The forms for this will be submitted this week. I have also contacted 2 Professors and 2 Doctors who are interested in forming a medical team to give evidence and advice.
If you want to be part of a group to shape the future of CRPS in the UK I need to know., It's taken nearly 5 years to get this far and I can't go further unless you get involved

Kev,

Is your mood really dead?

nearly fed up fighting on my own

Please what can I do to help you? I sent you a PM.

I need people in the UK to hep and support the fight to raise awareness

Best of luck in fighting for a good cause. I'm not in the UK though.

Kevscar

I have been honest before and said that I don't agree with many of the claims and various proposals that you have drafted as the basis for your suggested CRPS strategy hence I am unable to support your campaign. I only say again so that I am being honest and transparent about my position. Its not intended in any way as a criticism of you or the efforts you have made over the past few years.

I dont know whether you have had any involvement with or are aware of the existence of Rare Disease UK which is a national alliance for people who have a rare disease and the people who care for them. You may not be interested in having any involvement with their many political lobbying and other activities but they have been instrumental in pushing for the creation of an All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions. Rare Disease UK have significant resources and backing along with relationships with many other single-condition charities. This and their slick and effective presentation of what they do potentially makes it a relatively powerful and persuasive body in this whole area of policy shaping.

According to their latest newsletter, momentum is building behind this proposed All Party Parliamentary Group on rare, genetic and undiagnosed conditions. Many of their members have have taken the opportunity to write to their MPs and as a result, they say, the number of MPs and Lords who have expressed an interest in the group is growing every day. You may or may not feel that you want to suggest to your MP that he also becomes somewhat involved with this group in addition to your proposed CRPS APPG or at least he forms a working relationship with that Group. They have template letters for people although I am sure your MP knows your situation very well. It might be useful for him to be involved with both because at a general level it is more likely to have considerably more strategic influence on shaping and directing the general treatment approaches and policy on rare diseases and conditions. That should naturally include CRPS given that it meets numerous definitions of 'rare'. It may be helpful to have as much alignment in approach as you can with the other APPG or at least a working dialogue and watching brief.

They are also looking for survey responses from patients with rare diseases reading their experiences of being a patient with a rare disease. I am sure that your experience would be a valuable addition. The closing date for completing the survey is 28 September.

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

The first public Meeting of The All Party Parliamentary Group for CRPS will be on Oct 29th, 5 years to the day I sent my first e-mail. It is vital we get as many sufferers as possible there so please share this with as many people as possible
Some APPG pages will be going up on facebook over the next 2 days