Sticky Blood-Hughes Syndrome Support
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Any more St Thoms' appointments changed??

Just received a letter changing my appointment from March to November. No explanation as to why which is rather annoying, As I travel up from the West Country, with some difficulty, I have already booked a hotel room (no refund available).

I'm not the first I gather. Anybody know why they are doing it - before I give them a ring.

7 Replies

Yes this does happen, and it is mirrored everywhere, you need to mention hotel booked and expense and formal complaint etc etc in the best tone possible with possibly a letter if no response, speak to consultant's secretary, and keep us posted! Mary F x


Hi there this used to happen to me at the Heath Hospital in Cardiff a the eye department they cancelled me 3 times due to not enough Doctors and not enough funding my eye was very sore my Doc got me an appointment at my local hospital and they told me I need an operation urgently very worrying times ahead me thinks x


It would appear that no consideration is given to those travelling from a distance.

Like you I travel from the West Country and have to gamble as to whether to book a train in advance, which is cheaper. So far I haven't had an apppointment put back that far but I have had my next appointment in March put back by a week. Fortunately I hadn't booked the train.

I think you should make them aware of your dilemma.

Hope you can get this resolved x



I'll drop them a line and enquire as to why. I don't expect that they do it without reason but it looks like some in the admin chain may not be thinking through the implications. I'll update when I have a result.


Hi Tim

Wrote a blog on the subject at the weekend. I didn't have any joy changing my date till before September - I understand that the consultant looked at my notes and said I could wait until then. Previous reasons I have been given is that clinics are cancelled when consultant goes on annual leave or other reasons and so first available is offered , and they have so many patients that this isn't for another six months.

I am at least fortunate that I don't have far to go so don't have to book travel or hotel, especially as the latest cancellation was only 10days.

One thing that might be helpful for anyone who has to book hotels - try Premier Inn as they will allow you to cancel at short notice.



As mentioned in other previous threads, you can try PALS who will help with travel arrangements etc. But the bottom line is that the NHS management only want the current Lupus Unit dealing with urgent medical cases - they are happy for people to have the one consultation then to take that information and be managed by their local authorities. Money, I'm afraid ...


I go to the lupus clinic at st thomas' in london annually and stay at the simon hotel above the lupus unit at nhs expense (at no cost to me). I do live about 220 miles from london though. Cant remember how initially this was organised, but have been going a long time.


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