Thanks Neurochic
I have been in touch with Farenha at Rare Disease UK for over a year. I did suggest an suggested working in tandem getting MP's from both groups to join each other but she wasn't interested. I've also been I'm touch with both the Pain Foundation and Chronic Pain Policy Coalition and was stunned to find out that neither of them has a list of the pain conditions they support however Lord Luce who is heavily connected with the CPPC has asked for a personal meeting.
If you don't agree with some of the things then we need you working with us, I've never claimed to be 100% right just done the best I could on my own