Hello, my son is 6 and was diagnosed with type 1 in January this year. He is on MDI and we?re doing carb counting. We don?t have a DSN. We had one for the first three weeks, then she left and hasn?t been replaced since. We?ve had to do all the learning and problem solving ourselves with the help of books and the internet. For urgent questions we contact the ward. We are very keen to start our son on the pump but at the last clinic we were told that without a DSN the process could not start. Our next clinic is at the end of June and I was wondering whether we could do it without a DSN. If anyone could say anything about the role of the DSN in the pump process, from applying to actually pumping, I?d be grateful. Is it possible at all to do it ourselves?
Many thanks.
Hiya, well done on being really proactive in such a short period of time!
In my opinion, so ignore me if you want lol!, i would be changing hospitals ASAP. It's just not good enough that there is no DSN. There should be at least 1 DSN to 70 odd children with type 1 in your hospital. We transferred to another hospital, our old one is 5 mins down the road but the care and support was dreadful. We taught ourselves to carb count and we put Rose on MDI ourselves as her bloods were terrible! We now travel 45mins to a hospital that has meant Rose is now pumping and we get better care. Your GP or consultant can refer you to another hospital, you have a patients choice, and under the NICE guidelines they are failing you at present without having a DSN there
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Some children have gone on pumps and it's the pump companies rep that has done the process but i think the DSN has been needed later on for support and advice. When starting pumping it is really really hard work, but the benefits quickly outweigh the negatives, i think, again, in my opinion, that you need the medical support staff behind you and if you are not getting it from your current team then you need to get it from somewhere else
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If you haven't seen it before here a fab website and mailing list run by parents for parents of children with type 1.
http://www.childrenwithdiabetesuk.org/ I would really join the mailing list as there is a wealth of info from other parents that have been in your situation.
Hope i haven't been too strong!
Any questions, feel free to ask
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take care and good luck!