Hi Everyone,
Is anyone currently having a sub-optimal response to imatinib who would be willing to talk to the media about themselves and NICE’s recommendation?
For those who don’t know me, I garnered quite a lot of media attention for this campaign last time around (Daily Mail, BBC, ITV, London Evening Standard, various local newspapers around the country). With the contacts I made I’m hoping to do the same again this time around. However now that I’m on nilotinib and results and side effects are lower my story isn’t quite so urgent, so I was hoping to include someone else who’s in a similar position to me last time around. Someone who’s currently on imatinib, but is having a sub-optimal response. This way, if they want to include my story as an ongoing narrative, we can say how nilotinib has improved my life and how NICE’s recommendation may wreck that of another (and many others).
I’d also like to highlight what else I did last time as I feel it was quite effective, and it may help others who want to help but are a bit lost about what to do:
- Write a letter to your local MP.
I realise this can be quite difficult, but once you have a letter it can be reproduced and sent on to other ministers (or passed on to friends and family to send on to their MPs). Last time around I wrote a letter that Sandy used as a template letter. I’m going to slightly modify it this week, and I’m happy to send it to Sandy and see if she wants to upload it again. You can find your local MP at http://findyourmp.parliament.uk/
- Meet face to face with your local MP.
Most MPs have surgery at least once a week/fortnight. As much of an impact that a letter will have, this is magnified enormously by meeting face-to-face. Last time around I met my then local MP, Vince Cable, which helped keep my story in his mind. He even spoke to the media for me.
- Send your template letter to everyone you know (on facebook, email, or any other medium) to send to their local MP. And make sure they send it on to everyone they know to send on to their MP.
I sent a template letter to all my friends and family on facebook and in my email addresses. I asked everyone I knew to send the letter to their local MP and, very importantly, to ask all they know to do it. Based on who got back in touch with me over a thousand people sent this letter to their MPs. If we ALL did this, MPs would be bombarded by this campaign, and couldn’t ignore it.
- Modify your letter and send it to David Cameron, Andrew Lansley (Secretary of State for Health), Nick Clegg and Ed Miliband (and maybe even Vince Cable, who’s very vocal about the Tories at the moment).
- Write a letter to the letters pages of the national newspapers (email addresses are easy to find – I’ll publish them if needed later) and include a photo if you are directly affected.
- Write your comments on NICE's ACD at http://guidance.nice.org.uk/TA/WaveR/99/Consultation/DraftGuidance by 27th May. Get your family to do the same.
Good luck everyone.