You are here

update

Yesterday I had my clinic appointment -still pcr negative- phew!  in the battle with NICE I sometimes forget I have CML! but then I suddenly remember that even transplant patients can relapse.

Took some fliers down with me to advertise the petition- which they allowed me to put on the notice board- also some of the doctors there promised to sign (lets hope they remember)

Petition is now at a very healthy 4163 and growing daily- some great heartfelt comments too.

4 leading UK Clinicians have agreed to send a letter to the editor- Telegraph- we have coordinated with the journalist on this- and understand the letter will be published on Monday, with another article on the present battle included too.

EDM has 12 signatories- still waiting for my MP (libDem) to contact me- I will book an interview with her for next week and see if that works!

Sandy

This morning we have 4616 Signatures - I'm beginning to believe we might even make it to 5000!

See also Martin Beckford's second article on this in the Telegraph 

http://www.telegraph.co.uk/health/healthnews/8527110/Expert-clinicians-oppose-leukaemia-drug-refusal.html#disqus_thread

4780... tonight.

The numbers are looking good, is there anymore we can do to boost the numbers. I have posted on facebook/group etc, got my friends/family to sign my work has broadcasted the petition via e-mail to the whole of its staff (and i have to say my work are being very supportive)

I have wrote to my m.p/ Health minister etc, commented on the nice page, advertised on radio. Sandy can you think of anything else i can do to push this more for us all. I will try my best to complete any suggestions.

Thanks for all the hard work Sandy we really appreciate it

x

we are nearly at the magic 5000. we have around 50 or more signing every day- with around 29 new signatures since 11am this morning! Naomii you are doing great.. this is a team effort and with Neils BBC TV piece yesterday the momentum is building from all points- letters to MP's, Ministers, Early Day Motion, Clinicians letter in Telegraph, comments on NICE website, Telegraph articles x 2, twittering, facebook page links, our story feartured in the European Cancer Patient Coalitions weekly Newsletter last Friday, plus the petition.....

We have a few days left.... we are busy writing our comment to NICE re: dasatinib and nilotinb as 1st line use (deadline tomorrow) and then we have until 5pm Friday to finish our commnet to NICE re: ACD for IM resistant. 

I will download the petition signatures on Friday and we will then send the hard copy to the Sec of State plus others...including NICE appraisal committee.

Several of us are still waiting for confirmation that we have been accepted to attend the committee meeting on June 9th. Some people have contacted me about their willingness to protest outside the NICE offices that day- there is a lot of support for our campaign.

Thanks to you and all our members for such great committement.

Sandy

Best... Sandy

Wow 4983 fantastic, people are showing great support for this lets hope NICE change the decision

Thanks

and to everyone who has contributed to this cause. I'm so angry about NICE's stance on this matter. NICE needs to be disbanded and quickly, because quite simply they are out of touch.

What a fantastic response. Well dnoe everyone and a very special thank you to Sandy. Hopefully will get a few more before tomorrow.

Steven

5132 now.

.