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[IPk] NICE report and Diabetes UK/Balance

I have a bit of a history of increasing dissatisfaction with Diabetes UK and
Balance.  Lots of little occurrences have added up to make me think that it
is not worth it - .  But then I did the deed of covenant thing - so soon
will never have to pay!  Even then, I may have to cancel receiving Balance
on principle!  I remember my consultant explaining to me how tied in
Diabetes UK is with the NHS (can't remember the detail) but his view was
that they would always be "guided" by the NHS. 

I have written to the editor at Balance several times with proposals to
write (not necessarily me) about pumps; life on a pump; the decision to pump
etc and have been very rapidly slapped down!  In addition, my husband has
done a number of sponsored marathons for Diabetes UK, and last year did the
London Marathon for JDRF (having been irritated by Diabetes UK's attitude
when he contacted them) and the difference in the support JDRF gave him was
incredible - just stuff like keeping in contact with him, motivating him,
telling him how they money would be spent etc.

Anyway, that's my little battle with Balance - let's just imagine what a
real lobbying group could do for us!

Audrey Sheal
IDDM 22 years +; Minimed 508 2 yrs +

> Date: Mon, 03 Mar 2003 01:52:36 -0600
> From: "Melissa Ford" <email @ redacted>
> Subject: Re: [IPk] Diabetes UK
> As an outsider to the 'system' (such as it is) in the UK (not to imply
> that 
> there is a better organised 'system' anywhere else, but to point out that 
> many things we consider 'systems' are way less than functional, something
> I 
> would hope an actual system would be), here's what I've thought up:
> Why on earth _would_ Diabetes UK take a stand for technologies,
> techniques, 
> and theories that the NHS has not already enthusiastically embraced? If
> D-UK 
> were to go about encouraging people to speak to their
> GPs/consultants/nurses 
> about getting more frequent HbA1Cs (two a year = not enough!!), wider 
> availability of pumps, or getting more diabetes education, the NHS could 
> accuse D-UK of sensationalistically trying to create demand for services 
> already in short supply and/or needlessly attempting to place a greater 
> drain limited resources. The NHS has very big problems on its hands; the 
> last thing it wants is a well educated citizenry demanding appropriate 
> treatment. If D-UK is to be effective at achieving any of its aims,
> keeping 
> a conservative, establishment-style 'party line' keeps it credible in the 
> eyes of those who trust the NHS. And that's the way the NHS likes it, 
> because it won't have to change if everyone's disillusioned and
> complacent.
> Reactionary? Yup!
> Melissa
> IDDM 9+ years; MiniMed pumper 6+ years; American w/an attitude 21+ years
> Co-ordinator, Oxford University Student Union Diabetes Network
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