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

We had problems trying to get Sam onto his pump. Our consultant at our local 
hospital referred us to the Manchester Diabetes Centre as he was aware that 
there were patients using pumps there. What was not understood was that 
there were only a few (I think 3 or 4) children using pumps and for a host 
of reasonable (to them) reasons they didn't want to take on a child of Sam's 
age when we lived 50 or so miles away from the hospital. So we did have to 
go through meeting the team in Manchester and being rejected which was very 
distressing.  Then through some suggestions from John Davis and Jill Jones 
from Medtronic I did cold call several large hospitals in the north of 
England and spoke to  Paediatric DSNs to guage their reaction and approach 
to pump therapy. I did find 3 DSNs which discussed our situation with their 
consultants and confirmed that they'd be sympathetic to our request but 
would obvioulsy need to see us first. We decided that Harrogate would be the 
preferred choice because of Sandra Dudley's involvement with PUMP (running 
courses on pump therapy for medical professionals), our consultant was also 
happier to refer us to them. So that's what we did. So we're under wonderful 
Harrogate for Sam's pump treatment. We've also received much needed support 
from Jill Jones. It certainly hasn't been an easy path and isn't for the 
feint hearted. (By the way when we went ot Harrogate, there was a lady who 
had travelled from the south coast to be put on a pump!)
I'm not very good at short consise emails, am I?!

>From: "Jackie Jacombs" <email @ redacted>
>Reply-To: email @ redacted
>To: "Insulin Pump List" <email @ redacted>
>CC: <email @ redacted>
>Subject: [IPk] Insulin pumps and the lack of them!! and lack of knowledge
>Date: Tue, 24 Sep 2002 22:58:21 +0100
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>I run a local support group for parents of children with diabetes. After 
>local newspaper printed an article about Sasha and diabetes I was contacted
>by another group from the nearest big town, Gloucester Royal Hospital
>children's diabetes support group.  They asked me to come over and see what
>they did as a committee and see if perhaps we could combine groups at some
>points and get speakers in.  I was quite eager to talk to someone who used
>that clinic as I had read on the Insulin Pumper site that Gloucester had
>supported some people on pumps. Gloucester also have two paediatric 
>nurses and Cheltenham has no paediatric nurses.  Anyway one of the other
>parents at the meeting was asked about getting someone in to discuss pumps
>and the PSD nurse who was there also  said "we wont be going down that 
>there are just too many problems" she said that  Gloucester Royal wont be
>putting anymore people on pumps, adults or children!!!  She said they had
>one child pumper at Birmingham and they were doing any more there either.
>She just didn't want to know about pumps and to make matters worse didn't
>actually seem to know anything about them to even make a judgement.  She 
>muttering about ketoacidosis and then said, what on earth would happen if a
>young child decided not to eat!!!!!! you'd have a big problem then!!!!
>What!!   I thought the whole idea about pumping was that you could take 
>into account!!  As far as I know you have much more of a problem when you
>give a child an insulin  injection and then they decide not to eat! I've
>been there with Sasha in the past.  When she was talking about pumps she
>obviously had never really spoken to anyone who used one at all.  Someone
>then asked about this new insulin Lantus and she didn't know much about 
>either.  I could sort of understand that, but not to know anything about
>pumps seems terrible, I mean they have been around for years.  I was really
>hoping that I could transfer to Gloucester at some point and that they were
>pro pump but it seems this is now not to be.  I was very depressed.
>Have others had to travel great distances to find a hospital who would help
>them.  If so how do you get transferred and how do you find out if they 
>take you as a patient??
>Jackie Jacombs
>email @ redacted
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