I haven't seen the doctor you have named - just to let you know the mods will remove the Dr's name from here as we can't state doctors other than prof grahame etc who have something to do with HMSA.
Anyhow, I digress.
I saw someone from general Rheumatology too. What they are doing at the moment is passing people over to general rheumy because the hypermobility clinic is too over subscribed. When you are seen there, the consultant you see will then decide if your case needs to be passed over and then referred to Prof G's team.
I saw someone very good (albeit a bit abrupt in his manner) and he said he would discuss my case with Prof G. and I would possibly get a phone call, or an appointment with him (see my post above) but unfortunately I will not get any follow up contact from Prof G as he has no more to add
Although I uess my case is a little different as I was actually diagnosed by professor grahame over ten years ago. The problem being (for me anyway) that I wasn't aware of how much was going on back then, nor honest with myself let alone anyone else, which is why I wanted a follow up to discuss what is actually
going on, as well as advice about what to look out for in my children (almost 3, and 10 months).
I suppose in many ways it might be because the guy I saw was very good, as I said. He knew a lot, and works on the hypermobility pain clinic with Professor Grahame, but he still said he didn't know the answers to all my questions. He said I am extremely hypermobile and gave me a brilliant written medical report several weeks later which is one of the main things I wanted.
Hope that all makes sense. My uncle had a brain aneurysm too.
One thing I'm not sure I read on here was to be prepared for student Doctors to be present for your appointment. Not sure if this is just a general rheumy thing, or whether I am being a plank for not even thinking about it (it is a teaching hospital after all!) but there were 2 female student doctors present for my appointment and I was not asked if it was ok for them to stay, just assumed. Just thought I'd mention it in case I hadn't. In some ways it helped as it meant he was showing them my problems and stating how extremely hypermobile I am etc whereas normally he might not have said it aloud. I personally didn't mind at all and would have let them stay, anything to spread the word in the medical community about HEDS.