help please

[morgans-mummy]

as previously posted i wasn't happy with my hospital an asked to be referred to Leeds from barnsley BUT..

recently i have had a break through with barnsley morgan had the cgms fitted last week which was handed back in to the hospital on monday morning - they then rang me on tuesday saying they had looked at the results and seen that morgans blood sugars plummit from one extreem to the othere anyhow they made some allterations to the insulin and told me that the form had been sent to the PCT for morgan to have the funding for the insulin pump - i really feel i am getting somewhere with them now - but last night leeds rang me and offered me an appointment on thursday of next week

what do i do??

do i go to leeds even though barnsley have finally got there arses in gear??? & will i be in trouble with leeds if i tell them i no longer want to go??

 

[Red Pumper]

It's a difficult situation but my advice would be to keep the appointment with Leeds next week.

Just because Barnsley have got things moving doesn't guarantee that funding will be approved nor will it guarantee a better standard of care in the future.

From a quick look at your previous posts, it seems that your reason for wanting to be referred to Leeds was for a better quality of care, not just to obtain approval for pump therapy. That being the case, I don't think anything has changed.

Keep the appointment and explain to them your reasons was asking to be transfered. Leeds should have access to the results of the CGMS and will probably come to the same conclusion regarding the need for a pump.

 

[sofaraway]

I would have though that if the form has been sent tot he PCT for approval then once they have approved it then it doesn't matter who is providing the care/training etc, the funding will still be secured. Maybe INPUT would be able to confirm that.

I know that some parents do shared care so they access different hospitals for different things. I am an adult but do this, have used some services of my local hospital but my main care is elsewhere.

I think it's worth going to the appointment, just to see if the hospital suits you better.

 

[Adrienne]

I've answered on the parents thread.

Just to answer a couple of the other issues raised here.

If a consultant (wherever that consultant is) tells (not asks) a PCT that Jimmy or Jane is getting a pump and here is the bill then the PCT CANNOT refuse to pay. They have to pay. So when hospitals say to people well its up to the PCT. This is wrong. If a hospital says we can only fund 5 kids a year with the pump. This is wrong. The PCT have to find the money, this is in the NICE guidance very clearly.

You can tell Leeds that Barnsley has finally applied for a pump but you want the best care not half hearted care that Barnsley are offering. It makes no odds which hospital in as much as who owns the pump, (unless it is hospital owned of course) as it is the same PCT who pays.

As for once you have the pump, it is essential you are at the right hospital for the right care and training. It differs immensly around the country. I know that Leeds is great at training and after care, I know many many other children under Leeds. I can't comment on Barnsley as I know none. However from what you have told us, I doubt they are anywhere near as good as Leeds and you will get second rate care from them compared to Leeds.

Again I hope this helps. 🙂