Letter from Guys and St Thomas's : discontinuation of clinic at lupus unit

I have just received a letter today saying the clinic i have attended for the last 8 years at the Lupus unit at St Thomas's is discontinued and questioning my diagnosis, which i was diagnosed with Seronegative APS, Sjogrens/Lupus. by Prof Hughes. I have an appointment on the 24th September and i have had to book Train and accomodation, to attend. ? where does this leave me, as the services where i come form are poor. Has anyone else had this problem. I do not want to stop attending St Thomas's. Any advice welcome.

53 Replies

  • I'm afraid this is the case with most APS patients who attended the clinic. It is being amalgamated into the Rheumatology Services at Guy's Hospital at the end of this year, and they will only manage very unstable lupus patients.

    A lot of APS patients have chosen to move over to Haematology under Prof Beverley Hunt and Dr Karen Breen - also based at Guys. However, with the new CCGs your GP may not be able to refer outside your locality so please have a look at our APS specialists directory - we created this following the House of Commons decisions about CCGs last year:


  • Thank you so much Kate H. If This is the case, then i may be better seeing Prof Hughes or Prof Kamashta privately. I knew it would be down to budget. I am in a delema at the moment ,as my GP practice do not have any permenant GP's until October, therefore do not know my full history as they are all locums. I was getting excellent care at St Thomas's.

  • Is the Lupus unit closing completely?

  • It is almalgimating with Guys, and they are discharging some patients.

  • I still find that reply incredibly confusing. Guys and St Thomas have always been linked. Is the Lupus Unit at St Thomas closing?

  • It says in the letter, that the clinic has discontinued.

  • The lupus unit is going to be under the Rheumatology department at Guy's. Patients with uncontrolled lupus will be seen there but that's about it. Anyone with APS should try to be transferred under the card of Prof Hunt and Dr Breen.

  • I also have Sjogrens and a strong family history of SLE.

  • Now let me guess, is the letter from Dr Gibson? Hmmmm!!!!! My advice to you is write to PALS at St Thomas and tell them you have an unstable condition with NO local permanent GP so they have a duty of care to give you continuity of treatment. Ask to be reinstated as least until you can get local replacement treatment organised. With all the fuss at the moment about making the patient the centre of attention etc this is a perfect time to make a big fuss about funding affecting your treatment and putting you at risk.

    Funding may well be part of this but I think a certain Dr also has a political agenda! Time for a big fuss about this clinic closing........

  • Thank you yes it is that name. I am in the process of emailing Prof Hughes. I had a very strong feeling this would be political, at the coast of my health and many other suffers.I will contact PALS.

  • I have emailed Pals at St Thomas's Thank you for all the advice. Bernie x

  • Hi could you let me know the name of the Doctor, who is to start at Georges hospital please. I have contacted Prof Hughes re to see him again privately, if i do not get a result with St Thomas's. Thanks Bernie.x

  • I'll PM you the name.

  • Ok thank you.

  • I think you may find that if you are seronegative APS they may try to discharge you back to your GP. I am in the same position as you with Sjogrens too and it has only been through the support of Prof Hughes thaI am now getting good care.

  • Yes I am seronegative. I have contacted Prof Hughes and complained to Pal's at St Thomas's. We should not be having to have all this stress with the conditions we have. There is hidden agenda's going on here, due to the changing of funding with the NHS. Hopefully if we all complain this will alter the actions of certain bodies in the NHS.

  • Was it only last week that the news headlines said that Patients Saftey was to be made a top priority? I can't help thinking that discharging patients because they are seronegative despite the

    fact that it is accepted that it is the tests letting the patients down, is actually dabbling with their safety especially if they are symptomatic.

    The first thing a Doctor does when he qualifies is vow to keep the Hippocratic Oath of "Do no harm"! I'm wondering if they are remembering this when playing Politics!

    On a practical note here are the NICE guidelines for Adult Patient Experience when receiving care on the NHS. I suspect you can pick one or two points from this to throw at them!


  • Yes you are right. I worry that patients will die due to this bulldozer attitude, as we are at I risk given the nature of our conditions. Thanks for the link. The Nice Guidelines was my next area to look at.

  • I was so pleased to see the strong speech made at our last Hughes Syndrome Foundation Patient's day about Seronegative Hughes Syndrome, and the clear guidelines, about not turning patients away with poor or no diagnosis if they had the clear clinical symptoms, with past events showing a history of this disease. I have recently attended London Bridge where I had a conversation about the volume of patients being treated this way, and also how we need clear information on our charity website about this, patients are angry and disillusioned about being on the end of unethical institutional attitudes which are putting lives at risk! Mary F x

  • Well said Mary, all of this should be not be allowed to happen to patients, who are been put at risk. I could not go to that day, but would have loved to have been there. Its scandalous what they are doing. If you saw the letter I got from a said Dr Gibson, intimating that, if I have seronegative APS, that was diagnosed by Prof Hughes, as made me not happy at all. I know full well I have it, and responded well to and continue to respond to the medication. Its disgusting the way they have gone about this, putting lives at risk and taken the patients choice away. Loud we have to be.

  • I have an appointment to see Prof Khamastha at the Lupus Centre for October. I am to assume therefore it will get cancelled? Thanks kath

  • Contact Prof Khamastha's secretary to make sure. I have wrote to the Chief Executive at St Thomas's to complain and to be reinstated.

  • I also have one in December. Im waiting to be told mine's cancelled too :-( BUT if they do Im following in Bernie's footsteps because I live in London. My GP sends me to St T because they do not know how to treat me so for me St T IS my local specialist! If they discharge me, where am I supposed to go?!!! They cant discharge me back to my GP or local specialist because its them.....ridiculous!!

    As an aside im hearing nice things about the Royal Free now, they are defiantly beefing things up there. My headache specialist, one of the best in the world has moved there from the National.

  • So it looks like a certain Dr there has got his wicked way? One would hope that the decision was made with the best interests of the patient in mind and not with any professional egos :-(

    So is this where patient power should be stepping in or is it too late?

  • Its not too late. Just seen your message. I had already said the same thing.

  • All patients should take a profile on NHS choices and complain loudly. Mary F x

  • Could not agree more Mary.

  • It has got underhand then. I for one is not happy and many other patienst are having thier patients choice taken away. What has happened to following the NICE guidelines. All the hard work and dedication that the team have achieved over the last twenty years. All the patients should back the team and make this known to the public

  • Yes, I agree but the problem is the NICE guidelines are being met - lupus patients will be seen at Rheumatology and APS at Haematology.

  • But the patients are NOT being seen. They are being discharged! That is the point! I think we should do something and I am up for it!

  • According to the guidelines - 'stable' patients no longer need to be under the care of consultants and are being discharged. We could see this one coming, hence the APS specialists directory. The only thing you can do now is write to the CEO of GSTT but, knowing how you have to fight for space in this place, once they've spent the money moving them out, they're extremely unlikely to put them back.

  • I think the key word here is "stable". In whose opinion is any APS patient ever really stable!! The fact is in my humble opinion, before any patient is discharged, at least a question should be asked about their future care. The patient should be informed and they should be part of the decision making process.....isnt that in the NICE Guidelines?

    Clearly if patients are being given appointments and then sent away thinking they will be returning in however many months, that is not discussing and making them part of the process.

    Surely patients should not be discharged but transferred over to wherever the service is now moving to for them. Thats what we need to be fighting for if we cant keep the Unit intact.

    Recently I was referred to The Royal London to see if I had Behcets. They have three centres now for that condition, one at that hospital, one in the Midlands and I believe one in the north. When you are referred you see a number of consultants all situated in the unit as part of the diagnostic process. You can have your bloods taken from there too. It seems to me that this is what is needed for APS to make it a proper centre of excellence like they have. If a disease such as Behcets can have these centres why can't APS or (Hughes Syndrome) if the name offends anyone!!

    Perhaps this is what we need to start fighting for now. If we cant stop what has happened then we need to move on. The Behcets Syndrome Society is small much like HSF and they have a close relationship with the units.

    I really think if they can do it we can too and Im willing to help push this and Im sure others from here will do too. We cannot allow 20 years of work to just collapse in a week, thats just scandalous!

    Can we write a collective letter from HSF and patients to the CEO to show the strength of feeling about the way this has been bamboozled through? Im sure we can start a petition on here?

  • Well, this is why we built relationships with APS consultants around the UK - they could potentially have APS units in their workplace which is was imperative to start this initiative AND to keep building on it. More likely that APS will be part of Haematology Departments - depending on how long the culture of 'centre of excellence' lasts - it's been going a few years so we will keep monitoring it.

    Currently, we are working with the Unit where the 'unstable' APS patients are being sent - Guy's Haematology and are hoping to start a quarterly medical meeting with help from the staff there. People from this online community have also had a meeting in Bath as that seems to be a centre of excellence, and I have a feeling Wales will soon have one too.

    BTW - 'unstable' is decided by their consultant, probably against a set of rules ...

    While the HSF can't get involved politically with the closure of the Unit (please remember whose space we're housed in!), please do write a collective letter - patients have more clout when they join together and don't forget to address it to the CEO.

  • I am willing to put my name to a petition. They have a duty of care and that has been breached, by discharging patients without any disscussion to the person and not considered what their choice is and if it's what the patient wants. Only to say that you may be better cared for near your area.Which in my letter stated. Thats my choice taken away, and left without care now. Who do I turn to, if I have crisis?? as not many medics where I come from. Many do not have a clue how to treat you or understand how you feel. I have had first hand expierence in this with many medics.

  • Bernie - where are you based?

  • I am in Bridlington East Yorkshire

  • Ahh, yes, we're rather thin on the ground for APS specialists in the Yorkshire area, but we do have a Dr Michael Martin who is based in Leeds. You could ask your GP for a referral as he is in your area.

  • Dr Martin is due to retire,as my brother is a patient of his, and i do not want to explain myself again. I choose to go to St Thomas's as the care around here is very poor. I am not happy at all about the way matters have gone for me, as they have breached a duty to care and taken away my choice. Leaving me with no specialist care. How do they define STABLE? my conditions are never stable. Its disgusting what they are doing to patients. The media and MP's should made aware of this.

  • This is the letter which was sent last year to Lupus UK last year:

    Many thanks for meeting with us earlier this year. I am writing to let you know that the process of reassessing the services we provide in the Louise Coote Lupus Unit is now under way.

    We are a national tertiary referral unit and over the years our workload has increased to the point where we are having difficulty providing medical care to patients with active disease. We have a large number of patients with stable disease who attend for annual review. Having audited our workload, we believe that most of this care could be delivered by General Practitioners and local Consultants.

    We have decided that patients with very active lupus and major organ involvement would remain under our care. Other patients with stable conditions are likely to be referred to a local hospital and others whose lupus has remained inactive for many years, would be discharged to the care of their GP.

    Staff in the Louise Coote Lupus Unit would be very willing to review patients if in the judgement of their clinician their lupus had become sufficiently active for more specialist treatment to be required again. Indeed we will have more capacity to promptly review patients with active or flaring disease once these arrangements are in place. We will be writing to patients to inform them of these changes to their care where appropriate.

    These changes reflect what is happening in hospitals around the UK as part of the changes to the NHS including the new commissioning arrangements. I am very grateful to LUPUS UK for keeping your members informed about these changes and giving them the support they need during this period of change which some patients may find unsettling.

    Please note there is no mention of people with APS!

  • The sad thing is many Doctors do not know how to continue giving the care without a specialist's opinion. Wether the condition is stable or not, the patients who have been discharged are left in limbo. Its a bad enough battle to get doctors to understand your conditions. I have to stand my ground many times, as they do not know much about APS.

  • PS. Can you let me know who is replacing Dr Martin once he retires please?

  • Hi my brother went yesterday, and he has already retired. He did not get to meet the new consultant. All he knows is, its a female. I will try and find out the name.

  • Thanks - I would really appreciate any info - you'll be helping other Hughes patients :) x

  • Hi Kate i am not use to the new site and not been on here in a while but how do i access the APS specialist directory? cheers kath

  • Hi Kathy - it's on the charity's website under Self Help then Specialists in Your Area. The link is: hughes-syndrome.org/self-he...

  • That is true . They are not been seen.

  • They are on the charity's website: hughes-syndrome.org and not on this patients online community site. However, APSnotFab has posted a link on here too. The directory has been available since March this year when the Hughes Syndrome Foundation launched the new charity website - it was reported on here, in our newsletters and Facebook so I was hoping it had manged to reach everyone - clearly not! I will also put a reminder in the next e-news update I do too - hopefully, that will get the message across :)

  • Agreed! Mary F x

  • Thanks Kate. Am pleased to see Dr Creamer and Dr Patel and Dr Whiteways agreed to be added. Just to mention in May 2014 sadly Frenchay Hospital is closing and the services will be moved to Southmead Hospital - all the telephone exchanges are changing also but hopefully they will update you of these changes. Hope you are well Kath xx

  • Thanks for letting me know Kath. Wow! I can't believe they're closing Frenchay down - I had many a visit there as a child... I always thought it was better than Southmead, but the powers that be must have decided it was the best one to keep going for the Bristol area.

    Fortunately, the South West does seem to have a good share of APS specialists who were all happy to be included in the directory - places that struggle are Yorkshire and Devon and Cornwall.


  • Man, suddenly I feel concerned for my future as I have APS, Lupus SLE (although that's stable due to the high potency of the immuno-supressants I'm taking for my transplant!!)

    How can anyone get away with making such major changes without publicising it first??? I'm genuinely a bit shocked!

  • You need to write to the Chief Executive, as they are playing with peoples lives.

  • I am so worried reading this. I have been diagnosed with APS on blood results, medical history and family history at my local hospital but was referred to the unit because my results and symptoms also strongly suggest SLE. I had my 1st appointment at the start of the year and got back today. The dr has taken no real case history and on the basis of bloods ("which although are positive, not significantly so"), he has discharged me back to the care of my GP and told me to stop taking my warfarin! This sounded extremely dangerous to me and I queried it, but he said I could have aspirin instead (I had a stroke at 31 and many TIAs since) and take NSAIDs for my joint pains, arthritis on my hands and severe TMJ pain (for which I am on antidepressants for). He also suggested a calcium blocker (my notes clearly state that I have a calcium deficiency and am on calcium supplements and a host of prescribed and strong supplements).

    It did not matter in the least to him that I am very unwell. I have Raynaulds, ?sjogrens, chilblains and sores on my toes and have been suffering some form of renal disfunction for the last month (cyctoscopy and CT scan this week). Nothing I said would make him listen to me.

    I am really upset and angry that he has told me to do so many dangerous things. He wouldn't even acknowledge the extreme fatigue I have suffered with for three years and kept calling it tiredness. I can barely lift my head most days when I have to get the children ready for school, a day at the shops or at work puts me into my bed for the rest of the week, and hanging washed socks makes my arms absolutely kill, let alone brushing my hair :-(

    What do I do now? I cannot risk being taken off warfarin, which has helped balance, migraine and slurred speech symptoms. I am terrified. Please let me know what I should do here.

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