Hey Daniela
UCLH are not more for pumps. I may have given you the wrong impression of them. They are a full and proper paediatric care team. They are what our teams down here (in both hospitals) should look like. It is a choice of whether to travel or not and if you choose not to travel then that is your choice and its fair enough but I wanted you to know that it is a clinic that does everything (except mixed insulins of course) and Graham would thrive brilliantly under them.
However I have had a meeting recently with the money lady at the PCT (last few weeks).
She is just finalising the little details and then we have a contract with Brighton for a pump service. So the kids down here will get pumps finally but at Brighton as our teams are just not ready to even know where to start. I then mentioned to her that I had a friend (no names) who was refused a transfer to Brighton. She found that very odd and said it was patient choice. I then said that I had heard that Pembury were not taking patients either. She said that was wrong as it was under her PCT and if you wanted to transfer to Pembury you can for a pump or not for a pump.
We also have the two DSN's now, that bit of lobbying finally worked. We have the one back who went on secondment (unfortunately) and the other one that was doing her job so they are both now there with a contract.
I am hoping that you are now doing full carb counting and injecting for every single carb that Graham is eating. I know he is a grazer but he will have to learn and if he doesn't want a pump, then he will have to start making choices of eating and injecting or not eating and therefore no injection. I know he is a child but they have to start sometime and learn. I would not let Jessica graze unless she agreed to an extra novorapid injection for the carbs. He is a prime candidate for a pump of course as a grazer, it is perfect for them. I know you say he doesn't want a pump but how many children has he seen with pumps? Has he seen the kids running around with them and playing and eating when they like etc etc. Maybe you should start coming to circle time so that Graham can make a proper decision by watching others his age and seeing what they can do.
I can't remember how old he it now, but at the age of nearly 7, I didn't really give Jessica a choice. I made her have a pump but whilst I let her sort of choose and say yes, I had pushed her gently and persausively in that direction as I knew it would benefit her.
You can try Brighton again and if you like I'll contact my money lady at the PCT for you and if in time Graham wants a pump them you will be in the right place to get one and its not too far.
If the team here haven't showed you how to carb count properly get on to them again and again and push them big time. They should have given you a carb to insulin ratio and should be helping you tweak that under you have it at the correct amounts which will differ throughout the day. They should have given you a correction factor as well ie how much will one unit of insulin bring Graham's levels down by ie 1 unit will lower him by 5 mmol.
If they haven't given you all of this and then work with you at sorting it out, go and sit on the Daniela. I know you are good at that so go and use your Italian magic on them and make them work for their damned salary.
Let me know how you get on. They should be helping you a lot more now as well as you are pregnant as they will know you will get more tired.
xx 🙂
