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.