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HELP My daughter is 10 and have been diagnosed type 1 for 16 months. We have recently finished a trial on an insulin pump which was successeful. We had it all agreed by doctors etc, but our hospital trust in Ipswich, Suffolk have suspended all new diabetic insulin pumps. Also, we have only one childrens diabetic specialist nurse who is so overworked and does not have enough hours in the day to do her job. She has had 5 newly type 1 children diagnosed in the past week. We are writing to the chief ex. at the hospital, has anybody got any more advice on what to do, please help. Tracy
I think you should contact input http://www.input.me.uk/
They may be able to give specific advice.
Other things you could do is to write to the head of the hospital trust asking why this has been done ie get the 'truth' in writing. Then I might contact my MP.
As there is a child involved you could contact the local press but that would depend upon how you felt about the attendent publicity.
Your PCT do not have the legal capacity to refuse insulin pump funding if your consultant/diabetic team have said your daughter requires it...
The PCT have to by law follow NICE guidelines they can not ignore them, and under the NICE guidelines it states if you fit the critera (you don't have to fit all, but some and the PCT can't pick which one they except either) that they have to fund insulin pump therapy, their budget doesn't come into it..
As Phoneix says, contact INPUT they will give you all the help that you need to sort this out, as the letter you intend to write needs to be sent to the PCT cheif exc, not the hospital's chief exc.. Sadly INPUT is very well versed in helping people in your situation to a sucessful conclusion, you get the pump
We had it all agreed by doctors etc, but our hospital trust in Ipswich, Suffolk have suspended all new diabetic insulin pumps. Also, we have only one childrens diabetic specialist nurse who is so overworked and does not have enough hours in the day to do her job. She has had 5 newly type 1 children diagnosed in the past week. We are writing to the chief ex. at the hospital, has anybody got any more advice on what to do, please help. Tracy
I can not help about the pump but just wanted to agree with you about the nurse!!!!
As nice as she is, i find her very hard to get hold of, any advice she gives me is the bare minimum and very rushed.
I know it is not her fault but her and the drs decided my daughter should be moved to MDI but i have not had the help and support that i need with it.
If i can do anything to help you though, let me know.
Or if you fancy a chat sometime or maybe meet up with the children as my daughter is only a year older then you.