Professor Grahame- who is he? Appointments?

Appointments generally. Getting the correct diagnosis, finding the right doctor or dealing with the issues arising from being diagnosed with a hypermobility related disorder.

Re: Prof Graham

Postby gila » Fri Jan 14, 2011 12:53 pm

"outpatient" basically just means you are currently not staying IN a hospital :wink: - so yep nigh all of us see him as "outpatients"
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Re: Prof Graham

Postby Baiba » Fri Jan 14, 2011 8:44 pm

mmm...i did not mean that :)
is it possible to pay for a visit and not go through referral system? Does he has private clinic or something like that?
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Re: Prof Graham

Postby gila » Sat Jan 15, 2011 11:30 am

:D yes you can see him privately- I think the private clinic is run at 'the Hospital of St John & St Elizabeth'-
you could use the search facility on here to find others that have seen him privately and maybe pm then for some info
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Re: Prof Graham

Postby barkingmad » Sat Jan 15, 2011 8:07 pm

Hi Baiba,

Gila is correct. You can see Prof G at St.Johns and Elizabeths in London privately. It costs approx £350 for teh first visit which is very long! The about half that for a follow up visit.

You can ring University College Hospital (London) switchboard (google it) and ask them to put you through to his secretary who can make an appt. You will still need to get a referral from your GP to send in before you attend.

Hope that helps.
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Re: Prof Graham

Postby Baiba » Sun Jan 16, 2011 12:19 pm

thank you! i found it!
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Re: how can I get referred to Prof Grahame?

Postby alias » Wed Jan 19, 2011 2:43 pm

Hello,

Would anyone happen to know how long private appointments take from booking to attending and how much they are if paying independantly and not with insurance?

Many thanks :)
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Re: how can I get referred to Prof Grahame?

Postby nemonie » Sat Jan 22, 2011 2:31 am

I checked in at reception (10 minutes) and was waiting for about 15minutes, then was in with Prof Grahame for about 90 minutes. My Dad sorted payment out by card while I went to the loo after the appointment, so that can't have taken very long. It cost £300 for the appointment, that was in September last year. I'd ring up to check the price though.
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Re: how can I get referred to Prof Grahame?

Postby steph » Sat Jan 22, 2011 9:41 pm

Hi,
My appointment with Prof G cost £300 too, but he did spend an hour with me. It was a day after I booked but it was only because of a cancellation... The last time I tried to book in early December, the next appointment was Jan 18th 2011, so I foolishly didn't take it and saw someone else instead (£250 for almost nothing!!). My referring surgeon then said I HAD to see Prof G, then I booked on 22nd Dec and got my appointment on the 23rd. I didn't have to wait that long to see him on the day - he was running on time thank goodness!!
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Re: Prof Graham

Postby vamp_vintage » Tue Jan 25, 2011 7:17 pm

I have heard a lot about Prf. Graham. Can you tell me who he is and what he does? I'm guessing he is a specialist in HMS but why is he important?
Thanks
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Re: Prof Graham

Postby barkingmad » Tue Jan 25, 2011 7:55 pm

Professor Rodney Grahame is a globally recognised expert in HMS/EDS-H. He is also the Chief Medical Advisor to the HMSA.

He is important for a number of reasons but mostly because of the work and research he has been involved in regarding HMS/EDS-H throughout his career. Prof Grahame is regularly asked to teach or attend conferences etc.

He is based at University College London Hospital. He sees patients on the NHS and privately. He will see patients of all ages privately. He used to see the children at GOSH's Hypermobility Clinic but they decided not to renew his contract. So at the moment he can only see adolescents and adults on the NHS.
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Re: Prof Graham

Postby vamp_vintage » Tue Jan 25, 2011 8:03 pm

Okay, thanks. That clears things up. So in your opinion then, would he be worth seeing in the early stages of HMS or once you've tried other methods? Sorry ifi sound a bit clueless but i though i should ask now.
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Re: Prof Grahame

Postby barkingmad » Wed Jan 26, 2011 8:23 am

Personally I would try him after you have tried your local service providers, he is handy to have as a back up and can put you in touch with a rehb programme at UCLH or Stanmore if he feels you need it. There is a bit of a wait. :D
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Re: Professor Grahame- Appointments?

Postby mayaswell » Fri Feb 25, 2011 6:10 pm

Although I already have confirmed diagnosis of HMS I'm wondering what follows an appointment with Professor Grahame.Is it physiotherapy tailored to your individual needs or lifestyle tips etc.? My GP has agreed to refer me but even travelling to a local address is painful and rarely possible -needing loads of rest and chiropractic treatment afterwards.I am trying to weigh up the pros and cons of staying as well as I can or risking a trip to UCL.Am still worse from having to travel to appointment last week,Travelling is the big problem for me,since injuring sacro iliac joint 28 yrs ago.Any suggestions?
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Re: Professor Grahame- who is he? Appointments?

Postby barkingmad » Fri Feb 25, 2011 9:44 pm

Hi mayaswell.

You have my fullest sympathy for yoru SI joints! I ahve problems travelling as well.

As for seeing Prof G, what usually happens is that he will write a report of his findings and then make recommendations for your local service providers to consider (unfortunately, at the moment there is no guarantee that they will follow his recommendations or anyone elses from outside your local service providers).

He may suggest you need physio and refer the physio to the book written by Rosemary keer and Prof G on the 'ecognition and Management of Hypermobility Syndrome for Physios'. He usually refers to thebook directly. He may suggest you see an OT and/or a podiatrist or be referred to a pain management course or pain clinic. Depending on your condition he may suggest seeing an orthotist but things have to be quite serious for that. He will then say whether he needs to review you.

From there on it is up to your local service providers to get their acts together to meet your needs. If they dont meet your needs by the next appt he may suggest a rehab stay there or possibly a referral to another rehab service again that depends on what he finds on examination and during clinical discussion.

I hope it helps. Reports can take up to 8 weeks at the moment due to oversubscription of the HMS clinic.

Abi and I are visiting with UCH and its staff in a few weeks to have a chat about the needs of a HMS patient, not because there is a problem there BUT because they really do want to provide the best possible services and are kind enough to listen. :D
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Re: Professor Grahame- who is he? Appointments?

Postby mayaswell » Sat Feb 26, 2011 12:37 am

Thanks Barkingmad,your reply cleared up a lot of questions going round my mind about the whole process.I will try to arrange something this year as I've developed a whole new set of problems from moving into a property just under a year ago with flooring that jolts every joint going.I was desperately looking for a solution -that or it's return to previous home.It's great that there are positive solutions out there -great work thanks
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