten free bread biscuits and cakes is much higher than "normal
foods".  We can rarely go out to eat in the day with the twins because Sasha has to eat by 12.00 and its
just impossible to find a restaurant, even if you have rung, that can rustle up a GF meal in time.

Still any advice welcome


Sasha 8 year dx 1999

Novorapid at 7.45 am
Insulatard at  8.30 pm
Novorapid at  5.15 pm
Insulatard at   7.30 pm

Novorapid to correct other highs

> . I find it amazing that in all areas some
> > Drs still have such a commanding presence and they are so surprised that
> > patients should question THEIR decision.
> > I was alarmed at the attitude
> > of the nurses -who were a lot younger than me, the way they catagorise
> > people with our condition and were so willing to condemn people who do not
> > comply in their eyes (or else patronise which is why I did not admit to
> > being afflictrd!)  >
> Yes
> Heard it so many times before
> went to a meeting last Novemeber. Diabetes consultant presenting about the
> wonders of glargine. (Now don't get me wrong I know it works superb for most
> people and is vastly better than NPH)
> He discussed some cases at the end and how we would manage them: one was a
> teacher in her 30s who wanted to start a family. She was supposedly " well
> motivated" but was on twice daily mixtard with HbA1c of 8.1%. Young
> assistant ( who is actually a part itme GP as well as working in diab
> clinic) came up with" I,d nag her about her lifestyle"
> 8.1 % on mixtard is a bloody miracle as far as I can see. But it is
> immediately " lifestyle" and I feel like screaming. Type 1 is not a
> lifestyle disease it is auto immune in aetiology as we are all well aware. I
> feel that the lifestyle argument is put across to justify denying proper
> care or even being bloody bothered to inform themselves of modern therapy.
> Unsuitable lifestyle covers a myriad of things not just smoker, poor eating
> habits etc but anyone who has a job or profession or engages in leisure
> activities and prefers to eat meals whenever friends, peers of family do
> rather than at rigid preset times and stick to an exact routine, basically
> not subordinating their while life to their diabetes. How can other doctors
> be so arrogant?. Patients it seems are expected to go to any lengths and
> make any quality of life sacrifices and lead pateint uncomplaining little
> lives and smile bravely and talk about how wonderful life with DM can be,
> but if they ask questions, want to be empowered and really take control and
> fit diabetes to their lives with very frequent testing plus pump if
> necessary they are neurotic/ obsessive or demanding and unreasonable.
> Control at any expense as long as only to the patient not the NHS or rest of
> society...
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