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Fw: [IPk] Danielle's visit to Consultant today - VERY LONG MESSAGE

----- Original Message -----
From: Rob Reznik <email @ redacted>
To: <email @ redacted>
Sent: Thursday, December 05, 2002 12:21 AM
Subject: Re: [IPk] Danielle's visit to Consultant today - VERY LONG MESSAGE

 Hi Barbara - as a relative newcomer, and someone who is trying to get his
daughter on the pump, I would like to say a few words.

 Whether you are right or wrong you are effectively undermining the
Consultants ability/knowledge and position. I went to my own GP today and my
opening statement was 'I am not here to tell anyone how to do their job or
undermine their ability or knowledge' and I re-enforced this during the 30
minutes he listened to me. I came out of the meeting with a promise to write
to the hospital of my choice ( which I gave him full details of  - including
Dr names ) to ask for a second opinion and change of hospital/consultant. I
continually praised the current paediatric consultant ( which I found
difficult ) and blamed the poor treatment on the workload she currently has.
I came out of the meeting completely drained but happy that I had got what I
wanted. For me it was relatively simple in spending hundreds of hours on the
internet accumulating as much information as possible so that I was full
prepared - you may have felt the same but could you have done better? I came
out of the meeting realising that I new a substantial lot more than the Dr
himself - he is after all a GP and not a specialist in Diabetes - I will now
continue my quest for knowledge so that hopefully I can answer any questions
the new consultant will ask - knowledge is power - if you knew that frosties
had a lower Glycemic index than Cornflakes ( I didn't !) you would have made
the consultant think - if you have the answers to their questions they will
find it more difficult to say no. If you have an a******e of a consultant
who doesn't defy logic then change - you are allowed a second opinion.

My first problem is to find a hospital who will support my daughter on a
pump - my second is to get it funded - if I can get past the first and find
a brick wall on the second we will finance it ourselves - by whatever
means - it is that important to us all.

 If I walk in to the new consultant and ask for a pump what do you think he
is likely to say? So I will have to do a sales job and bide my time and
pounce when the time is right ( ok so I may give it 5 minutes )

 From my experience I would suggest you ask the consultant to write to you
explaining the reasons for refusing to support pump funding - for your
reference! Then see if you can work on the points given and tear them apart.
We all know - and I'm sure everyone else will when the NICE appraisal is
released - that pumps should not be given as a last resort but an option
from the beginning.

 Have you given him any documents on previous trials on DSII vs.
treatment and the long term costs of complications. You would again be
undermining his knowledge unless you introduced it as ' you may not be aware
of this but, along with a number of other studies shows etc.'. I have not
yet seen  trials where conventional treatment has out performed DSII - if
there are can someone show me them - I would like to know why!

Keep your chin up and if you have a pump but are only trying to get it
funded you are one step ahead of me and closer to the finsh line.

 Good luck


 From: <email @ redacted>
> To: <email @ redacted>
> Cc: <email @ redacted>
> Sent: Wednesday, December 04, 2002 8:33 PM
> Subject: [IPk] Danielle's visit to Consultant today - VERY LONG MESSAGE
> > Please do your share and make a tax deductible donation to the FALL
> > pledge drive. Your help is needed to raise the remaining funds
> > necessary for Oct, Nov, Dec. Won't you please give $10 or $20 a year?
> >
> >     http://www.insulin-pumpers.org/donate.shtml
> >
> > Your annual contribution will eliminate this header from your IP mail
> >
> > The visit to Danielle's Consultant started well but didn't end that way!
> > After seeing the extremely happy DSNs, the Consultant asked Danielle a
> > questions.  He said "How are you feeling?".  She said "Fine".  He said
> it
> > a pain to carry the pump around with you all the time?".  She said "No,
> > doesn't hurt".  He said "I mean, is it annoying you to carry this pump
> > everywhere with you?".  She said "No, I'm used to it".  He said "So in
> what
> > way do you feel better?".  She didn't answer him so he said "Do you feel
> like
> > you have more energy?".  She said "Yes and I don't feel diabetic any
> more".
> > He beamed a big smile and said that that was very good.
> >
> > He then turned to me and the pump nurse who accompanied me to help me
> > any misconceptions he might have had with the pump.  I told him that I
> > still having problems with the breakfast shooting the blood sugar up too
> > high.  We discussed what we were doing about this problem and then went
> to
> > talk about her weight increase of 3 lbs in 4 weeks!  He was very happy
> with
> > that but told me that she was still underweight so he wasn't worried if
> she
> > continues to put more on. (She is 4 st 11 and looks perfect now to be
> honest.
> >  She is 4 ft 6" (107 cms) and is 8 years old).  He asked to look at her
> > infusion set and the areas where previous sets had been.  He asked if
> there
> > was anything else I wished to talk about.  I said:-
> >
> > "Our GP has applied for funding and he may need to ask you for your
> support".
> >  He said "Well you know my views on this".  I said "Well I don't agree".
> He
> > said "What don't you agree with?"  I said "You think I haven't tried
> > enough to control her diabetes with injections".  He said "You haven't".
> I
> > said "I have tried my hardest.  Diabetes isn't just one hour at the
> > you know".  He interrupted with "One hour! That's a long time".  I said
> > have to live every minute of every day trying to control her diabetes
> you
> > see a bit of it once every 3 months".  He said "I know, but you were
> looking
> > for the icing on the cake.  Soon after your daughter was diagnosed, all
> a
> > sudden you came to me asking about the pump.  You were determined to get
> it
> > and you were not prepared to look at her diet and insulin to achieve
> better
> > control".  I said "I worked hard to achieve the best control I could on
> > injections".  He said "No, you tried to match the insulin to the diet
> without
> > changing her diet too".  I told him that I didn't need to change her
> > because it was a healthy one before she was diabetic.  He told me that I
> was
> > not feeding her the correct food that was suitable for a diabetic.  I
> > "What sort of diet do you think I was giving her?"  He said "You fed her
> > Frosties".  I said "That was ONE morning!".  He said "Yes, but you
> > understand why she had a high blood sugar afterwards".
> >
> > I told him that I did understand everything and that I was not happy
> his
> > views.  He said "OK, if I had a set of patients who wanted the pump and
> had
> > to prioritise, you would not be put forward as a family who filled that
> > criteria".  When I asked him why, he said "What makes you think that you
> are
> > more suitable for a pump than all my other patients?"  I said "Not all
> > your patients would want one and they have to understand diabetes enough
> to
> > want to take control of it and be prepared to test their blood often
> enough
> > to pick up possible DKA".  He said "Well what makes you think you are
> > suitable?".  I said "Because I have done everything I can to get control
> and
> > have not achieved it in 14 months".  He told me that I haven't given it
> long
> > enough.  He told me that I had to prove that I could control diabetes
> better
> > than any of his other patients who achieve tight control on injections
> > diet.  He went on to say that the only thing he could possibly report to
> the
> > GP is a change in the HBA1c if that happens.
> >
> > Anyway folks, I watched my daughter go grey under her eyes and lose lots
> of
> > weight.  I wasn't prepared to watch this happen any longer!!!!!
> >
> > Barbara
> > Mum to Danielle, dx Aug 2001, on pump trial
> > D myself for 29 years
> > ----------------------------------------------------------
> > for HELP or to subscribe/unsubscribe, contact:
> > HELP@insulin-pumpers.org
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