Teenage son pain and exhaustion - please help

[madmum]

I have the issue of being in Wales and going to an English hospital. We have to wait much longer for everything as we are out of area. I have to wait 10 weeks for a mri scan and 10-12weeks for orthotic input for a wrist splint to be made. If we were in england we would wait 6 weeks. It is ridiculous that it is a postcode lottery. We had to go to this hospital as our local is useless and could not diagnose or treat us. My orthopaedic consultant retired and I was sent to see another one,he is a locum and is looking to move so put me for a scan it seems so he is not there when I go back. My old surgeon was prepared to operate again,he says it is not something he would want to repeat. I have asked to see a full time consultant but may have to end up going private(I can ill afford it) as it is not that easy to change even when I was not referred to that surgeon but mine left. At the moment I am lucky that my sons rheumy is being supportive and has agreed to him having a splint for his knee and has discussed pain relief.

[SuzanneHH]

No I must confess the Prof seemed a little... distracted. And I wasn't asking many questions. Just trying to take in what he was saying. So little is known right now, we are just waiting for his full report, I'm not sure how long that will take. I know the Oxford paediatric was very quick but I don't expect the same with UCL. The prof did write down a lot of information and gave me teasers of what is too come but nothing concrete. He muttered about there should be rehabilitation services in Oxford. But that was all I got. As well as hearing that he hadn't got HMS but Ehlers Dandrous(sp?) and a another muttered surprise that the other prof hadn't diagnosed it when he had seen him 5 years ago. Plus the he hasn't got CFS and that he isn't fitting any of the boxes snuggly for easy diagnosis. Our family are never easy Oh and that it will take at least a year of rehabilitation for him to get back to somewhere close to a normal life.

My head is spinning with everything and I just want to try to pin it down.

[madmum]

When I saw Prof G the letter took about 4 weeks. He does send a thorough letter and recommends to your gp what he thinks is needed. You then need to speak to the gp. I found he appeared distracted,I later saw the referral letter which said I had left wrist problems when it is my right! That may be why!! Mine had recommendations for physio and cbt. I have had neither. I work with my chiropractor and he suggests exercises. I generally cope with the pain and the frustration I discussed was at the constant disbelieving and insinuation of mental health by my local hospital. Hope your son gets the help he needs soon.