I have a shockingly bad GP. When I tried to get a referral about my hypermobility (as a result of a friend and my osteopath thinking it may be HMS or EDS) she said that this never caused pain, fatigue or balance issues ... so, I probvably was hypermobile, but she couldn't refer me to a specialist. She wouldn't even refer me to a local rheumatologist. She often implies that it's all in my head.
Anyway, I managed to get her to privatly refer me (her letter to Prof Grhame practically said 'this ones is a hypercondriac, you tell her, she might listen'). Funnily enough, Prof G says I have HEDS! Funny that. He also wrote that it explains why my balance issues are so ongoing (I have another balance disorder, maybe two, but no one could work out why it wouldn't respond to treatment) and my pain, fatigue, IBS etc etc etc.
In the appt Prof G said I should have physio at UCH and see him ongoing. I was happy with this, I am concerned that a local physio will not have the experience of HEDS needed to treat me well, especialy in combination with other conditions.
Unfortunatly, however, Prof G didn't write this in the letter! He has suggested I am referred to him at UCH (on the NHS) and that I have physio with the local physio who he had a letter from in my GP referal. I am not sure why he changed his tune. It could have been that he hadn't read the letter previously to the appt so didn't realist I'd had a physio or that he thought it would be better as it's closer, or maybe, just maybe, he thought local would be best?! I hated that physio, though, she lied about me. She was horrible and not understanding at all. More importantly, I was discharged, and I can't see her again easily. I would prefer a UCH referal, especially as I'm moving house and it's doable from my new place, too. I feel I might have more support with other stuff (lioke orthotics etc) there, too.
Does anyone have any ideas how to get a UCH referal out of my GP? Would it be worthwhile? Should I ask the prof for a reason why he changed his tune? I just am really concerned about going to my GP and being fobbed off. AGAIN!