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Re: [IPk] Balance article / FRUSTRATION / WE NEED YOUR HELP

OK , so we are all frustrated by the lack of pump awareness in the UK.

What we need is more data and to generate more noise .
Studies are useful and  we do now have several  good pump studies   but
these were mainly conducted in the USA , France and Germany .

What I would like to see is a srong collection of UK case histories
justifying the clinical and Quality  of Life benefits of pump therapy .

These could be presented to diabetes centres who are considering starting
pump therapy  or to Health Authorities when explaining the benefits and
frequent cost savings of pump therapy.

If each of you were to write a case history we would be able to assemble a
powerful tool that would assist diabetics and professionals in  justifying
the need for insulin pumps in their areas .

Information that we would need is as follows :
- Date of birth
- Duration of diabetes
- Type 1 or Type 2
- Sex
- Therapy prior to pump [ during previous year ]
- Daily insulin usage prior to pump
- Hba1c prior to starting pump
- Status of diabetic complications prior to pump
- Frequency of diabetic excursions prior to pump [ severe hypos and DKAs ]
- No. of hospitalisations per year prior to pump
- Reason for starting pump therapy
- Hba1c with pump
- Daily insulin use with pump
- Frequency of excursions since starting pump [ severe hypos and DKAs ]
- Status of complications post pump
- General well being , Q of L with pump

The case histories should be concise and easily read  .
Any thing else that we should add ?

I am convinced that this information would help us to enhance pump awareness
at the clinic level  and may allow us to get the attention and support of
the BDA .

If your response is good we may be able to prepare an article for a diabetes
journal or submit an abstract to the next BDA meeting .

Are you prepared to help ?

-----Original Message-----
From: John Neale <email @ redacted>
To: email @ redacted <email @ redacted>
Date: 26 June 1999 14:21
Subject: Re: [IPk] Balance article

>Diana Maynard wrote:
>> Hi folks
>> Did you all see the article on pumping in Balance (finally!)?
>> Love the pic, Eleanor!
>Di! Thanks for spotting that. No, I haven't seen it yet. It was several
>months ago I gave the interview.
>Steve - Could you extract the text and post it on your site?
>Do they quote Dr John Pickup saying that pumps are too complicated to
>use? That was in the first draft I saw. And that most people really only
>need one basal rate? That is the biggest load of drivel I have ever
>heard... even by doctor standards. Hands up here who is well controlled
>and uses just one basal rate? The IP survey shows most people use 3...
>> Actually I wasn't too impressed by the article - the only thing
>> pro-pump about it was the testimonies of Eleanor and John N. the rest
>> of it seemed to gice the impression of "a few people who can't control
>> their diabetes do better on pumps, but it's all far too complicated
>> and unnecessary for most people to handle, and it costs far too much
>> to make it worthwhile."
>It is so depressing. It's like bashing your head against a brick wall.
>All we can do it seems is give testimonies and keep talking.
>Last week a had a long chat with Edwin Gale, who is the diabetes boss
>for the Bristol area. He has ultimate responsiblilty for organising the
>diabetes care for about 17000 people with diabetes. He knows me quite
>well, and I spent about an hour and a half in his office chewing over
>various matters - not just pumps. He knows how the pump has improved my
>quality of life. He knows my diabetes wasn't previously out of control,
>but that I just wanted better. Yet he refuses point blank to endorse
>pump therapy for general use. There is simply no research proving
>benefit for the general population he says. We can argue the finer
>points of what research does or doesn't prove what - but at the end of
>the day, are we all here freakish weirdos who for some bizarre reason
>find we can get far superior control on pumps than on injections? And
>the other 99.999% of the diabetic population can't? I think not somehow.
>Given a million pounds more, he would spend it on more drop-in centres,
>more community out-reach, better healthy living advice. The unglamorous
>things like that. That, he feels, will buy far more "units of health" in
>the long run than splashing out cash on expensive fancy gadgets like
>pumps, no matter how "wonderful" I may find them to be.
>How can you argue with socially just logic like that? It's very hard.
>And it cuts to the heart of a state-run health system. Private money?
>Edwin gets very animated at the suggestion that the rich should have
>access to better healthcare than the poor. But ultimately I think he
>will be disappointed. We are already voting with our feet. Those in
>Britain who get your supplies paid for - lucky you. Those that don't,
>well, presumably you have all made savings elsewhere in order to find
>the cash.
>My aim is that everyone - and every doctor - should know that pumping is
>a viable, even optimal, alternative, and that specialised pump centres
>should be accessible all over Britain. If funding for pumps and supplies
>is unavailable, then find your own cash, either from your own pocket or
>from healthcare charities. But the current ignorance among healthcare
>professionals I find deeply offensive.
>Michael - how do these sort of problems look from a Californian
>If anyone is confused by my situation, I moved from Britain to Germany
>last year. German healthcare is funded by compulsory private healthcare
>insurance. And all insurers must fund pump therapy if a doctor
>recommends it. And as a result, over 12% of people on insulin use pumps
>If anyone can shed some light on this intractable problem, and plan a
>socially just way forward, I would very grateful and will sleep more
>mailto:email @ redacted
>Insulin Pumpers website http://www.insulin-pumpers.org/
>for mail subscription assistance, contact: HELP@insulin-pumpers.org

Insulin Pumpers website http://www.insulin-pumpers.org/
for mail subscription assistance, contact: HELP@insulin-pumpers.org