Thanks all - I'm going to digest first!!
Five - it's hard to explain, in one service I work in user involvment/participation part of that task is to look at the face to face interaction of frontline staff as they ARE the face of an organisation. I have buckets of research supporting that. I've also experienced it's failure in a totally seperate organisation.
What my organisation wants to do is to have a forum for kids - then leave it at that, 8 kids with vastly disrupted lives to represent 400. We have already tried that YEARS AGO and policy writers don't change stuff just cos kids ask, it doesn't work.