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Re: [IPk] Insulin pumps and the lack of them!! and lack of knowledge


You are quite right, Gloucester Royal Hospital does indeed support pump
patients. They have over 30 adults on pumps!

Recently,  I was invited by the Diabetes UK South Gloucestershire Support
Group, to go and talk to them about Insulin Pumps. This I did on 10th July
together with John Hughes from Disetronic, we were accompanied by the two
Diabetes Specialist Nurses (Adults) from the Gloucester Royal Hospital, Mrs
J Haddon and Mrs V J Parfitt.

The meeting was extremely well attended and the level of audience
participation left no doubt that question of pump therapy was in the
forefront of many peoples minds.

This particular support group has endeavoured to help the pump programme
within Gloucestershire for a while now and they are committed to continue
with their fundraising to assist their members. However, like INPUT their
long-term aim is for funding to be freely available through the NHS.

I would suggest that your contact at the children's support group contacts
the local chairman of Diabetes UK, (Peter Hodgett, Tel: 01425 722930). I am
certain that he will do all he can to help.

Should you wish INPUT to get involved, please let me know. I will go
anywhere to talk about insulin pump therapy, particularly to paediatric
meetings. We need to spread the word!

My experience has shown that "patient power" works. The more the patients
ask for a treatment, the more the medical professionals have to sit up and
take notice. When I first went in the pump over 4 years ago now, there were
only 180 pump users in the UK. Now there are around 1300 and over 100 of
those are children. This is a tremendous increase considering the lack of
funding, coupled with a certain amount of resistance from the so called

Pump therapy is on the move, and the more we talk to others about it, be
they patients, professionals, MP's or whatever, the faster the movement will

I am convinced that in their wisdom NICE will recommend funding for pumps.
However, I don't believe that that will be the end of it! In my view I
believe the hardest task will be to convince many of the consultants,
nurses, dieticians etc of the efficacy of pump therapy. As many of you have
found, this is no easy task.

Fortunately, there are quite a few "enlightened" professional, who like us
believe in pump therapy. They are doing their utmost to convince the others.
You will all have heard of PUMP, for those who haven't;

On 8th September 2000 a meeting was held in Harrogate for health
professionals interested in taking insulin pump therapy forward in the UK.
Following this meeting a group called PUMP was formed. PUMP is comprised of
Consultants, Diabetic Specialist Nurses, Dieticians and other Medical

Their aims are:

To provide education, support and to facilitate the use of pump therapy in
the UK.

To arrange biannual PUMP forum meetings.
To provide education about all aspects of pump therapy for multidisciplinary
team members.
To support Forum members and others embarking on insulin pump therapy.
To establish and maintain a national register of insulin pump users in the
To promote research and audit of insulin pump therapy in the UK.

What we need to do is to keep pressurising, if you need any help, just
contact INPUT, we have so much evidence to help support your case, including
all the evidence presented to the Health Care Finance Administration in the
USA resulting in the Medicare Coverage for insulin pumps.

For those of you who are still trying to obtain funding, don't forget, the
same infusion sets used for insulin pump therapy are also used in other
treatments and are being funded by the NHS. These include:

Continuous Diamorphine for pain control.
Infusion of Desferol for the treatment of chronic asthma.
The treatment of Thallasemia.
Heparin Infusion.
Hormone Infusion.
Anti-Emetic Infusion.
Subcutanuous Re-Hydration.

It is estimated that about 60-70% of infusion set usage is into non-diabetes
markets and are being funded by the NHS. It would seem that not only do we
have "Post Code" prescribing, but we have discrimination against diabetics
as well.

Finally, having joined the long winded brigade, I'm going to go and get
myself a beer!

But don't forget, if you need any help or would us to come and talk to your
group, all you have to do is ask.


John Davis,
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml