Have you or are you making individual funding application to CCG for T3? if so on what grounds 'rarity' or 'exceptionality' - any results?

Have you or are you making an individual funding application to CCG for T3? if so on what grounds 'rarity' or 'exceptionality' - any results?

please share with me (PM  if needed - click on my picture and then message me)

including which CCG?

Their formal response?

Your response?

GP or Endo led?

xxx juliat

5 Replies

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  • Hi juliat my application was by GP and a consultant endocrinologist. If you want to send me your email address I will send you a photo of my letter ......

  • Hi Juliat, no I haven't.  

    Good luck if you decide to do it.  Perhaps if everyone needing t3 petitioned their ccg's might it make a difference? 

    Linda96

  • Hi, have you tried to get funding and had it refused? Can you sue the CCG?

  • Hi Ellismay,

    Iv just read the telegraph report on the girl with narcolepsy and the judgment that she should have the drugs she needs. I applaud the common sense from the judge. 

    My gp got ccg approval for me to have vit d jabs once each year instead of tablets. I was low on vit d, 9! I was v grateful for that as I can't tolerate the tablets so ccg was ok on that occasion.  

    If a system has been put in place, then it has to show it's mettle or that it is wanting. It all takes time I know, but eventually it does change. Only by "testing" the ccg's current system can change be promulgated. 

    In the case of the narcolepsy girl the ccg's were shown wanting because the people making the decisions weren't medically qualified in narcolepsy. Perhaps there will be subtle changes to these Panels now that this has been flagged up (and publicised) so that at least one person is adequately qualified on each panel; then eventually there will be more adequately qualified. 

    The ccg moved the goal posts three times; .....  theyv been found wanting. 

    There's needs to be more and probably yearly "testing" of the system until the system speaks our  language. 

    I had to fight my fathers Victorian principles through argument (sometimes shouting) but eventually he saw that what applied to him as a boy in the 1920's didn't apply to me, a girl, in the late 60's. 

    Logical argument n testing of the systems will win!  Narcolepsy girl proved that. 

  • juliat - wishing you good luck in your endeavours.  I came across this and perhaps could be useful:

    telegraph.co.uk/news/2016/0...

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