Many thanks for everyones replies. We have been back to see our gp and it seems this sorry mess with our old consultant just continues. Gosh were expecting her to refer our daughter to the orthapedic surgeon and another inpatient stay only to find out that she didnt do that either so I am glad we have finally got rid of her.
That said, our new gp is a wonderful young man who is knowledgable albeit a bit out of his depth at the moment but has said that we have to have a Paediatrian as dd is 14 and has conciderable physical problems which he cant manage alone so with the information we took him he is going to do some searching. He thinks perhaps Addenbrooks might be usefull as they are relatively close and have a Paediactric Rhumatology department there but has taken all the info about Gosh and UCLH in case he feels they cannot handle the care.
He is going to call us for another appointment as soon as he knows whats what but at least thats a start and far better than what we had before which was basically nothing.
Strangely enough we have the dreaded Gestapo coming this morning ( DLA medical doctor ) but I was really surprised when he called last week and told me that he was actually a doctor who works in the A&E department in kings Lynn ( Norfolk ), apparently this a part time job he has taken on. He asked me what my daughters diagnosis was and had an intake of breath when I told him and went on to chat for a futher 20 mins about this condition. Wow, could of blown me down with a feather, especially when he said that it down to us ( meaning the doctors )to 'Educate' the Dla people as to how disabilitating and painful this condition can be. Sounds promising but I am not going to hold my breath anytime soon