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JDRF Type 1 Parliament - any questions you'd like me to ask?

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AlisonF

Well-Known Member
Relationship to Diabetes
Type 1
I'm off to Westminster next Wednesday (25 April) to attend the JDRF Type 1 Parliament event. Basically a morning of lobbying followed by a question time session with the Minister for Science and an assortment of the great and the good from the diabetes world.

They?ll be taking questions on all aspects of Type 1 ? from insulin pump availability, to where research should be focussed, to the need to provide improved psychological support and anything else Type 1 related.

I?m planning to ask how the panel thinks we can best improve take up of new treatments such as insulin pumps and CGM, which all too often are invented and then left sitting on the shelf, inaccessible to the majority of people. If you?ve got a question you?d like me to ask - let me know.
 
Perhaps ask why even the basics of diabetes care are not adhered to, as in carb counting for all from day 1 of diagnoses. Point out the saving made by the NHS due to better understanding and control of diabetes if this was the case.
 
MY QUESTIONS

why is it so difficult to get a good standard of care for everyone?
why is it so difficult to get diabetes education in some areas?
 
I would agree with all of those so far.

FOr me, I can understand that pumps and CGM are expensive to run. So I can see why they're limited. But then test strips, needles, etc are all queried as if what we have isn't actually 'that' bad.

Could they acknowledge that it's a chronic condition and these are the basic tools for surviving day to day. We need NICE to amphasise that they should be available ad hoc rather than just 4 tests per day and a set number of needles, etc. If NICE don't recognise the need, we can't expect GPs to.

Research never seems to bring any developments down to our level so not entirely sure where the targets should be set. I'd rather have funds to control it than trying to cure it (which isn't likely to happen).

Good luck with it. 🙂

Rob
 
Test strip restrictions and/or reduction in choice of monitors seems to be being encountered more and more often these days.

Now I would support strips for *any* diabetic of any type who is educated and motivated to use them to improve their control, but there are a number of T1s who are being told they have to make do with only a handful of strips (presumably an edict initially directed at T2?), or are now required to use one brand of monitor (which may have accuracy/usability issues) because the beancounters have decreed it.

Hardly seems to be a step in the right direction.

Oh and can NICE pleeeeeease pull their finger out about CGMs. The UK is lagging sadly behind the rest of the world where pumps and CGMs are concerned.
 
Perhaps why many children end up in DKA and intensive care on diagnosis, why aren't GP's prepared to dip their urine/ prick finger and take parents concerns seriously when they attend surgery with symptoms ?

Why parents don't have access to something like a DAFNE course when we are expected to carb count and calculate doses of insulin etc ?

Why can't parents/families access the psychological support ?

Test strips again - we have had to chew on with for months to get more, why, we need them ?
 
And, of course, how the government sees the new NHS bill is going to improve the situation rather than worsen it, when GPs are counting their own pennies?

Rob
 
Hanmillmum said:
Perhaps why many children end up in DKA and intensive care on diagnosis, why aren't GP's prepared to dip their urine/ prick finger and take parents concerns seriously when they attend surgery with symptoms ?

Why parents don't have access to something like a DAFNE course when we are expected to carb count and calculate doses of insulin etc ?

Why can't parents/families access the psychological support ?

Test strips again - we have had to chew on with for months to get more, why, we need them ?
Click to expand...

I totally agree there about children ending up so seriously ill, because these dr's aren't listening to the parents ( I am still upset and angry because of such a dr at our hospital) As for test strips for my grandaughter Grace, she always has plenty,maybe she is one of the lucky ones, but not carb counting at the moment. Parents and other carers ie brothers/sisters, grandparents, do need help and support as it is a crushing blow to all concerned and some find it very hard to accept and to cope with. Sheena
 
Thanks for these. I very much doubt I'll be able to ask them all, but I will take a list of all of them, keep an ear out for what the answers are if other people ask a similar question and will focus on asking the ones that don't get asked by others.

I'll write a blog post on the main points of the debate when I get back.

In the meantime, if there are any more questions, just add them to the list.
 
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