Sticky Blood-Hughes Syndrome Support
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Preparation for appointment at St Thomas's

Hi all

I have just received my appointment with Prof Hunt's team and wondered if i could have some tips on how best to prepare in terms of information they require that i need to provide, background family and personal information and, generally, what happens on the day? How long should i allow for the appointment?

Thank you in advance!

9 Replies

Hi Lissy

I have not seen Prof Hunt so not sure what the routine is there but I can tell you what I experienced when I see Prof Khamashta.

normally when you arrive they do things like urine samples, blood pressure checks etc. Once all that's done you wait to see Prof. this can be a very varied wait. I have been almost straight in to waiting an hour.

for a first appointment I would take a list of your history - bullet points

List of your conditions, when diagnosed and by whom.

List of Doctors treating you and their contact numbers.

List drugs you are on and doses.

Type all this up and give it to them. prof K loves mine and says he wishes all patients provided them. They scan through it and pick out what they want which saves you from having to worry about anything on the day which you are bound to forget with the stress of going for the first time. That then leaves you to just jot down any questions you may want to ask.

One of these days I'm going to write a blank document that people can copy to give them an idea but the limitations of this site means you can't attach it. I can always email it to anyone who wants it I suppose - I will try and remember to do this soon you will all have to bug me to remember!!

Hope that helps and let us know how you get on :-)


Hi Lynne

Thank you, that is really helpful. I will do as you have suggested. Just noticed that my appointment is for 9am, not sure how i am going to factor in travel given that i struggle to wake up at the moment!


Hi lissylou

Good to hear your appointments through.

I took a list of symptoms, a daily diary of symptoms and pain (two weeks worth), a list of docs and diagnosis, any previous test results, list of drugs, a history, inc family history plus a letter explaining how Aps etc affects my life and any questions, cos my memory rubbish.

My Last appointment, my fella and I stayed in a hotel in Golders Green, not to expensive, made the travel in easier in the morning,

Hope it all goes ok hon!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Hi lissylou can I ask how long you have to wait to see prof hughes, when is your appointment? Many thanks x x


Hi Lissylou,

I see Prof Hunt at St Thomas's and the advice given by the people above would be exactly what I would say to prepare for the appointment at St Ts. Prof Hunt and her team are excellent from the reception staff, nurses all the way up to Prof Hunt herself. The whole experience can take some time (urine sample, blood pressure, temperature, sats, weight and height then into the actual consultation, then blood samples taken as requested by the doctor then maybe organise a follow up appointment at the reception desk) but there are drink making facilities in a mini kitchen there that you can use. I would advise taking a book or magazine as there can be some sitting around especially when it's a busy clinic. I suppose it can take up to an hour and a half sometimes but as long as you are prepared for that and not in a hurry it isn't a problem. The facilities at the hospital are also very good, there is a variety of coffee bars, retail outlets (including M&S and WHSmith) and restaurants (the omelettes at the main restaurant are excellent!!!) all on the ground floor- the thrombophilia department is on the first floor. I hope it all goes well fro you x x


Thsnk you all. That's a help. It's the sort of thing i expected but good to know. Sometimes it feels like i'm being a hypochondriac so try not to talk about it. My thyroid/diabetes/blood count results all seem clear although hv no idea what my current INR level is. Headaches are a real problem for me at the moment and had an op two weeks ago so signef off and can sleep when i need to.

Heather, i saw my local Haem Consultant at the end of June and my surgery had their copy of my referral letter a week later. My appt is for 30 August so will monitor my symptoms over the next.few weeks to keep a diary.


I see Prof Khamashta as well and do the same as Lynne. It helps as my memory is so poor and also stops him getting too distracted. He always says this is good.


Well i arrived ten mins late as i got lost coming out of the tube station but at least i am here. feeling quite anxious about who i will see and how i will be treated. Everyone nice so far. My mum has helped with family medical history as far back as grandparents. Have my questions too. Hope all will be ok!!


I am out and on my way home. I saw Consultant Karen Breen who was very nice and has booked me in for an MRI scan and to return in Oct. The only thing that she did say is, if nothing shows up on MRI or in bloods, it could be stress..? :/


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