Off to see my MP

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What ignorance! :( Sorry to hear this Susan, this sounds like selective and wilful blindness to the facts of the case 😡
 
Bugger! How frustrating!! 😡
 
Northerner said:
What ignorance! :( Sorry to hear this Susan, this sounds like selective and wilful blindness to the facts of the case 😡
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I suspect that if they admit I'm not T1 they'll not have a leg to stand on.
 
pottersusan said:
I want to SCREAM 😡

Just got an email from my MP with the response of the Chief Officer of the CCG:

It keeps on about me not being clinically exceptionally different from any other Type 1 😡😡

  1. I'm not Type 1
  2. If I was Type 1, how many other T1's are missing their pancreas, stomach etc?!
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Funny enough that's what was said on my rejection letter as well. Silly bar stalls couldn't differentiate between a diabetic taking steroids and a life threatening condition requiring steroids(Addison's disease)

Do not labour the point that you do not have type 1 diabetes as only type 1's with hypo unawareness get mentioned in dispatches in the NICE guidelines.
Bottom line is though they do not have the money to cough up for sensors so will fight tooth and nail not to provide them unless NICE say's so.

I've been there and worn the Tshirt.
 
I'd be tempted to extract the nice criteria for consideration of CGM and ask them for evidence of why you don't meet them. Having read the criteria I think they'd find that very difficult. If nothing else it'd put the wind up em. The fact that you're not substantively different (in their opinion) from any other type 1 is ridiculous, but I doubt you'd get much benefit from appealing to their common sense. Then I'd submit an FOI and see how many CGM requests the CCG have had, and how many they've granted, the age range of the recipients, and the total percentage of funds allocated annually to CGM (you could get someone to do it on your behalf if you don't want them to know it's you). Then if that still didn't put the wind up, I'd go to my local newspaper and see if they'd pick up the story. There's a great human interest/underdog angle there. Did I mention that I'm vicious when riled? Of course the word "consider" is difficult in the guidelines but seriously how daft would they look if they trotted out the "you're no different to any other type 1" line in the press? I know it's slightly distasteful but sometimes a bit of a light on a disgusting situation can do the trick.
 
Im sure the local press would love to follow it up as ive been on the front page before😱, and ive got a journalist in the family - i'm keeping that in reserve.

An FOI request would be interesting! Hmmm. I wonder if it would be more helpful coming from me or someone else.

I think we would get on well @KookyCat - we seem to think along the same lines🙂. This sort of thing brings out the Rottweiler in me:D
 
KookyCat said:
Then I'd submit an FOI and see how many CGM requests the CCG have had, and how many they've granted, the age range of the recipients, and the total percentage of funds allocated annually to CGM .
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Any other ideas on questions for a FOI request, anyone? I wonder if similar questions re pumps might be interesting/useful 'cos costs are similar.
 
Sorry to read that your positive MP meeting has not produced fruit (yet!) but great that you are keeping going and that INPUT are getting involved 🙂
 
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