Professor Grahame- who is he? Appointments?

[Llaurin]

Bendyneck that is awful, you just know your referral paperwork is sitting on someone's desk and they just don't seem to care that their delays are actually having real implications to people.

My doctor said he would send off a letter five weeks ago for a private referral, and I just rang St Johns hospital to see if they had the referral - they said the letter would have gone directly to Prof Grahame and he hadn't passed anything on to them yet, but I could make my own appointment over the phone, which I did. 17th July!

[bendyneck]

Thanks Llaurin for the sympathy. I have actually been feeling a lot better of late as I have been taking much better care of my back. Still no word from the PCT though, I think I might give the Doc another ring, as my lovely Osteopath says;


"It's the squeaky wheel that gets oiled".

[cracker]

hiya how do i get ferrferd to Prof Grahame? do i ask my gp?

[Llaurin]

OK so my appointment with Prof G is tomorrow!

I am a bit nervous, especially about the journey - went into London to see a show on Saturday and I'm only just feeling awake again, I think my body and brain both switched off for a couple of days.

A couple of questions for those who've been: I've read that the Professor sends a written report (I'm going private) but I have an awful memory; will I need to make notes on whatever he says/suggests or is the written report comprehensive? And I've got a file with my medical notes but I figure there's not much point in taking it as from what I've read on here, pretty much the whole appointment is him asking questions and he covers most things. My mum is coming; will she be able to come in with me or is there somewhere for her to get coffee or something? We'll be at St Johns.

I'll be wearing stretchy track bottoms and a t-shirt but I've sorted out matching undies just in case!

[bendyneck]

Llaurin, good luck today hope it goes well. I would suggest you take notes while you are in there. Sometimes I wish I had recorded appointments with doctors in the past. I don't know how easy that would be for you, whether you have an i-phone? Love the idea of making sure you have matching underwear on! I have made an appointment privately now too as my local PCT declined to fund me being referred out of our area. My appointment isn't until September though, he's so booked up. Let us know how it goes?

[Llaurin]

Well I remembered to take a book, good thing I did as he was running late - only half an hour though. He's a lovely man! Asked me what I wanted from the appointment, I said I just wanted a definite answer as to whether I have HMS or not as I have been told I have/haven't/have. He asked me loads of questions, following a pre-printed sheet. I had gone through my medical notes and made a list of dates of things, very glad I did as that was the main part of his questions, what has happened and when. Then he did a lot of measurements, got me to bend, stretch etc.

He said I have very stretchy skin (I didn't think I had!), confirmed my reaction to local anaesthetics was 'typical', basically nodded at a lot of the answers I gave, and was very pleased I am losing weight, he said that will help. I ended up with a referral to Physio at St Johns. He has definitely confirmed I have HMS, and obviously I haven't got the report yet but on the physio referral form it said Beighton score 7 and Brighton +ve.

[Llaurin]

I have had my letter from Professor Grahame today, and I'm in a bit of shock to be honest. He has painted a picture of someone who is really suffering badly from pain, who can't walk far, who can't do general household stuff. I don't see myself like that at all, yes I am in pain, yes I have trouble doing things, but I can't change it so I just get on with it.

It's a real shock to see how an "outsider" views me. It really is. I'm thrilled that Prof G has confirmed everything - his letter states quite clearly that I have EDS and that is worth its weight in gold to me. But I'm also a bit shaky realising that it's all really real, if that makes any sense.

[Rosie]

Hi all

Llaurin, I can fully understand how you feel. My own diagnosis came as a relief to me, I felt validated that someone in the know agreed with me and hadn't dismissed what I was going through. But when I was awarded higher rate DLA for both care and mobility I was devastated. I was in floods of tears saying 'I'm not that bad am I?' The problem is that as symptoms develop we adapt and work out ways of coping, and tend not to realise quite how much we are affected, we take what we do as normal. It is only when we take a step back, or when someone else takes a look, that we have to take a good look at our lives.
Having the letter may well be very helpful if you want to apply for treatment or benefits, or something like Access to Work.

Rosie

[minicooper_93]

hey guys, ive just made an appointment for next weds to ask to get a refferal to prof g. everyone says hes the man of wonders so im thinking as im gettign worse i should ask for his advice etc
how did everyone ask for their referal though? my gp is good in that if i want somethng done shell ask me what do i think we should do next etc...

any suggestiosn welcome?
please an thankyou

[Bethwoo]

Dont know now to put this without sounding awful, but thats ot how i mean it. Just dont know how to phrase it. I have an appointment with prof Grahame in October. Obviously it's in London, I live in the north east so bit of a hike. I don't, mind that, I know how lucky I am to get appt in the first place.
I have a couple of questions tho that no one seems to be able to answer. Firstly, what is it that the prof can do for me that other rhuemys can't? Is it a case of him knowing a lot more and beIng able to point my gp in the right direction?
What happens at the appt? Will I be doing bendy stuff? What happens after appt? Does the prof write to my gp with advice or suggestions? Will I have to go back for a follow up?
Really appreciate any info anyone can give.
Thanks.

[madmum]

I saw him. He went over medical history,did various measurements and tests on joints etc. Then said yes I have hms. He wrote to my gp suggesting hms,p.o.t.s. He said to send for physio and cbt. I have had none. I am not as bad as some,he has referred people to other services. I was discharged the same day.

[Rosie]

Hi all

Bethwoo - have a read through this thread and you will see that many people have the same questions and concerns as you
There is also another thread here about visiting UCL in general.

Rosie

[Bethwoo]

Sorry Rosie, I'm a total muppet today.

[Rosie]

No problem Beth, we all understand how overwhelming things can get

[cracker]

do u have to ask your GP or physio to get refrerred to prof grahme?