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Re: [IPk] Response to emails received

If you had trouble reading the document Jeremy enclosed in his email, here
is a copy in plain text:

Jeremy Grainger writes:

In response to everything received today I thought I might add a few comments.
Thanks John for note re. HTML, when looking at it I saw the default
settings were for plain text for news and HTML for other emails, having
worked as a programmer I know consistency and logic are lacking.

Re. John Pickup, I do not have an email address for him but his telephone
and fax nos. are 44 (0) 171 955 5000 x 3014 and 44 (0) 171 403 9810,
respectively (work nos. in Chemical Pathology at Guys), he is one of very
few people still at Guys from Harry Keen's original pump research in late
70s/early 80s.

Re. Pumps in Britain what I have found over many years is that it is very
much like tossing a coin as to the opinion so called 'diabetologists' have.
Some consultants have refused to accept me unless I ceased to use a pump,
saying they were dangerous and cause more harm than good. They use their
own opinions rather than evidence sitting before them (myself). Other
consultants have been very interested and asked me to tell them all I knew
about infusion pump treatment, saying they have never met anyone who has
used a pump before.

Re.  Finance/funding of my pump, I was very well treated by Guys who
provided everything, until Mrs Bottomley introduced hospital trusts, then
because I did not live within the bounds of the Guys hospital trust they
refused to provide me with anything other than appointments. I eventually
managed to overcome this by writing several letters to John Major, Mrs
Bottomley, the Guys chief exec and my own MP, telling Mrs Bottomley that
she would be responsible for my funeral expenses. I was very lucky because
my local MP had a dislike of Mrs Bottomley and fought very hard for me. An
arrangement was made whereby I could get some things from my GP, some from
another hospital and buy only the batteries myself. This arrangement costs
the NHS much more than the original one but politicians are not best known
for their IQ.

Re Suzy Listers comments I know exactly how she feels, it took a lot of
persuading to get me to agree to first use a pump (in 1981 they were very
basic and at least five times the size of the one I now have). One evening
somebody range me up and told me that he had been participating in Harry
Keens trial and that the worst day of his life was when he was told that
they wanted the pump back and that his part in the trial was over. I agreed
to try the pump out for two or three months, possibly my counting is not
very good but that has extended to 19 years. The difference the pump made
to my life is best described by what Wendy Johnson talks about re. Sleeping
in etc to which I would add the ability to miss/have meals when wanted
rather than as ordered. The difference to my health can best be described
by what other people said to me, almost everybody I met (who had known me
before) said 'Jeremy you look really well' after I had been using the pump
only 2-3 months.

Re.  Standard deviation (use of re diabetic control) surely it is not too
difficult to realise whether it is high or low, if one keeps records of
test results and the knowledge of it can only really be of use if it is
low. Having been using a pump for many years and having achieved a vastly
improved control (low standard deviation) as the years have progressed (the
last 2-3 years) my control has become more and more difficult to maintain -
I suggest that the body, in time, overcomes external controls, but my
control is still much better now than in 1980 and I have warnings of low
blood sugars, which had been lost in the twenty plus years of diabetes
before my first use of a pump. I must note that I did not finish my maths
degree because the consultants at The Radcliffe (Oxford) insisted on
changing my insulin (from PZI & Soluble to Monotard) which caused me to
have hypos every other day, so my memory of standard deviation may be not
as good as it should.

It is interesting to see some names I recognise amongst those who sent
emails (Morag McClaren & Ray Morrisey) whom I suspect will not remember
myself but with whom I have spoken. Re Ray Morrisey when I spoke to him he
was showing a planned 24 hour blood sugar monitor to be released in Britain
this year, by Minimed (via AMT) it does not rely on blood for the
measurement and is attached to the body in a very similar way to pump
infusion sets. My thinking is that for people already using a pump there
could be great benefits and few discomforts, although I think it needs a
little modification to be made really suitable.

Re disposable insulin pumps, surely that is what Disetronic pumps are
anyway as they are only designed to last two years. Nobody has given me a
logical reason for this situation and for this reason, when my current pump
gives up I will think very hard before considering another Disetronic, I
also feel that if they so wished the batteries could be made to last a lot

John, re your comment about being British and living in Germany, although
the health situation/provision in Britain is far from as desired, were it
not for diabetes I would be living in Russia (if you did not already think
I was crazy you probably do now) because the people and the country are
extremely friendly. But if I was to live there diabetic provision is
virtually nil and pumps are non existent.

All the best,

Jeremy Grainger

mailto:email @ redacted

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