Professor Grahame- who is he? Appointments?

[Omega]

mod edit - quote of previous post removed as not needed

Hi Star Gazer xxx

Many thanks for your kindest reply. What I have outlined so far was re. my private booking.

I think you have summarized what my issue was.

I was simply given NHS forms and no correct *private* form hasn't been sent yet (evidently, his administrative issue).
Am I right to think there's another doctor called Dr Hakim on NHS or private? It seems these clinicians are so busy, patients experience may well be reflective of how busy these clinicians are..?

I'm not so sure about this classification system whilst this may go off topic. Am I correct to think that clinicians will be re-evaluating these classifications at some point? In our family, there are different types. I'm not sure if someone has one type, the person has more genetic susceptibility to create an offspring with more mild or severe form in different type(s) e.g. overlap? This was something I wanted to discuss with Prof Graham when we meet. Hope there will be more research in this area. You have thankfully reassure me about the consultation and it was really sweet of you!

Hugs xxx

[star gazer]

Hi omega, I am you glad you feel more settled about you appointment. With regards to your questions about classification, I am not sure what is happening with that as I know the various types of eds were re classified a while ago and if it is eds then there a a number of different types, this is off topic so i will be brief but basicly within a family you can have varying levels of severity (I do with mine) Prof grahame will be able to answer all of these questions and also talk about genetic inheritance as he did at my appointment especially as my niece and cousins are affected too.
regarding Dr. Hakim i don't know very much about him as I have not seen him he does publish a lot of research with prof Grahame, but I am not sure where his clinic is or if he has a private practice too, but someone else maybe able to help with that question.
best wishes
star gazer x

[Omega]

Hi Star Gazer xx

Yes, sorry for going off topic re. types. I will PM you if that's OK?

Thank you so much for your great support. I feel more positive about visiting Prof G right now.

Thank you, all, you've been so great xxxx

[star gazer]

Hi omega please feel free to pm me. but you might also find some info on different types of hms in the search function in the top right hand corner of the page, if you can't find the answers you are looking for I will try and help via pm. The main hmsa page also has a list of publications that might be of interest to you aswell, you can access this by clicking the hmsa logo at the top of the page, when the new page opens I think if you look down the list (about two down) there is a link to the main hmsa site.
best wishes
star gazer xx

[Omega]

Hi Star Gazer

Thank you for your suggestion.
It was so lovely of you.

xx

[Omega]

Hi all

I'd like to let you know that I had a very good discussion with Prof G at last. He was a very compassionate and dedicated doctor. Certainly, he has lived up to his international reputation and positive comments which are often said about him and his work. It was definitely worth seeing him. I cannot imagine how Hypermobility community would do if he were to retire in few years time..I was so lucky to meet him before that ever happens. He was definitely, the foremost Expert, probably next to none in my opinion!! Thanks Professor, you're the Best!!!!

[bree]

Really glad your appointment went well Omega. I found him very compassionate too.

Breex

[star gazer]

Omega I am so glad you had a positive experience.
love
star gazer

[loosebones]

I'm not well enough to post properly but...

had a follow up with him the other day, was in there for an hour and with lots of issues to resolve, I feel that he's on my case and going to do what he can to help

[Omega]

Hi bree, hello there, star gazer xx

Thank you for your excellent support. I was far better prepared thanks to all the great advice from you all.
I couldn't thank you enough xxx

[Omega]

hi loosebone

It's great to hear Prof Graham is doing all he can to help you.
Hope you feel better very soon. x x

[xxxxlollypopxxxx]

hey guys, i know that there is already a thread for UCLH visits, but the posts on there seem to be mainly reporting on appointments that have already happened, and i couldn't really find an sanswer to my question there, and thought it might get lost if i asked it there.

SO, what i was wondering was how long it took people to get appointments with Prof G?

i recently saw my GP again to ask about the progress of the refferal, irritatingly they have just been sitting on a letter for the MSK team reccomending my refferal to Prof G and not doing anything about it since november

when i saw her though she said she would fax it through straight away, so in theory the wait for an appointment should have already started. any ideas how long it will be?

thanks guys xx

[Purplesheep]

I saw Prof. G. in April last year, after my GP referred me in January. I got a letter very quickly (less than 2 weeks) after the referral, asking me to call the booking hotline to arrange the appointment. The wait was just under 3 months. I hope this helps!

[xxxxlollypopxxxx]

thankyou for replying, that's really helpful. i hope i get my letter as quickly as you did!!

[madmum]

once my referral got through i waited 2 weeks then a letter came,i phoned and got an appointment 7 weeks later.