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

John you wrote:

> 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.

Well,  I am amazed at that, the paediatric D nurse was very ignorant about
pumps and was extremely negative and actually told two parents that asked
that they would NOT be putting any children on pumps!!!  As I said she was
extremely negative and sounded as if even less hospitals were even

> 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.

Hmm! I just wish I had known about this meeting.  I don't suppose the
children's support group would have know about the meeting as they tend not
to have much to do with the adult group as the needs are usually so

> 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.

I will let the Gloucester group have this information.

> 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!

Maybe you could come down to Gloucestershire to give us a talk on pumping ??
I could get both the paediatric support groups together. We are not huge
groups.    Where did you actually hold the meeting on July the 10th???

I will be having a meeting with my local group in a few weeks and I have the
telephone number of the chairperson of the Gloucester Group I will speak to
them and see if they defiantly would like someone to come and speak to them
about pumps.  I will be in touch.

> 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
> "professionals".
> 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
> be.

I am sure that you are right about that John.

> 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
> Professionals.
> Their aims are:
> To provide education, support and to facilitate the use of pump therapy in
> the UK.
> Objectives
> 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
> UK.
> 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.
> Regards,
> John Davis,
> -
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