Dear All,
please contact me privately so that I can put you in touch those interested in listening to your stories.
I think we need to be very strategic and clear in our arguments.
I am working on a template letter... but really you just need to fire them off asap to your local MP's and the Secretary of State Andy Burnham. Of course you can play the political parties off against one another and contact Gordon Brown and David Cameron... for those letters you need to make them think they will lose/gain your votes. For NICE you need to be more objective. please look at Phil B's post on this on the string below.
I have had several meetings today and will be arguing on several points of conflict in the NICE ACD. The call for double blind clinical trials is unethical and they know it. Such trials could never be conducted.
Somewhere in the NHS Cancer plan is the strategy for rare cancers ... unmet needs, orphan drug status etc. I will try to research more on that tomorrow and let you know what I find. Please be aware that this forum is open and I am sure will be a focus for interested parties.
Local news media is a good starting point as the nationals often pick up interesting stories from them.
more thoughts tomorrow.
Sandy
