Sticky Blood-Hughes Syndrome Support

Appointment at St T's changed again!

My July 2011 annual appointment was changed to February 14th 2012 then the time was changed. Yesterday my February appointment was changed to August 2012, which would have meant the annual appointment became a two year gap. I have so many letters with so many changes that I am starting to lose the plot! So I phoned up and the reason for the change was the same as last time - the consultant going on annual leave, As I was the first to call I was offered one of a few cancellations (not sure why this couldn't have been offered in the first place??) for 7th February. So am waiting with baited breath to see if it is changed again.


4 Replies

just hope my appt is not changed, already brought train tickets coz they are expensive should I leave at last minute.


oh no i hope they dont change it again for u x i have my first app on the 13th jan. i paid last year to see prof hughes privately which was totally amazing and worth every penny then he put me on the nhs list.


Melissa, as a word of advice from somebody who has just gone the same route as you and now had that first visit at St T - make sure they have sent your notes over from London Bridge to St T by giving them a phone call and telling them your appt date and the name of the doc you are seeing.

On my first appt there was no notes and because of that he was so grumpy it was a complete waste of not only me. my husbands and all of the doctors time. They just sent me off for blood tests and I too have to go back on the 13th Jan (perhaps we may bump into each other!). If you are coming a long way it would be such a shame to have the same experience.

As for changing appointments as Caroline says. TBH I think those letters are just computer generated so once a Clinic gets cancelled by a Consultants absence they just move everyone on to the next block of appointments. It used to happen to me at the National Hospital of Neurology all the time. If you call them and just ask for an appointment then they usually find you one which was proved by what caroline did. They just don't want everyone doing it or that would create blockages on their phone systems!!


I have always found the people at the Louise Cootes unit very helpful. If you phone through and explain they will always do their best for you.


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