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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
interested!!


> 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
different..


>
> 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,
> INPUT.
> -
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