Hi. I was lucky and received an appointment with Prof Ferrell at Glasgow Royal Infirmary after asking my GP to refer me. I have had tens of years of pain and injuries. It was only a chance remark by someone who said I had "lax ligs" that made me follow it up on the web and I found the HMS site and found advise there. I had already had negative Rheumy antibody tests at another Rheumy clinic some years previously and this is required by the GRI clinic before they will see you. I had had no advise or support from any of the health professionals I had consulted along the way.
The appointment came after a few weeks, I did not wait long and I was seen by Prof Ferrell. I was there about 45 minutes. We talked over my past history (lots and I had made a typed list of what I could think of). I did not have to undress but we discussed my problems and he assessed me. He asked if he could take a video of me being unable to stand on one leg etc. Poor proprioception it is called and I can now actually manage say it! He wrote to my GP. I think that the Prof is possibly research orientated and does not run a clinic that 'treats' patients on a routine basis but it was very reassuring for me. I was told I did not have to go back but could ask to be seen again if I felt unsure about anything he had said. He suggested I see a physio at GRI, who is herself hypermobile, to discuss exersizes, and this was useful but she was leaving the hospital soon after and will be a loss. The diagnosis was good for me as it meant I could research HMS for myself and am now self managing my pain. It meant I could at least go along to my GP and ask for help with some sense of respect for my own health and not feel quite so bad about it.
I bought the new Hypermobility book and it has been money well spent as I can talk intelligently with any health person I see now. I found out that Dr Hakim sees only private patients but it is possible to see the London NHS HMS clinic. I decided against trying for this as I could not afford to travel down more than once and probably all that could have been achieved would be a diagnosis and I had that. I also find traveling hard. I now see an MFR (Myofascial Release) practitioner once a month in Milngavie and she understands my problems and helps with my muscle pain. She advises me about stretches to do and positions to avoid and is worth every penny, I just wish I could afford to go every week! It helps me but maybe not everyone.
If you PM me I can give you a number for Prof Ferrell's office so that you can ask his secretary if the referral has been made by your doctor. There is a very kind Rheumy doctor at Gartnavel who is understanding of Hypermobility, I wish I had met her years ago! Modnote, name removed - see forum rules.
Good luck, don't give up! posting.php?mode=reply&f=3&t=5083#