I just got my report through from my appointment with Prof. Grahame two months ago, and it's just as disappoining as the appointment itself was.
A lot of things have been left out, important things like my history of fainting and extreme intolerance to heat. Other stuff is inaccurate and some completely made up, such as TMJ problems and poor skin healing. I actually think he just copied and pasted common symptoms of H-EDS into the letter, on the off-chance that I might have them
He constantly refers to HMS, only one mention that it might be the same as H-EDS, which won't be very helpful in educating doctors. He's also decided that my mother is also hypermobile; how he came to that conclusion, I'll never know, since neither of my parents are bendy at all and I clearly said that in the appointment.
I'm quite annoyed as he left out the fact that my current orthotics are useless and while he said he would make sure I get a referral some custom-made ones, there is no mention of any of this at all in the letter. That was the only vaguely productive thing that actually came out of the appointment. Oh well, I guess I'll have to keep on spraining my ankles. Worst of all, he's created a lot of work for me by asking my GP to refer me for physio! I am already seeing a physio and this was discussed for at least 10 minutes in the appointment, he even wrote down my physio's name so he could send him a copy of the report! Now I have to go see my GP just to explain that I don't need another referral, because Prof. Grahame didn't actually bother listening to me.
The letter concludes by saying that he would be happy to see me again if the need arises. No thanks, if I need some to make me feel like I'm wasting their time, not listen to me and getlots of things wrong in the subsequent report, I can get that from my local rheumie too