No chance of a pump.

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ruthelliot

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Had another hospital appointment with Ben this week. We've been in discussions about a pump ever since we moved to Yorkhill hospital at the beginning of the year. There has been much discussion about funding and letters sent to our own health board - we are in Lanarkshire but they have no paediatric pump service, in fact no actual paediatric endocrinology dept hence we asked to go to Yorkhill which is in Glasgow. Glasgow requested funding from our prev consultant who after 5 months has yet to reply - not holding out any hope. While our team have said they would be fully supportive of Ben getting a pump and feel his control would improve with a resulting lowering of his hba1c the funding situation makes it outwith their control. Its very disheartening to hear them say there is a treatment they believe would be better but we cant have it. I think given the current financial climate/cutbacks etc this is not likely to change anytime soon. So there we have it -though they say that under the circumstances we are doing very well with him - though dont think they're likely to tell us we're rubbish! Anyway just wondered what other people think of his control - he has been diagnosed almost 2yrs and his hba1c is 8.2. This is the lowest its been and I dont think we can get it lower - this is already with a lot of work and lots and lots of testing. I know adults worry about having a high hba1c for any length of time and I know its harder to get it down in kids but surely if its bad for an adult to be at this level for 2+ years its equally bad for a child? I know we should try not to worry about complications but I just feel by the time he is 18 he'll already have had it for 17yrs - thats a long time to keep complications at bay. Any thoughts??
 
Hi Ruth, very sorry to hear of the problems you are having :( Apologies if you've already explored this, but have you been in touch with the Input people at http://www.ipagscotland.org/ ? Whilst it is true that pumps are expensive to fund, surely quality of life ( for all of you) should count for a lot?

I moved this to the general message board as it concerns pumps, children and HbA1c's! 🙂
 
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Manging a child diabetes is a lot more difficult than an adults, there is a saving grace though that during childhood their bodies tend to take the battering a lot better than adults.. Most children do come through the period reasonably unscaved surprisingly..

I know the SNHS is slightly differently run to this side of the border etc..

Have you contacted INPUT concerning your plight they very good..

If you haven't already, contact your MP and SMP, get them to help with tackling the funding issues, I would also be very tempted to get the papers involved to put as much preasure on the trust as possible..

Keep fighting and you will ahchieve in the end...
 
Thanks for moving the post notherner - wasn't concentrating then couldn't figure ouy how to move/delete it myself! Have only really dealt with our msp - she seemed very helpful and concerned initially (she is apparently very involved in fighting for better diabetic care/pump funding) but she seemed to lose interest pretty quickly and was very easily fobbed off with the standard reply from the health board but will check out that link thanks.
 
I'm sorry to hear about your problems getting a pump. Just a suggestion, have you looked at the pumping thread? Some of the forum users had to do all kinds of things and jump through hoops of fire to get their pumps, but they got them, so it's not impossible. Good luck with it.
 
Just to comment n the complication risk. I realise that Ben is 3 and won't really have much interest in his diabetes and zero concern for the future (other than what's for tea!).

I would doubt that his complication risk is any higher than many on here unless he has special circumstances. I've been diabetic for 32 years, since I was 13, and am still, basically, complication-free. The same applies to many other long term type 1s on here apart from a few who had rebellious teenage years which I hope Ben won't go through. He will have the advantage that his diabetes will be the norm and hopefully not something to resent.

All that said, I can imagine the practicalities of injecting and carb counting are horrendous and hypos and the like must be a nightmare.

Good luck with your quest.🙂

Rob
 
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