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NICE

Dear All,

I have had the following communication from NICE regarding the likely date that we will hear about the outcome of the March ACD meeting and resultant FAD. It looks like we will not hear anything until after May 10th at the earliest.

Sandy

 

  '.....In order to avoid providing a focus for political debate or detract attention from the general election campaign, NICE will not publish any guidance document, either in draft or final form, after the announcement of the general election. Consultations that have started before the election is called will continue as planned. Not publishing guidance during the election period will not significantly lengthen NICE’s decision-making for guidance currently in development.   As a result, the Institute has decided that until Monday 10 May 2010, it will not:

  • issue any draft or final guidance documents (i.e. Appraisal Consultation Documents and Final Appraisal Determinations) for consultation
  • publish any guidance. 

This action, as you will appreciate, has the effect of materially delaying work in progress on the appraisal ofDasatinib and nilotinib for imatinib-intolerant chronic myeloid leukaemia.'

We (NICE) don't want politicians breathing down our necks on this one. But we (patients) want the politicians to be dealing with the problem because NICE doesn't work properly.   Whichever flavour of politician one likes, this is EXACTLY the time to keep it in their minds. Make them make promises.  This is about the NHS, NICE, healthcare funding and cancer care in the UK generally - not just our drugs (though they are excellent examples) - so absolutely I think if we have concerns we should be voicing them loudly to candidates.  It needs reform. 

Non affiliated political broadcast/rant over. 

"We have been told by the government to hide in a cupboard until the election is over in case we say or do anything that might lose them votes"

Hi All

This is so hard and unfair making those of us who's future depends on this decision, wait any longer! It reminds me of turning up for my blood results in the early days, to be told they had not arrived or had been lost and so I wouldn't find out until my next appointment in another 6 weeks.

Let's hope that the best things are worth waiting for this time!

All the best

Chris