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petition

The petition closes today (not sure what time) but has managed to attract 7,643 signatures which is a very impressive number given that it is such a small disease area.

I would like to thank Michele for going forward and putting the petition forward on the number 10 site.

A BIG THANK YOU Michelle from all at the CML Support Group.

Sandy

I'd absolutely like to second that sentiment. Thank you Michelle.

That's a good number of signatures in the end.

...I just hope they see sense on Wednesday!!

I was curious about the next step, given that the petition has now closed, so took a look at the Number 10 petition website where it says this....

Step 5: Petition close

When a serious petition closes, usually provided there are 500 signatures or more, officials at Downing Street will ensure you get a response to the issues you raise. Depending on the nature of the petition, this may be from the Prime Minister, or he may ask one of his Ministers or officials to respond.

We will email the petition organiser and everyone who has signed the petition via this website giving details of the Government’s response.

So lets hope that they consider it a serious petition and we get a response over the next week or so, and hopefully not just from an 'official'.

BTW. The FAD meeting is tomorrow in Manchester at the NICE offices there. They are due to publish the Final Appraisal Document on Wednesday 20th January. I expect it might be delayed but at least we know when it is due.

Sandy

No worries about the petition. I am just pleased that I could contribute something.

Michelle

I was wondering when they publish their decision. 20th January is sooner that I'd realised - quite pleased about that. At least we'll know where we stand (if, of course, there isn't too much of a delay).

Could you let me know where you discovered it was 20th January, Sandy.

I had a discussion with one of the other official consultees and that is the date we have been given 20th. I think it is usual that the decision is about one week after the meeting. However NICE are more often than not late with these things... probably only a few day but... just so we are aware that it might not be on the exact date.
However if the decision is still negative there is still a period in which we can appeal.... but not on content, only on process. Of course that is something that we feel we can do. Also, we are planning our next move should that happen.... but let's try and think positively for now.

Sandy