Two year wait.

[rachelha]

I have been in touch with the DSN in charge of pump training in my area. I missed my pump training slot in august as I was heavily pregnant. I had previously been told I would have a place on the first training session after giving birth. I know there is a session in November as a friend is on it. They are now saying hopefully I will be trained in march 2011.

That will be 2 years from being put on the waiting list. It is also dependent on funding being confirmed for next year. I had naively assumed that the funding from august would be kept aside for me, but obviously not. I will be absolutely furious if the funding is cut, and I don't get my pump at all.

I am so fed with waiting. I can see that possibly November would gave been a bit too soon after giving birth. I think starting on a pump and breast feeding a new born would be hard, but march!! Not impressed at all.

 

[tracey w]

Sorry to hear that. I know you have been waiting so long, its difficult.

 

[Ellie Jones]

It sounds like another clinic/PCT acting ilegally when it comes to funding of pumps...

NICE guideline give a criteria, if you fit one or more of the criteria Note I said one or more, you don't have to meet all of them and your consultant makes the clinical disision that you do... The PCT is legally bound to provided the funding..

It is ilegal for the PCT to set any limits to funding or use waiting lists for diabetics who fit the NICE criteria...

I would contact your consultant or diabetic team, point out that it's already be agreed that you have a clinical need for a pump, under the NICE guidlines making you wait for funding etc is ilegal, also have a word with INPUT they are very good indeed..

Don't give up, I battled for 3 years every inch of the way to get my pump, at times it felt like I was searching for the holy grail... And I would never achieve it but I did...

When I started, my surgery DSN, said they are as rare as hen's teeth in our area, so don't get my hopes up too much as it was very unlikely to happen!!! Because of what I did, she now will refer others to the pump consultant..

She has asked if I can be on hand if needed either to talk or support other's through the process.

 

[rachelha]

It sounds like another clinic/PCT acting ilegally when it comes to funding of pumps...

NICE guideline give a criteria, if you fit one or more of the criteria Note I said one or more, you don't have to meet all of them and your consultant makes the clinical disision that you do... The PCT is legally bound to provided the funding..

It is ilegal for the PCT to set any limits to funding or use waiting lists for diabetics who fit the NICE criteria...

I would contact your consultant or diabetic team, point out that it's already be agreed that you have a clinical need for a pump, under the NICE guidlines making you wait for funding etc is ilegal, also have a word with INPUT they are very good indeed.

Don't give up, I battled for 3 years every inch of the way to get my pump, at times it felt like I was searching for the holy grail... And I would never achieve it but I did...

When I started, my surgery DSN, said they are as rare as hen's teeth in our area, so don't get my hopes up too much as it was very unlikely to happen!!! Because of what I did, she now will refer others to the pump consultant..

She has asked if I can be on hand if needed either to talk or support other's through the process.

Ellie, thanks for your response. Unfortunately I have already been down all these avenues. I am in Scotland so it is the sign guidelines thAt apply (I think they are just about the same as NICE). I have been in touch with joh. From input who put me in touch with IPAG (the scottish equivalent of input). I have written to my MSP, Nicola Sturgeon, and the head of the PCT, but without any success. The issue is the lack of staff who can do the training.

I did speak to someone from advanced yesterday as they are doing some pump training at the sick kids hospital in Edinburgh. I need to decide if I wnt to try and see if they could do the training for me, which I would have to pay for myself, and the NHS pay for the pump.

I am not sure how much the training would be, but I have a feeling that with reduced pay soon due to maternity leave, and then nursery fees to pay, we would not be able to afford it, and by the time it was all organized I might have stopped breast feeding, which is why I really wanted it quickly.