Sticky Blood-Hughes Syndrome Support
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St Thomas hospital appointments

Anyone else had their appointments put off for seven months? I usually go every July but this years was cancelled and I was given another one for February! When I called them was told this was the first one available. Now I've had another letter changing the time from 10.00 to 9.20 - not a great gap but it is going to be dependent on the trains running to time and travelling during rush hour. Trying to decide whether to call them or just leave it. Just hope it will (a)not be snowing and (b) it is one of those mornings when I can actually get out of bed!!!

5 Replies

Hi Caroline.. if you feel its imperative that you see your consultant I would suggest you write to his/her secretary and tell them that you really could do with seeing them long before February. Quite often they can send you an appointment. When I first visited Tommies, I saw a registrar who's ideas were totally different from my consultants and she gave me a longer wait between appointments that I did not agree with. I wrote to my consultant telling him that I felt it was too long apart between appointments and he sent me one for a month later.. so it can work..

I also have to travel to London and I always had to make sure my appt was for 11am or after.. if they sent me an earlier one then I just rang them and changed it.. and explained why..

Good luck, give it a try :)




Oh God! This does not bode well for my referral! Mind you I think new referrals sometimes have better chances than existing patients because of meeting the waiting times criteria.

I dont think this is new. My appointment with the National Hospital of Neurology was put off from May to October and the time changed on a number of occasions. Excuse....the consultant had to cancel the clinic! I think they make those up as they go along.

Bottom line its because they have too many patients to deal with. My worry is that they are going to start to go the same way that Guys went/ have gone if you get referred there. You just see the consultant once and get discharged back to your GP. There is no on going care anymore as its seen as a write to a doctor with what needs to happen scenario and then they take over care again. We all know that the reality is that that does not work in our situations and neither do the GP's want us to be monitored by them either.

Seems to me there are some mixed messages and tugs of war going on in the funding so that as usual patients are playing pass the parcel with little care for our well being.


Right on cue I got my letter this morning about my referral. Phoned up Tommies and got an appointment on the 9th December. So pretty pleased with that as the wait is not as bad as I thought it would be.

Will let you know if its a one off or if they give me another follow up appointment.



I am fairly regular at both Tommies and Guy's (despite living over an hour outside London) and they are always pretty good with me. I do have a kidney transplant so I am always seen in the kidney clinic at Guy's and i get seen even if i call in the morning and turn up without an appointment. The Lupus clinic is different though, they are so busy and i always allow 3 hours to be seen at their clinic although in the last 18months the waiting time has been greatly imporved - i hope this is a permanent improvement! However whenever things don't feel right then I call and so far evey clinic ((including dermatology - incredibly difficult in my experience) will accommodate you.

I always travel in the rush hour (but i am a commuter too) to get an early appointment so it doesn't take a huge amount of my day. I hope you get it sorted, just plug away and you'll get there. Honest.

Take care and good luck



Hi there I've had my last couple of appointments changed several times, it's really annoying especially when you're feeling really rough and have been waiting for the appointment to off load all your ills! Mine next one's in a week and I shall just cry and wail if it get's changed, please keep everything crossed for me cos I really really need this appointment,

love sharon xx


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