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Re: [IPk] Hospital visit

In message <l0313030bb4ab5cd57d9c@[]>, John Neale
<email @ redacted> writes
>>Slow down this is starting to scare me !!
>>UK pump users are still going to need supportive centres here who can see
>>them ,
>>assist with pump advise and troubleshooting etc.
>>Long distance medical care can be difficult and may result in problems .
>>How do the rest of you feel about this ?
>I feel just like you Morag! :-)
>Encouraging people to get remote medical advice from another continent,
>medical culture and legal system, would seem very fraught with problems! I
>don't doubt it could be done, but it hardly sets a good precedent.

I feel you both misunderstood my intention, and are both over-optimistic
about the current situation.  

Being assessed by a doctor very experienced with pumps, and initial
support, even though it is in a different culture is, to my mind, better
than no pump, or pump and no support.  The situation in Britain today
1/ Get lucky, and get into a trial
2/ Go private or abroad
3/ Persuade a doctor to let you have a go, without them doing a proper
assessment, because they don't have the knowledge (the situation of
Wendy and the lady from Blackpool)
4/ Go without (without assessment by a qualified doctor that this is the
best option for you).

2/ It's far from ideal, but it's the best available for many, now.

I think you are both over-worrying about failure.  If anyone fails, it's
going to be anecdotal evidence, just like most successes in the UK are
merely anecdotal, and either ignored (as with the successes), or
recalcitrant stick-in-the-mud doctors are going to use anecdotal
evidence, in the face of hard clinical evidence, to justify their views.
I for one would not wish such an unscientific doctor on any diabetic,
because fine though Morag's re-education is, it isn't brainwashing.

But the problem, as you both rightly observe, is not going to be solved
by one or even a hundred supportive doctors overseas.  I would make what
might be a dangerous analogy - diabetes is not as bad as slavery - what
I was proposing was an Underground Railroad: not under the illusion that
if we all moved to Canada (so to speak) everything would be fine, but
because some individuals have great needs, and can't wait the years that
educating their doctors could take.

I also feel, as someone who has argued for four or five years for a pump
now, that blaming us patients for not arguing hard enough is a little

I'm afraid I don't see patient education of doctors as being a great
source of change.  Yes, I hear of individuals who have won round their
doctors: but do those doctors tell you that they're recommending about
10% of their patients for the pump?  One percent?  One patient?  I think
that Morag (and her competitors) have a better chance, since,
traditionally, doctors listen more to companies than to patients. Where
patients _are_ effective is in fellow patient education.  If doctors
have more than one pump user, I'd bet several hours voluntary service
that it's because user A talked loudly in the waiting room rather than
because user A persuaded doctor B that they were good enough to
prescribe to others.

Given that there is an acknowledged lack of support centres, why don't
we go for New Opportunities Funding (see www.nof.org.uk - follow the
link for 'Healthy Living Centres')? The centres would be additional to
the usual clinics (who would retain responsibility for things like
gathering bg data, monitoring complications, etc. etc.)  The centres
would be just 'centres for healthy living advice for diabetics' -
offering advice not currently covered adequately by clinics - not just
pumps, and offering support to doctors and nurses who are probably
feeling unsure, if not threatened, by railroaders and general patient
demand. It would probably be one 'virtual' centre, with a network of
individuals working out of their own homes, rather than bricks and

If things don't work out, and I become a railroader, I'll write the NOF
application as an act of penance.  I might write it anyway, if someone
twists my arm! Or if someone can say, yes, they converted their doctor
so he now considers the pump for patients without them asking.

Best wishes
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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