Hi, under a consultant at the centre. Positive bloods and pre-diagnosed APS and ?SLE. Bloods say definately APS and possible SLE, symptoms suggest both. And yet dr said bloods were inconclusive, advised me to come off warfarin and would not take case history or listen to symptoms. Have I been victim to streamlining (Dr left the clinic today and several have gone from there recently, plus apparently it is moving to Guys in a couple of months), or is he right that these conditions are not what is making me ill? I am concerned that in discharging me back to my GP I will be ordered off the warfarin (which has given some improvement and I suffer more when my INR falls). I am ill and my bloods confirm this. And I know there are people with sero-negative Hughes, but I am +ANA, +LA, out of range DVVT, APTT, ACL IgM AND have had a stroke at 31, several TIAs, miscarriages and prem babies, history of severe migrainbe, visual disturbances, ?nephritis, hypothyroidism etc etc. I am really concerned now that I will have more events if he is discharging me particularly if I am made to come off warfarin, and upset that it may be due to numbers or funding rather than my clinical need 
Is St Thomas' discharging patients a ... - Hughes Syndrome A...
Is St Thomas' discharging patients a lot at the moment?
It sounds very very bad that you are being discharged, you will see on the forum that there is a petition started and signed by worried patients, please privately message me the name of the doctor who has done this, you must write a very strong letter outlining your history and case in bullet points, and consider making a complaint via PALS. I agree that you are right to be worried. MaryF
This is absolutely infuriating and disgusting treatment. When will it stop? It is known that I am not a big fan of St Thomas's after my own treatment but I am furious that they are forcing us to go private because our own GPs aren't specialists in this area, despite many trying and wanting to help. A very sad day indeed. >
I have been discharged three times, but am due to go back again next month, if I can get the date right 
My husband went to St Thomas yesterday for the first time and the Dr didn't seem that intrested in what we where telling him had been waiting so long for this appointment and it took us 4 hours to get there very stressful after reading this it seems we where not the only ones
Thank you all. Today is my only day this week that I do not have a hospital appointment. I shall spend it writing to PALS. At the moment I am still under a thrombotologist at my local hospital. I hope my GP does not write to her to get me discharged. He was very angry that I was referred to St Thomas ' in the first place but has no understanding of eitherof these
mabble, so I was told. Do you know otherwise?
Bonnie39
I really am concerned to i went to my local hospital yesterday to be told he does not want to look after my lupus !! i was left very upset and now do not have anybody locally to look after the lupus , i am a complexed person i have lupus antiphos lipids, chronic obstructive airways , diabetic, migraines, and take over 26 different medications, i was so shocked i am not sure what will happen now i am seeing my GP friday I no he will be very cross, just hope he comes up with something. Looks like i will be left all alone otherwise its very worrying i have had 18 clots in my legs 4 in lungs and PEs . What is this country coming to . also just had acupunter stopped i now pay to have this privately as it does help.
Make sure you right to pals , Good luck .
This happened to me last year at St. Thomas'. It has left me absolutely bewildered as what I should do next. I was told that the evidence was there(in my notes) that I had had these incurable illnesses but they have now gone and that I have been left with the effects of the illnesses and that I should think about coming of Warfarin, not that they were telling me to come off it but that I should make the decision! I was originally diagnosed by Professor Hughes(Lupus Sjogrens Syndrome and Anti Phospholipid Syndrome) who put me on the medication that I am still on, why should I have to make such an important and life threatening choice when I was told to take the medication to prevent me having a stroke? They obviously do not want to take any responsibility for what may happen to me should I stop taking Warfarin. I was also discharged from the Lupus Unit and I am absolutely disgusted by the whole thing, the doctors and the hospital should be ashamed by this, I have signed the Petition I hope that you do as well as phoning the PALS department in St. Thomas', I have been in touch with them over several other matters and they are so helpful. Take the advice that others have given to you it is good sound advice. Keep well regards Carole J
This is such a bad way for patients at the unit to bw treated. I am writing a complaint. I hope the rest of the people treated this way do too.
Perhaps all patients on here, or under the petition should give feed back via NHS Choices, being careful to give credit where due, but also highlighting issues where this is going on. The Care Quality Commission would be alerted if they kept reading a common flavour on there, MaryF
Good idea Mary!
I gave one local hospital two glowing feedbacks and also one in London, as long as people are balanced in what they write then it can only be a good thing. If I received crap care, I would definitely write something which would stand out and be picked up! MaryF
I was diagnosed with APS and Sjogrens Syndrome in 2002 by Dr Hughes at the Lupus Unit and have been an outpatient there for the past 12 years. In the last few years, my appointments have been repeatedly cancelled with no explanation and, when my GP complained recently, I was seen in the Lupus Unit by Dr Terry Gibson who said a) there was no such thing as APS; b) I must stop Warfarin immediately. I paid to see Dr Hughes privately at the London Bridge Hospital and he confirmed (and in writing) that I do have both APS and Sjogrens Syndrome and MUST continue with Warfarin and ignore Dr Gibson's advice. My GP was horrified that I was told to stop Warfarin and has complained in writing to St Thomas' Hospital. I have also written a strong complaint to PALS (Patient Liaison Service) at St Thomas and they will investigate. Any one who has had poor or dangerous advice from the Lupus Unit must complain in writing to PALS. The more of us who put in writing the dreadful service the Lupus Unit is providing, the bigger the chance of having a thorough investigation of the unit. It is really unacceptable to have medical staff give such dangerous and ill-informed advice to patients.
Details of PALS are: website:
guysandstthomas.nhs.uk/pati...
email them at: pals@gstt.nhs.uk: phone:020 7188 8801 or 020 7188 8803
What you write sounds quite HORRIBLE.!! Hope many can read it and email PALS.
Good luck to all from Kerstin in Stockholm
I have had a similar experience, I was diagnosed with Lupus, sjorgrens and sero negative APS in 1992 at Lewisham hospital and moved to St Thos Lupus in 1998. I cancelled my appointment in September due to illness and was told that I would be sent another one. The next letter told me that I had DNA'd and appointment and had been discharged, when I phoned up to complain about this, the secretary got back to me to tell me that the consultant had said that I didn't need to be seen anyway and had been discharged. My GP re-referred me, I was seen a couple of weeks ago, waited hours and felt that I was dismissed I was almost being told that there was nothing wrong with me and that tests today would not diagnose me with Lupus. He was dissmissive I didn't really feel listened to. He said that he was discharging me back to the GP and then added well if the blood tests are ok - I felt as though he had made his mind up before seeing me. I will discuss it with my Doctor and go to the London Bridge Hospital as I feel that this condition needs specialist treatment. To be perfectly honest I wouldn't want to go back there again it wasn't a great experience.
The transcripts from last years' patient's day are available on here, lots on Seronegative Hughes Syndrome and indeed this year, it is supposed to be viewed in the same way! Your experience is very similar to many and people including GP's are not happy about it. There is a Sero Negative section on here over on the right hand side, a pinned post. Including names of those who work at St Thomas' MaryF xx
Confused!
Leg Discoloration
APS Clinic at St Thomas'
