Dr ****** at GOSH.

[susie]

Hi Everyone,
My daughter was referred to GOSH to see Prof Graham by the Rheumatology department at Cardiff. The appointment arrived this morning and it is to see a different doctor instead. Has anyone else had this problem and been referred to a different doctor rather than Prof Graham? What was your experience? I am a little anxious as we have waited so long for this appointment and London is a long old haul from South Wales. I don't want to see someone who isn't an HMS/EDS expert.
Thankyou,
Susie

Mod edit - name removed as per board rules

[susie]

Huge apologies everyone. I shouldn't have mentioned a doctor by name who isn't an HSMA advisor. It won't happen again and I'm really sorry for any embarrassment caused.

All the best
Susie

[gila]

dont worry susie, most of us have done it at one time or another

and yep, it can be rather awkward at times not being able to name docs...particularly if you're wondering if you have been referred to the right clinic...

and yep, it has happened that a person's gp wanted to refer to prof g, but as they couldnt find him and his clinic on 'choose and book' (dont know whether he's on there now), they referred to 'general rheumatology at UCH"... which indeed isnt the same thing.

I'd suggest ringing GOSH and checking that that doc is part of the hypermobility team ... or ring the HMSA helpline they might be able to tell you or find out.
good luck!
xxg

[Stone]

Don't know about GOSH but at UCHL they have a 'clinic code' for each clinic which shows you if it's the right one or not. I wasn't under Prof G but one of the other team-members - but the clinic code is the same, HK11D. Maybe they use the same system?

(might be a bit much to ask of the NHS though!)

Stone

[barkingmad]

Hi Susie,

You have received a standard letter from GOSH. The doctor who you named is indeed the Dr who 'used' to run the clinic, however she is no longer available, but the clinic stays under the same name until a new person replaces it, this happens regularly especially when using locums. This doesnt mean that you will not see Prof G. as he works at GOSH regularly.

if you are concerned you can ring up the appts team and ask them to check whose list you are on for that appt date.

If I am out of date and Dr E has returned and you indeed see her, then do not worry, she has been trained under Prof G and is a fabulous lady who really does do her best to get what her patient needs. I have physically met her and was pleased to see her genuine interest in the field of HMS.

Anyway as I said I am sure that DrE has left (as I didnt see her around when I was there last and it was confirmed that she had left) and this is just the name of the clinic. But you can ask for the appts clerk to check that Prof G is in that day and you are on his list. Having said that it is logistically impossible for Prof G to see everyone who wants to see him, although he does his best. But the team at GOSH are fantastic and always refer back to him if the case is complex etc.

I hope that this helps
Donna

[morris]

I would definitely ring and check. I would ask appointments first, but also I would check directly with the rheumatology secretaries. In my experience the appointments team can't always tell who you will actually be seeing. There seems to be a weird system at GOSH; we are currently going to OT, physio, and until recently the psychologist, but all their appointment letters come out as with the same consultant, whom we have never met.

The last two times we were up, there was someone else waiting who wasn't on the clinician's list despite having been told they had an appointment! So as well as double-checking, I would take any letters/notes of phone calls as evidence when you go. On the plus side, both times these children were fitted in despite not having appointments - making our wait longer but I didn't mind in the circs.

Good luck - it is so worthwhile when you finally get there, everyone is wonderful!

PS I would echo Donna that so long as your Dr is on the hypermobility team you will receive good treatment, even if it isn't Prof G himself. In fact, the physios are so expert they could probably diagnose and treat if they were allowed to!

[susie]

Hi Every one,

i have to apologise yet again. I thought any replies went straight to my e mail so I didn't realise you'd given me all this fantastic advice until just now. I went onto the board as we went to GOSH last week and as you told us we had wonderful attention. We were lucky enough to be seen by Prof' G. He and his team were meticulous and utterly charming. It was such a relief. They recommended that Sorcha does the two week course so we'll be back up there soon.

Thank you all so much for your support and advice...... hugely appreciated,
Love
Susie XXX