Ah Purplesheep, you and I are in the same boat there then. I was too questioned why I was there as I was diagnosed with HEDS years ago. It's a shame that we all seem to have had such different treatment.
I was promised at the very least a phone call from Prof G as a follow up as I didn't see him at UCHL but in the end did not even receive that.
I do think you are correct about how 'bad' the HMS is, or how bad it is 'deemed' to be. Unfortunately as I have hidden the pain and injuries the whole of my life, it is often not apparent at all to anyone who doesn't know me inside and out, so I would imagine that I seem 'ok' despite walking with a stick etc.
There are certain joints etc that are getting worse, subluxing daily etc, problems that I want to discuss, but when it comes down to it, my GP doesn't know the answers and has no idea who to refer me on to if that makes sense, so I feel disappointed and "let down" by the NHS to not have a follow up, or at least a care plan to take away with me.
I think the thing I've found hardest throughout all of this is feeling 'dumped' after dianosis - until recently on here/in a leaflet or such, even *after* my appointment in January, I was still not aware that the main point of care for my HEDS is my GP. No one has ever actually told me that, despite asking that question.
And in terms of the whole "nothing can be done" statement, I still would argue otherwise. For instance, preventing my current condition from deteriorating any further would be actually a good thing that "can" be done, improving it would be even better obviously.
I can feel myself going off on a whole ranty post here so I'll stop. I guess my main point was, this disorder sucks enough without getting sporadic care and being 'left' to work through it.
) I win the lottery, I'll go and build a big EDS centre for us all
Good luck to everyone with appointments soon, excuse the fact I seem quite angry - I am, but at the world in general at the mo, a stage of acceptance apparently. Hope it passes soon!