This is a Petition to the Chief Executive at St Thomas's Hospital London, on behalf of all Hughes Syndrome (APS) Patients

One of our members has asked me to put her Petition on here because of her discharge and the growing number of other Patients also being discharged from the Louise Coote Lupus Unit at St Thomas Hospital London.

One of our members was a patient at the Louise Coote Lupus Unit at St Thomas Hospital, London since 2005 and was due to attend there on the 24th September 2013. She recently recieved a letter from the lead Clinician of the Rheumatology Department at St Thomas's, informing her that she had been discharged back into the care of her GP. Many patients have been and will be discharged this year by the lead Clinician who, in his opinion, are deemed STABLE.

The Lupus Unit and the team at St Thomas's have worked hard over twenty plus years, to provde excellent care for many patients from far and wide, and now it has been disbanded. This vital service has been taken away leaving her and many more patients without care, and all done with no discussion and with a weeks notice.

1. We question what is deemed STABLE with the life threatening conditions that we are being treated for - APS and the myriad of other associated autoimmune diseases? We ask why is patients safety being put at risk? Is a Duty of Care being breached?

2. Why has the patients choice been removed at St Thomas's when the present Government promote that all patients must be able to choose where they recieve their care? This clearly is not the case at St Thomas's Rheumatology Department.

Members have written to the Chief Executive of St Thomas but it is felt that more should be done to stop this indiscriminate action and to protect the health of patients whose lives are being put at risk by the unnecessary closure of a unit for solely financial reasons which took twenty years to build up and has been the model for many other hospitals both in the UK and abroad. Other autoimmune conditions are having Centres of Excellence opened up in Hospitals in London and across the UK, not have services cut. Why has Hughes Syndrome (APS) been targeted?

Please sign this petition by commenting below to help STOP Patients safety being put at risk by being discharged with no choice and discussion and before an alternative care plan has been put in pace.

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126 Replies

  • This is a very good idea, I have so many private messages via here and other networks asking me to do something aboutt it, thank you APsnotFab and whichever member you are! Mary F x

  • Is there a link to follow or is just saying we agree with the petition here sufficient?

  • Sorry if its not clear. The idea is for people to comment here and add their name either real or if they are shy their username. This will then be printed off and sent to the CEO at St Thomas or emailed with a link to here. I cant think of another way of doing it but if anyone can please share. Its no different to a poll but its done as a reply. Obviously the more names the bigger the support! :-)

  • Please do not close st Thomas unit it is soooo good to have z centre of excellence for Aps there is nowhere else like it!! Trresa hunter

  • Hi APsnotFab,

    I thank you on behalf of the English patients. My only comment is: Do not send your photo along with the petition!

    My daughter Karin loved your photo and so do I.


  • Hahaha

  • Ok I most definitely agree with petition, and oppose these new changes. Jade.

  • I an shocked at the way St Thomas' appears to be discharging patients with Hughes Syndrome, who have often struggled to receive local care, St Thomas' has been a very good umbrella in terms of making sure the i's are dotted and that quality of life is maintained in a catchment area wider than London. This appears to be being sacrificed. I am also concerned at the treatment of patients with Sero Negative Hughes Syndrome,many with fully blown symptoms being disregarded or told they do not have the disease any more, if in a period of negative testing, or if they have never managed to pass a test. We are receiving many many inquiries from frightened people regarding this, and there have already been a few tragic cases of people having strokes unnecessarily/ A real shame that St Thomas' appears to be going down such an unprofessional route. Mary F

  • Well said Mary. All Professor Hughes hard work slowly being eroded :(

  • I agree that patients need to be referred to a specialist for follow up. I had to ask for a good hematologist. My caring pulmunalogist stayed with me after discharge and made sure I had the proper care which my dx. Of APS was discovered. So I found out this was the reason for my P.E. I now go to a hematologist regularly. he follows me on the Warfin. Thanks for the petition.

  • I agree with the petition. In my GP's surgery, none of the doctors have any knowledge or experience of APS. They also run a policy of 'one symptom per appointment' so I'm never treated as an APS patient, just each individual symptom is looked at, and like everyone with this condition, I have many and varied symptoms all of which fluctuate. I see my haematologist once a year, but they just check my blood is ok on my Clexane injections. It was the haematologist that referred me to St Thomas' at my request when I mentioned that no one was looking after me as an APS patient. I saw Professor Khamashta, and he told me that in the event of a crisis or a major flare up, I should just call his secretary and I would be seen urgently. Now, without this safety net of support, I really fear for the future. I have no other medics managing my APS, and if I get really ill and lose my grip on it, my life will be in danger. Please, please, please to the powers that this heartless and potentially dangerous decision and keep the Lupus Unit at St Thomas' hospital. Larraine.

  • I agree with the petition. In my GP's surgery, none of the doctors have any knowledge or experience of APS. I was discharged back to my GP who has no knowledge. I have to teach them what my INR is and how many times a week I have to see them. I also am increasing and decreasing my dose as my INR to low and they still put me on the same dose. I have now a heamatology letter which clearly states the care I need as the doctor doesnt seem to listen to me.

  • I agree and support this petition

    Maria Beswick

  • I agree and support this petition as well


  • I also agree and support this petition.

    Judy Hartley

  • I,and for many, see the centre as a pot of gold at the end of a very long rainbow of struggling-i finally found this centre after being left at risk for so long and finally feel like i belong-if this only ray of hope is taken away i have no idea what ill do-good luck andwith this note i agree for my details to be used and classed as a signature for the petition. I saw two proffessors in birmingham who supposed to know their stuff and i was still told id be ok and questioned hughes syndromes-the result?? - 3 lost babies,strokes and left partiallt sighted at 30-SORT IT OUT !!! x

  • whole heartedly agree with the petition. Although i was prevented from attended from the other end - I live in scotland and have been refused to be allowed to attend my next St Ts appmnt. Local care has just not hit the spot . After just been told this morning i have mumps menigitis which was overlooked due to misunderstanding of our condition I am definatley not satisfied that our nhs is doing its best.

  • Oh yes, I agree with all these comments. Please keep the unit available for all of us as ' centres of excellence' in some parts of UK are few and far between. It has been a life support for me.

  • I agree and support this petition

    Elaine Hall

  • Personally Im having difficulty understanding the rational behind the decision to close the unit. Patients that have been discharged and written to challenge the decision have been told it is to make space for the growing number of new patients and yet the unit has gone so where are the growing number of new patients going to be treated let alone those that are being discharged without proper care into communities with no proper expertise and knowledge of the condition. GP's refer because they dont have the expertise to treat complicated conditions, so discharging patients back to them is not the answer. Ostrich Syndrome may well suit the managers and CEO in St Thomas because it will not be their budget that have to pick up the tragic consequences when something goes wrong, it will be the local community the patient has been sent back to. However it is ALL of us that pays the overall costs, not just in the £1.2BN legal costs for payouts but in the suffering that we all have to endure through lack of adequate treatment and research. It really is time to fight back before its too late.

  • I had a Stroke three years ago and if it wasn't for St Thomas' I would never had known I had Hughes Syndrome. Although I am on Warfarin I could still have another Stroke. I come to St Thomas' every six months which means I can ask experts who understand and reassure me when I need it. Please do not stop Patients from coming to St Thomas' . GP have good intentions but they are not Specialists when it comes to Hughes Syndrome.

  • When I challenged the decision to drop me off the outpatients list I was told that I was one of "many hundreds" who were coming off the outpatient list.

    I happened to see a consultant at another hospital recently, forgive me for not giving names, and it was suggested that I had slipped through the net and should still be seen given my circumstances but given the distance I am from London, another closer consultant was recommended and I am in the process of being referred there.

    I have no doubt this is all financially driven and not a clinical decision. If it was the latter, I would have expected at least some debate with the patients concerned. I am thoroughly disappointed with St Thom's, the support we should have expected has not been forthcoming. I am particularly concerned that we have been cast adrift without any thought or arrangements for alternative care. I sense a move away from Prof Hughes take on treatment of our disease. Count me in for any petition. I think we may need to go to the press and challenge government on the so- called patient choice ( via all our own MPs?)

  • I absolutely agree with the petition and feel VERY strongly about this. I was referred to St T's by my local hospital who believed that with my symptoms, history and previous positive tests for APS that I should be seen by their specialist centre. Unfortunately, St T couldn't get rid of me quick enough when they discovered that I am now seronegative. The work of Professor Hughes and his dedicated and supportive colleagues must continue and a more holistic approach towards patients generally has to be taken if we are to get any form of relief from these symptoms. It's not just about the blood tests and quite frankly, they know it! Nobody should be given the runaround.

  • Please see my post on 'Seronegative Hughes' book writing! Which will be a compilation of patient histories of those with obvious and clinical Hughes features including those who go in and out of positive testing as well as those who have had dire incidents and still do not test positive, there is so little support, that it is a book that is most necessary and has support! Mary F x

  • I am sitting here wondering how Timothy Coote, husband to Louise, along with all the patients who are now being turned away from their only life line must feel at the moment. Did Louise Coote die in vain?

    Louise Coote died on 24th November 1995 at the age of 31, having suffered from Systemic Lupus Erythematosus (Lupus) for 14 years. For many years, including her last weeks, she was treated at St Thomas' Hospital. Because of the diversity of the disease, it can mimic other diseases and is therefore often misdiagnosed and mistreated. As we all know it is estimated that 20% of recurrent miscarriages, DVT's, Strokes, TIAS and Embolisms have a direct link with lupus and an associated condition known as Hughes' (the antiphospholipid) Syndrome, to name but a few. However, if patients have Primary Hughes' Syndrome then the percentage risk almost doubles.

    THIS SYNDROME IS LIFE THREATINING TO ALL OF US WHO HAVE IT. Surely the cost of effective treatment in the first instance outweighs treatment costs when both serious and life threatening complications occur?

    It is with this in mind that I ask you The Board of Director’s to reconsider your decision and find a suitable way to accommodate the needs of patients who are unfortunate enough to have had a diagnosis of Antiphospholipid Syndrome, or are still waiting to receive their diagnosis. After all your web page states that, and I quote, “Putting our patients at the heart of healthcare” is one of your priorities. This is not a truthful statement at this time.

  • Hear hear!

  • Well said. I could not agree more.

  • It occurs to me that we could seek out some facts, for example numbers of patients discharged and number of new patients, via a Freedom of Information request. Such information may help uncover the truth of what is going on. Any other facts we might wish to seek, questions we might ask? I'll happily do the FOI ( via where everyone can see it and any reply that is forthcoming) I must add that I never thought we might have to 'take on' St Thom's like this.

  • I have a very good friend who is a medical journalist, I may ask her to help. And would be great if you could do this, thank you. Mary F x

  • Please do Tim!

  • Most Hughes sufferers are victims and behave that way but the only real way to sort out Hughes is for the sufferers and family members to take charge.

    Most doctors rely on tests but it is the symptoms which really matter. The online Isabel Health care differential diagnostic database diagnoses by symptoms not tests.

    Doctors should use this and more are doing so.

    All other computerised diagnostic programs use symptoms to diagnose illnesses.

    What I suggest is you need to set up your own clinic, only employ doctors who are willing to move with the times and demand funding from the NHS pot to run it.

    Every home needs to be made aware of the symptoms.

    Getting people diagnosed and on treatment is important and cost effective long term.

    Generally mainline medical services would prefer to pretend this syndrome does not exist. They only like to believe in a few hundred diseases when in reality there are thousands. The Isabel database has 9000 diseases entered I think.

    The bottom line is : If you want something doing properly then you have to do it yourself.

  • I agree something has to be done, but I for one don't feel like a victim, however just because I can push for decent care, does not mean that everyone can do that, sometimes through genuine illness or due to post code care people can get stuck: MaryF

  • Sporty thats a very idealistic view and only appropriate for a few people. The fast majority of which need the care and support of the NHS which we all pay for in our Taxes. Why should an Autoimmune disease such as Behcets Syndrome have three Centres of Excellence set up over the past year, one at the Royal London which St Thomas could do with emulating, but which APS looks like the poor relation? Personally I take exception to your comments. Im NOT a victim, far from it and I doubt very much that a great many others are either. We are doing the best that we can with very little help and support from poorly educated medical personnel and we need to fight like hell to keep the expertise that we have got. That has nothing to do with doing anything yourself!

    This petition was to ask for comments for SUPPORT, to stop patients from being discharged and the Unit from closing. If you are not doing so please let me know so that I can remove yours.

  • Good morning Sporty1. I have read your comments with interest and have found them to be somewhat idealistic to say the least, and not at all realistic. As you cannot possibly have met all the members of this site I don’t feel you can comment with confidence on the majority in this instance, and make sweeping statements. I can only interpret what you have said to assume that you are speaking from your own experiences, therefore, I would be interested to know if you are including yourself in this group of “victims” too.

    I wholeheartedly agree that computer programmes can help to identify many symptoms. However, I do not agree that they should be used solely for patient care. The Doctor /Patient relationship is very important in creating an effective care plan for any patient, especially for those who have a diagnosis of Hughes Syndrome. I don't believe that there could ever be a subsitute from a face to face evaluation. Especially when you take into consideration the fact that Hughes Syndrome can be so unpredicatable and life threatening at times.

    To set up our own clinic as you suggest and for the NHS to pay again is not practical or beneficial to the patients who need urgent primary care now. Logistically too your idea does not strike me as realistic, but far more idealistic. After all it is a well known fact that Idealism is "what could be" where realism is "what actually is". Another comparison is that idealists are positive thinkers where realists tend to be very rational. When it comes to a decision made by the realist they must think it through looking at all sides of the situation before making their decision. They make a safer, practical decision, where as an idealist will be more risky with theirs.

    Best wishes from here InSpain

  • I support this so much as last week I received a standard letter discharging me back to my GP who doesn't understand/know about my condition. They quote I am 'stable' but how do they know that and that it is safe to discharge me, we all know how quickly things can change. I will be taking this further and complaining as it is not right we can all be treated like this. 10 years ago when I was pregnant and complained my baby wasn't moving and things weren't right I was told my baby was fine, 2 days later she was dead. I was too distraught to take it any further, however this time I have told my best friend that should anything happen to me while trying to sort this mess out she is to make sure my husband sues the pants off them!!! We have been through too much trauma as a family due to blood clotting problems to give up our fight for proper care, my dad is dead, my mum has problem and myself and my identical twin have both lost babies and had difficult pregnancies and premature babies (very in her case) as a result of our condition. We have both been diagnosed as seronegative, however both our consultants (Dr K for me and a lovely lady at Guys for my sister) have said that one day they will find the right test and we will test positive....till then I still expect to be cared for.

  • Hi

    Just back from 2 weeks away, without reliable Internet, and doing some 'catch-up' reading. I was one of the patients discharged from Tommy's as I was deemed 'stable' and I had understood that this applied to hundreds of patients. But I am shocked to read now, in the petition above, that the unit is closing. Can someone please give me any details of that? Has this statement been corroborated; has it been announced in the press for example? If this is indeed the plan, it is a heinous plan!

  • It has expanded onto Lupus UK! I see a member has just done that. Mary F x

  • Mary F I,m top_hole, I was also dismissed from my Hughes specialist at Southmead hospital 5 years ago, I miss their help 6 monthly.

  • Yes - due to the instability of the condition, whether passing test or Seronegative we all need supervision of our conditions. Mary F x

  • Hi APSnotFAB

    I would just like to add some comments to yours above and apologise in advance for the rant....

    I had my first appt at the Louise Coote Lupus Unit in July of this year after writing to Prof Hughes and having no funds to see him privately, he wrote me a lovely personal letter and told me to get a referral to Prof D'Cruz at St T. Fortunately one of my other Consultants at St T agreed to do the referral for me, and after a 7 week wait I got my appt.

    Well firstly, I never got to see Prof D'Cruz as requested, but one of his 'team' I was told. This was a disappointment straight away as I had not heard of this man or seen his name anywhere in any listing about knowing how APS works. He sent me for a whole load of blood tests - which seems to be the norm - and asked to see me three months later for the response. In the first meeting I had given me my whole life medical history (I am 65 and been on warfarin for 40 years, but only diagnosed with APS in 2001) and my full list of meds and conditions previously diagnosed. Having looked through them he said there were probably a few of my meds that could be changed which would improve my situation and that some of the conditions I had been diagnosed with were generally associated with APS.

    I must say I was very disappointed to have to wait 3 months for the follow up but was told this was normal.

    So Monday this week I went back for my follow up appt - and what a disappointment that was. Firstly I saw the nurse who said my BP was 176/102 and that she was very concerned and would make a big note for the Dr. When I did get to see him I was not in with him for more than 10 mins! He told me he was pleased to say I did not have SLE but did have Primary APS and Lupus Coagulant. He also said that as I was on warfarin already that was the right treatment for me and to just stay on it - even though I took my yellow book to show him how erratic my INR levels were. Even with numerous raising of my warfarin dose the INR had not gone above 2.1 in over 5 weeks (the week before it was 3.9 and then suddenly dropped for no apparent reason). He said to stay with it and it would sort itself out! He never even mentioned the BP even though I was feeling extremely ill and he said to make an appt with my GP soon.

    He did not give me the results of any of the other tests, nor let me ask him any questions about them, even though Prof Hughes was adament I had Sjorgens. He said that to go back under my GP and he would see me again in ONE YEAR in case any new thinning agents had been approved. He did not change one of my meds as previously said either as he felt that should be left to my GP who would be looking after me - the big issue for me here is that my GP doesn't even know what APS stands for and neither does the nurse who does the INR.

    On Tuesday morning my INR had dropped again to 2 and I was feeling so ill that the INR nurse called the duty GP to see me. After talking to me for a few minutes and taking my BP she rang the DVT nurse at our local hospital and told her of the concerns - I have had 3 PE's and around 18 DVTs most of them whilst on warfarin except for the first PE - and was told to go straight to the hospital A&E. They were brilliant there and the nurse who dealt with me knew all about APS etc. She took bloods and arranged a scan. She gave me a dose of Heparin as she felt I really needed to get my INR level up. Fortunately I did not have a clot at the time but I have had a stroke in May and several TIA's as well as falling over and generally feeling really ill all the time.

    I am sorry to dump all this on you but can you please advise me where I should go from here - I have suffered all these years without any help from anybody apart from seeing a Heamatologist and Rheumatoligist in 2011 when diagnosed. What can I do to get looked after properly? Have you any advice? Many thanks, Monica

  • Hi Hon, so sorry you have had such a rough time. Please post this again under questions. You should get some advice and support then. It might not be seen here.

  • Thank you Jane, I have just done that so hopefully somebody somewhere might be able to offer some hope

  • It is your right to complain via PALS, please take a friend or relative with your who you trust should you be asked to attend again. There is also of course the feedback facility available on NHS Choices or Patient Opinion. I am sorry you had such a dreadful time. I hope your next appointment is much better. Mary F x

  • Thank you for your advice Mary, but I am still having an on-going battle with PALS from a previous bad experience at St T where I almost lost my life due to acute renal injury (kidney failure) caused by a 'knock on effect' through several different depts. This was Feb 2012 and I am still battling for answers on who will take responsibility for it. So I am afraid I have no faith in them resolving this issue. Will certainly look at the NHS Choices of Patient Opinion. Thank you

  • I support this petition 100% Life is tough with APS we need care and understanding from people who know the way this illness affects our lives. I often feel like giving up seems the power that be will give up on us first .

    Love & Hugs to all, take care.

  • Wholeheartedly support this petition, I'm in process of Dx and was hoping St Ts would have been a place I could go to get better.


  • I support the petition fully, as i am one of the patients who have been discharged. I have also written to the CEO, and awaiting the outcome of the investigation. We all should write to our MP's and a copy to the opposing health Minister. Also Jeremy Hunt the Governments Health Minister. It is disgusting what is happening to patients who suffer with life threatening conditions. Patients are clearly been put at risk, without a thought to what follow up care they will receive. Please all members sign this petition and spread the word about what is happening at St Thomas's. We have to make a stand with this. Bernadette/ Bernie E

  • I am shocked and saddened by the news that the unit is to close. I attended the unit and a number of occasions and I have been discharged to my Rheumy. My Lupus has progressed and my GP was about to re refer me back to St Thomas's and I wonder if that will now be possible. It is the best unit in the UK and will be a major loss to people that suffer with not just Lupus but other illnesses. It needs to be saved.

  • Maybe a petition could be set up on the Downing Street official government site. If you get over a certain number of votes the issue is discussed in parliament.

  • If it hadn't been for Graham Hughes discovering Hughes Syndrome, I would not be here to tell the tale. He was the doctor who originally diagnosed my Lupus at Hammersmith Hospital over 20yrs ago. This unit at St Thomas' is vital to Lupus patients and the idea of it closing makes me feel quite sick. I agree with everyone's comments and am happy to do whatever it takes to get this dreadful decision reversed.

  • I support this petition. When my bloods were still negative the thought that St Thomas' had such a clinic filled me with hope. This decision is letting existing and future patients down very badly.


    I was at my local hospital friday to be told after 13 years of receiving acupuncture its being cut and no longer being offered to me any more all the NHS are doing is making cuts and no care being shown to patients.

  • Yet another nhs cut back!! I support this petition 100%. Please keep the support and care going. A much needed service.

  • I also support this petition 100%.

    I was discharged back to my GP last December am still struggling to find good alternative care.

    Six years ago I ended up in intensive care with CAPS (Catastrophic APS) due to mis-diagnosis by a local hospital, it was only my husband's insistence that the A&E doctors check with the Lupus Centre at St Thomas's that saved my life.

    I am only here today due to the care and experience of all the staff at St Thomas's and the long involved calls they participated in during my recovery.

    Jan Baddeley

  • I agree wholeheartedly! I had the same situation- and I fought and wrote letters and contact Drs at St T's. I had been a patient there since the early 1990's; diagnosed with SLE,Sjogrens and APS! The staff were extremely supportive, and I have been assured that I will have 6 monthly appointments (thank God)! I letter I had received basically told me I was fine, I did not have SLE or APS, I just had had PE's and DVTs; the Senior 'specialist' who wrote the letter had never met me or examined me or consulted any of the Dr's I had seen at St T's. He told me I was on Warfarin and he suggested that there was no need for this either! Well on the way back from my appointment with a 'PROPER DOCTOR' who KNEW about SLE,APS and Sjogren's; I developed a DVT - I was on Warfarin and my INR was 3.5! So much for the so-called 'specialist' Clinical Lead my left one! My LHB ( who I spoke to) actively encouraged me to maintain my contact with Tommy's, as they had no comparible service!! They were willing to pay 'whatever'!

    We need to keep fighting, I have had to do it for years, and as I get older it does get harder. But if you do'nt you are at the whim of the 'Clinical Leads'!

    Going for a cup of tea and a lie down !

  • Morgan you say you wrote letters to get yourself reinstated, which is great, well done! However did you make a formal complaint about the Clinical Lead who discharged you for the reasons you state above? Especially for the reasons that he gave! It would seem to me that he is working directly AGAINST the Doctors and Consultant Specialists in the APS Unit and clearly does not have a clue about the condition. Who is giving this person carte blanche to ride rough shot over other peoples patients, making decisions about their futures without not only any discussions with the patient themselves but without discussions with their managing Consultant? This is clearly against NICE guidelines and if you had a DVT as a result of being discharged I would suggest they have a lot of explaining to do.

  • I ask that people who have been discharged please make a formal complaint to the Chief Executive. I am in the process of complaining, and today i received a letter from St Thomas's Complaints and Legal Services, saying the investigation is taking longer than anticipated due to staffing issues. I await the outcome. We all have to be heard, as this Lead Clinician has decided to discharged patients without so much as a thought of the risk all these patients have been placed at, without care.

  • Here is some news that may be of some interest. I found it on the Lupus UK website courtesy of Paul their Admin:


    I have received this comment to post from Yvonne Norton (Vice Chair & Trustee, LUPUS UK)

    Current Status of Louise Coote Lupus Unit, St Thomas’ Hospital, London

    Having such a large number of patients on the Louise Coote Lupus Unit’s books means that the time between follow-up appointments can be quite long and patients with lupus flares cannot be seen quickly. For this reason, patients who are considered to be stable are being referred back to their GP for ongoing care. Should problems arise and the GP needs support, the patient can be referred back to the Unit.

    Currently, some lupus patients needing infusion treatment are receiving this at Guys Hospital under the care of lupus nurses and the renal lupus clinic is being transferred to Guys under the care of lupus consultants. Guys and St Thomas’ Hospital plan for the Louise Coote Lupus Unit to eventually move to Guys Hospital, where there would be more space and improved facilities for lupus patients attending as out-patients. It is not expected that this would occur for, at least, another two years. There is now, however, doubt being expressed that this move will take place. It really is a matter of ‘wait and see’. One thing can be assured, the excellent Team of Lupologists, led by Prof D’Cruz, will continue to give the best care and treatment possible to patients. Each patient is considered individually before having their ongoing care passed to their GP. Although, technically, a patient may be discharged, they will still be known to the Lupus Team who will have access to their notes and will be able to see them at the Louise Coote Lupus Unit should this be necessary. There are no plans to close the Louise Coote Lupus Unit, although it may move to a different location.

    LUPUS UK works closely with Prof D’Cruz and his Team and has no worries about the continuing care of lupus patients either at St Thomas’ Hospital or Guys Hospital when this is necessary.

    Prof David D’Cruz comments:

    "The NHS is undergoing profound changes with the development of Clinical Commissioning Groups. The Louise Coote Lupus Unit has recently met the specifications to be commissioned by NHS England to provide highly specialised services for our patients. These changes will mean setting up clinical networks so that the Lupus Unit can work with local GPs and specialists to provide the highest quality of care with fewer appointments being needed. Far from closing the Lupus Unit, the Chief Executive and the Medical Director at Guys and St Thomas’ Hospitals have given their strong support to maintaining the reputation of the Lupus Unit as a national tertiary referral centre."

    Yvonne Norton

    Vice-Chair & Trustee, LUPUS UK

    Today I was talking to another Consultant, he was telling me that he thinks that the new funding with the CCG's means that Hospitals are not getting paid while patients remain on their books but will get paid when they receive a NEW referral. If this is true it may explain why there is this sudden rush to discharge patients, however note the fact that they point out they can be re-referred because then they will get paid for the same patient again! is it me or am I reading something into this thats not there? :-D

  • Thank you for posting such clear information from another charity, some information that is straightforward, although of course is does not change a difficult situation. Mary F x

  • And its still unclear if the above is just for "lupus" patients and how and if APS and Patients are included in the above.

  • The said Lead Clinicain comments in my letter, that APS, comes under the umberella of Haematology and not Rheumatology. I beg to differ, as the APS, plus my other auto immune conditions affect my joints. The Lead Clinician says it does not. I have arranged an appointment with Prof Hughes for next year, and await the outcome of my complaint. Its still not right the way they have left many patients without care. Many GP's are not APS aware, therefore St Thomas's Lead Clinician at the Rheumatolgy Department are putting patients lives at risk.

  • Something that I cant really understand is the need to move services to Guys. It has functioned extremely well at St Thomas for years.

    I suppose it could be seen as a prime bit of real estate for some other use. But surely that wouldnt be considered when we are dealing with large number of patients with potentially serious and life threatening conditions.

    I cant say I am surprised at all the behind the scenes dealings at all. Sadly.

    At my last appointment the receptionist said there were no plans to shut the unit and subsequent appointments would be at St Thomas. But then went on to say, that if it were to change the appointment would be rebooked at the new location.

  • For those unaware, or who missed it, the units closure was touched on in this radio broadcast. The relevant bit is around the hour mark

    Good translation skills may be required

  • Yes, Prof D'Cruz was very good and his emphasis on the discharge of "stable" patients rang some bells! Some of the people interviewed also had APS but didnt seem very knowledgable about the condition - couldnt even pronounce it properly. Shame, a missed opportunity, we could have done with a more knowledgable spokes person going on who had APS and Lupus who could have explained it better and raised more awareness.

  • I think discharging patients with complex conditions is potentially dangerous especially as you are only allowed to discuss 2 items maximum at a GPs appointment. Along with the fact that the GP really has no in depth knowledge of the condition.

    Either a specialist centre is required or its not. It seems that Professor Hughes believed it was necessary but that some opinions may now differ.

  • I fully support this petition. My sister died from complications of APS. Loretta was under the care of her GP and had had several different specialists examine her over a period of years, none of whom diagnosed APS. She had a very long history of symptoms that were ALL typical of APS, as her condition worsened, more drugs were prescribed. When she didn't respond to their treatments, it was strongly suggested that her symptoms were psychosomatic. Her autopsy following a PE showed APS and apart from the PE, there was a lot of damage caused by previous undiagnosed clots. This was 14 years ago, back in what I called the 'Dark Ages' for APS, it would seem that is where we are heading again!

  • Hi, a sad story,and brave of you to put your sisters story here. It really brings it home that we must always insist that doctors listen to the patients who know their own bodies.

  • I fully support this petition. I was only recently diagnosed with APS, after being misdiagnosed as having athsma, when I had a dvt and multi PEs. I was very lucky and strongly feel that health professionals need more education and centres of excellence to support people with these complicated conditions

  • Well, I will see what comes of my next step in my complaint to the CEO, as I was not happy with the reply at St Thomas's, so I have contacted my local MP, health secretary, and the opposing health secretary. Please keep signing the petition.

  • I wholeheartedly support this petition. I was also discharged from St Thomas's, back to the care of my GP who openly admitted that she has no knowledge of even which blood tests to carry out to monitor my condition. I am very fortunate in so far as my disease(s) has remained relatively stable but I now find myself in a position where nobody will be carrying out a thorough annual check, which I think is vital. I will also be deprived of any specialist knowledge which in the past, has identified and treated various ailment associated with autoimmune disease that my GP was unable or unwilling to investigate. So to transfer people back to the care of doctors who have absolutely no knowledge of our condition, and without any advice to them, seems at best... reckless.

    However, what worries me even more is the bizarre 'de-diagnosis' I was given at my last appointment at which I saw a young registrar who had obviously been told what to say. The follow-up letter reads "I have reviewed her notes thoroughly today. I could find no evidence to support a diagnosis of mixed connective tissue disease or Sjogren's Syndrome. She has dry eyes which was confirmed by Schirmer test previously. Therefore I have reassured her that I will remove the previous diagnosis of connective tissue disease and Sjogren's from the letter".

    What the blazes does that mean? Have I miraculously recovered from conditions that we all know don't just 'go away' and is the implication that the professors who originally diagnosed me (two of them from different areas) didn't know what they were talking about? I am nonplussed! And I very much doubt that my insurance company is going to believe I suddenly recovered.

    I have already taken action on a personal level but I am happy to get involved in any group actions because I think this treatment is totally unacceptable, particularly as we know that stress and anxiety can worsen our illnesses and this affects many people, some of whom may be less able to deal with it.

  • Please continue to complain. That is what i said to the CEO ( Chief Executive) ?? Have we all been mis- diagnosed. I do not thinkk so. There is an under current going off at St Thomas's. Contact your MP. You have a legal right to have a Duty of Care, and you have a legal right to have the choice to be cared at St Thomas's

  • AnneS - The letter seems to disagree with the facts. You were not reassured by having the diagnosis removed and from what I think you are saying you did not want it removed so is this Doctor writing things that are not true? He also is contradicting himself. He says you have dry eyes which was confirmed with a Schirmer test but then says you dont have Sjogrens Syndrome??????

    Didnt this Doctor discuss this with you at the time and if so did you tell him you didn't agree with what he was doing? It sounds to me as if you were ambushed and perhaps that needs to be a warning to others to watch for.

    I spotted a certain Dr responsible for the discharges in the Clinic when I was there but I dont understand what a person who has responsibilities in Rheumatology in Guys and lectures on Gout is doing at St T's going through other Consultants patients notes, changing dx, taking people off of medication and then discharging them, do they have either their Consultants or the patients permission to do that? These are questions that need answering.

    I also told my GP what was happening and that I was concerned I would be discharged. She told me that if I was told at my appointment that I was going to be that I must fight the decision. My GP said they were not specialists, they know a little about the condition but they do not know enough to treat me adequately which is why they send me to the clinic.

    I suspect this will be the view of the majority of GP's who are not trained to be specialists but General Practitioners.........the clue is in the name! That is why they have specialist clinics.

    It would seem to me that this is more about funding. The Hospital gets more money for new patients than they do for those that are already attending the clinic. There is therefore a financial incentive to discharge.

  • APsnotFab - Many apologies for the delay in responding. It had not occurred to me that I was ambushed but thinking back on it, that's exactly what it felt like. I thought I was just turning up for a normal appointment but the minute I arrived in the clinic it was clear that something was very different. It was spookily quiet and there were no consultants in sight. The young female registrar was a complete stranger to me and she also had a medical student sitting in on my appointment (with my permission).

    The follow-up letter was written by the same registrar and said that it was she who reviewed my notes and she who was altering the diagnosis? As I said earlier, the original diagnosis was first made by a consultant rheumatology professor at my local hospital, then confirmed by one of the consultants at St Thomas's. So the only conclusion to be drawn from the letter is that someone, somewhere is refuting the diagnoses made by their own (and very eminent) experts in the field.

    I certainly did question her at the time but she was adamant there was not enough clinical evidence to prove a diagnosis of Sjogren's or Mixed Connective Tissue Disease, only APS. She then went on the say that if those conditions remained on my notes, there was a danger that any future symptoms could be erroneously attributed to them, thus causing doctors to miss new conditions. I did try to argue but it became apparent that whatever my questions, the answer was going to be the same... so I gave up and left.

    Since last posting I have managed to get an appointment with the consultant who made the original diagnosis so I will be taking the registrar's letter along and will hopefully get some sensible answers. I am really angry about this so he'd better batten down the hatches!

  • They are playing with peoples lives. APsnotFab you are right. The clue lies in the name General Practioner not a specialist. This is all about funding. If this certain Doctor continues to discharge patients many GP's will be having to care for patients and not have a consultants to discuss any worries with the patient. I wonder if they have discharged private patients at St Thomas's. It will be a safe bet, that they havent. This all makes me suspious that this has come from top down.

  • I wholeheartedly support this petition.

  • I support this petition. I am very confused as to why our life threatening illness is being treated this way.

  • Had a reply from the Department of Health passed on by Jeremy Hunt. Saying they cannot intervene with a complaint at St Thomas's, as they would be seen to be bias.. I was'nt asking them to sort my complaint out. I was asking why patients are been dischage and left without specialist care, and their right too choose where they receive the care. And i have received a letter today, from my local MP, saying he will look into the matter. We members must not give up.

  • I have decided that its best to take someone with me to my appointments now if its possible to arrange it. I have felt on a few occasions that there appears to be a disconnect between things discussed and final clinic notes.

    Maybe a second person or a recording device is the only real safe option.

    Did I really say that?

  • I think what is happening at St Thomas's is a travesty - Lupus is a chronic illness which is INCURABLE and although you may be stable now, it does not mean you stay that way. I was a 'stable' Lupus patient for over 15yrs but went into eventual renal failure. If it hadn't been for the constant care of both the rheumatology/renal doctors at Hammersmith Hospital I would not be alive today, having received PD dialysis and then a transplant. Whatever form of Lupus you have, you should be entitled to specialist care full stop and I whole-heartily support this petition.

  • I have been discharged from the Lupus Unit after being told now that the evidence was there that I had had these illnesses but they have now disappeared. These illnesses being Lupus,Sjogrens and Hughes. These are not curable none of them so why do Consultants(top ones) lie? do they think that their patients are without knowledge of these conditions? I am quite sure that we know a lot more than the doctors do. Do you also know that if you are on Warfarin the Warfarin distorts the test results, so I have been told by two Consultants, so why do all of these blood tests? I support this petition completely.

  • When I was first deemed to be moving into a chronic stage of this condition, I was rapidly dropped by my companies private health care plan. Well not dropped entirely but told I could not use my plan in connection with a chronic condition. They certainly felt it was unending.

    So its left me wondering ......... If I am de-diagnosed will my private healthcare be valid for all ports of call again. Hmmmn!

  • I have submitted a Freedom of Information request about the decisions to abandon so many of us. They have acknowledged receipt of the request but have failed to respond in the time set by law.

    Accordingly I have requested a review. You may follow the progress via

  • Tim,

    I do admire what you have done. Good!

    Kerstin in Stockholm

  • Let's hope it helps engage in a debate with them!

  • I sign this petition

  • I support this petition.

    I suggest that everyone who has been discharged who is unhappy with the decision should contact their MP - They have no direct power but when enough MPs ask questions things often change.

    Linked to that, anone who knows any media person, go and talk to them and tell them what is happening.

  • I support this petition.

    Please, I urge you, do not turn patients away from specialist care. It is only for the good care of the compassionate Doctors and Nurses that' stable' patients are doing well. We know how quickly our health deteriorates without proper care and this can only be managed in a specialist centre.

    APS and SLE are complex conditions requiring total management from specialists. If patients are turned away from St. Thomas' hospital then their lives will be in jeopardy. I am not stable - my goal is to become stable. That should be reassuring, however if I was considered well enough to be 'cared' for elsewhere I am certain that my condition would deteriorate and the cost to my family , to myself and to the NHS would be far greater.

    Please do not turn people away from the amazing care provided at St Thomas' hospital. The Doctors and Nurses took an oath to act in a patients best interests. They want to care for us. Please don't make the Doctors and Nurses at St Thomas' Hospital act in a way that is not in the best interests of their patients for the sake of supposed 'cost saving'.

  • I wholeheartedly support this petition.

    I need my care at Tommy's!

  • As someone who was recently diagnosed with Lupus and APS and know how difficult it is to understand the diagnosis and the potential impact on my life and be assured I am getting all the support and health guidance I need. There should be more, not less specialist care providers such as St Thomas' Hospital for people with a life-threatening illness, please don't take this away.

  • Try living with APS and Lupus and the many problems they cause see then if you would want St Thomas'

    to close!!!


  • I agree and sign this petition

  • thank you !! I,m signing ! x

  • I agree and sign this petition

  • Most G P's do not understand the problems caused by APS therefore I agree too and sign this petition.

  • I support this petition, I have just been re-referred (again) as have been very ill recently and found that my gp and local hospital have little or no knowledge of APS and my gp surgery has a policy of one ailment per appt like a previous poster

  • I support this petition, I have been discharged as has my friend. My friend is 70 years old and was told that she should expect aches and pains at her age! She has APS, lupus, and previous mini strokes, she feels abandoned by St Thomas'.

  • Thats appalling!

  • Yes it is APsnotfab, she is very upset, her gp is unsupportive, she basically feels that ageism is involved here as she is certainly not stable.

  • Can you help her to fight this decision as others on here have done? Write to the PALS department of the Hospital, say what you have above. Say that they have broken NICE guidelines by not consulting with her about the decision that was made and making sure there was onward local care. Ask if her Consultant at St T was consulted and agreed with the decision. Finally if you can help her go to her MP so that he /she is aware of what is going on and state that in the letter to PALS too. This is a political and financial move made by men in suits who have no idea about this disease and who have not signed up to a hypercratic oath so don't worry about their duty of care. We might as well all be bus drivers to them we are just numbers.

  • I sure will. She was discharged by her consultant at her last appointment, he was very abrupt, no discussion. She was discharged back to gp and has to ask for a referral to a hospital nearer to home. the consultant said to her we can't treat the whole country! Fortunately I can support her and have researched other hospitals and consultants so she can go to her rural gp armed with info. I will ask her to write to her MP and PALS. I find it shocking that an NHS department can do this to vulnerable, worried patients - stable or not. In the interim if anything happens to my dear friend the men in suits better watch out!!

  • Yes and please look at our list of specialists to see if there is someone in her area that she can ask to be referred to. Tell her to quote Jeremy Hunts latest little thing when he says that GP's have to do more with referring Cancer patients quickly. Well do they want the cost of a Patient who has had a Stroke too! False accounting and short sightedness!

  • This is appaling. I am in the same position. I have had two investigations at St Thomas's and they are still standing with the decision. I have taken the matter to the Ombudsman, and asked for an advocacy. My local MP is also involved. I wrote to Jermery Hunt, but his get out clause, was he cannot interfere with the NHS. Hello, am I correct, that he is the current Health Secretary. Its wrong that they are getting away with this unsafe behaviour.

  • Wow..Very helpful thread.

    It crossed my mind if this department is under a considerable strain? I have been discharged by one NHS department of late (nothing to do with St Thomas') in London. I was told that their focus is on new patients wanting a diagnosis and the department can no longer deal with patients who are already diagnosed. At least, they were honest.

  • This is such a load of ____! The reason they do it is because they get more money for new patients than they do for patients that just sit on their books and keep coming back for repeat appointments.

    So what do they think those newly dx and then discharged patients are going to do? Over worked GP's who have 5 minutes to dish out a prescriptions to people with coughs and colds don't have time to manage complex medical conditions.....who are they trying to kid......

    Sorry, this is not aimed at you but these ridiculous men in suits. One day it will be their families who need a specialist unit and then they will have a different opinion. Rant over!!!

    And thank you for the gratitude about the thread....its being sent to various people in high places so keep signing. :-D

  • I fully support this petition and feel continuity of care is of great importance in providing adequate, effective healthcare in any setting, especially so in terms of syndromes and disorders which are often missed and insufficiently treated as in Hughes Syndrome and autoimmune disorders. We have a lot to learn by ongoing patients and how their health pans out, which I believe is part of the process in seeing exactly how things like APS work and respond to treatments. I wonder if this could be a ''. '' petition?... Someone may know? x

  • I emphatically agree with the petition. I have an appointment in a couple of weeks time so it will be interesting to see if I am ambushed and told I am being removed from the list. I was diagnosed with lupus quite young and was sent to my local hospital and rheumatologist for years and they were awful. I saw dr. hughes while he was at the unit and they held my hand during my only pregnancy and afterwards. The treatment difference and specialist knowledge of the staff was huge. My gp has little knowledge of lupus and all they say to me when I go and see them about any issues is "have you seen/spoke to your consultant at st thomas'" if I were referred back to my hospital it would be a complete waste of time.

  • I wholeheartedly agree with this petition.This government are shutting excellent local hospitals saying centres of excellence are preferable. St Thomas' Unit is supposed to be the best place to be seen when you have APS or another autoimmune condition eg SLE. People travel across the country to be seen at this unit, such is its reputation.

    People like me have struggled to get to the bottom of serious health issues and fought for a referral there only to be discharged back to their GP without even getting the benefit of safe advice and a forward care plan.

    It is beyond tragic that lives WILL be lostor seriously harmed because of inappropriate discharges and dangerous advice.

    Please reinstate inappropriately dischargesld patients and leave the Unit which was built up for people with APS by Professor Hughes alone. Our lives depend on it.

  • . I fully support the petition and cannot believe that patient discharge is happening . It is important that APS patients have a support system , drs who thoroughly understand the condition.

  • hope I am not too late to say that I too support this petition,I tried before but my arm went into spasm trying to scroll down to the bottom,but have managed (with the help of codeine) to get to the botton today

    It hasn,t actually closed yet as I was there a couple of months ago(discharged again)

    However, I must say that I felt very confused at my appt by difference in attidude,although having read these comments it makes more sense now

    Previously, the prof,who was Dr. when I first saw him was always very warm, patient ,understanding, and when he did discharge me he did put on the bottom of the letter that he was happy to see me agian in the future if need be

    Whilst he was away becoming prof. I saw someone else who was rude, disagreeable and refuted my diagnosis

    I was unhappy and asked to go back again by which time he was back and now a professor and re-instated my diagnosis

    At my last appt though he discharged me stating that as all bloods have been normal for a while (none were actually taken at my last 4 appts) I do not need to be seen again

    I asked about treatment and stated that I had syptoms (brain fog, fatigue) 9all sorts of strange stuff going on with my arms) and he said brain fog was cos of my "hypersomnolence and I should give up my nap and my arm is thoracis outlet syndrome

  • Please do not do this. I'm what can be used as an example of the potential of things to go wrong....I was discharged from hospital several years ago to the care of my GP....I constantly asked to be referred to a specialist this was always declined. Even my INR tests were processed at the practice.

    Circa 5 years on i have a brain haemorrhage that I'm rushed to A&E for on New Year's Day 2013 I further developed CAPS which I understand I'm rare to now consultant could not believe how id been medically treated over the years. I probably cost the NHS considerably more this way.....budget saving! Nope.

    Mr D Lloyd

  • I whole heartedly agree - why should it be down to 'duty of' care.... Why can't the government just Care!! Lesley Dale Berkshire

  • I have been at the Lupus unit since 1998 and before that under the Rheumatology dept at Lewisham Hospital since 1992. I was too unwell to go to my appointment in September and I was told I would be sent another one. I did not receive an appointment but a letter telling me that I Had not attended an appointment in December and had been discharged my GP. Referred me straight back. I attended yesterday and had a check up where I felt very dismissed and as if I was a nuisance and nothing much wrong with me. I was discharged back to my GP. I am not happy with this decision, I am confused about why it was considered necessary for me to be seen in the clinic for all these years and now it isn't! I don't feel any different. I feel now that I will have to go for a private health option at The London Bridge Hospital as I believe that this disorder needs the attention of a specialist. As someone who worked for the NHS for 20 years I feel ashamed of the service. I am appalled at my treatment and the treatment of others that I have read about on this forum! This cannot be permitted to continue.

  • I agree with what you say. This is happening up and down the country, but people used to be able to rely on those clinics at St Thomas' for their unstable conditions. I have for years given praise where due, and been quick to write and thank, and at times give constructive feedback if something was wrong. Many people could have an NHS choices profile and leave good feedback and also constructive if not right, this will then alert the Care Quality Commission. The public are beginning to make a noise and hopefully with the right feedback things can be improved. I go to London Bridge like many others, and can barely afford to do so, but I always have in mind that for many it is completely impossible do to this. At some point a letter will be written which will support these comments. I have to say all my comments for the last three years have all been positive both in London and locally,but should that situation change I would leave in great detail what had gone on, and hope it would better the care for visitors attending a service behind myself.


  • Interesting, you say..sudden change in attitude.. I often wondered after certain treatments are offered e.g. plaquenil, immunosuppressant etc etc and you are still unwell despite these treatments which may call into question that "you may have got something else" (?) or "you should be stable by now" "why these treatments didn't help" etc - I'm only wondering as to what they are thinking. When money gets tight, they probably come up with far more rigorous "criteria" to keep patients hanging around longer than they should be? Just wondering.

  • I have not actually tried either of those treatments omega, although I have asked for plaquenil and been told that there is no clinical evedence to prove that it helps

    Am on aspirin only for my APS

    omeprazole for stomache problems

  • St Thomas's are using Plaquenil for this condition alongside other medications also London Bridge, my own daughter has radically improved on long term Plaquenil. Regarding your stomach, are you gluten free? MaryF

  • Actually, meant to ask this yesterday and forgot

    What do you guys (the ones of you that are gluten free) do when you go on holiday?

    I have just booked to go to Morocco in October

  • Ok: I use these cards for every country I travel to. You need one in Arabic and one in French....(French being the third language there). Have several copies of each: Also I always have nuts and raisins in my bag and also corn or rice cakes... just watch that any potatoes or chips are not flour coated. Here you are:

    Most restaurants will cook you rice etc or potatoes. Have a lovely time, I am jealous already. MaryF

  • oops, think I have deleted my reply to Mary ???

    am just about to go gluten free Mary, busy using up all my sauces and stock cubes etc but have not bought anything containing gluten for three weeks

    am loving the genius bread and have tried the pizza hut gluten free base

    I am very puzzled as to why Dr. D,Cruz said that to me (no evidence that plaq helps) as I know they use it widely at the unit:/

  • Well many rheumatologists have varying views! Regarding gluten free.. quinoa is good...most of the pizza chains do gluten free now. Also Genius do pastry including puff now in the freezer. Don't get caught out with soy sauce nearly all have gluten apart from one or two, which you can find in health food shops if not in the supermarket. Also be careful of cheap chocolate powder on cappuccinos. I spent a long week-end in hospital looking after my son... with everything shut, I still managed to be gluten free but became ill.. turned out it was the barley in the choc powder on top of the hot coffees. I have been gluten free almost two years now, also Lynn is... so we have plenty of recipes and short cuts between us. Good luck. MaryF

  • thank you for the link,will get some of those

  • Gina talked about GRAIN BRAIN by David Perlmutter. I had to take it in English (sorry about that) because there was no translation. I have had it from my Library and shall try to read at least a bit of it. Wellknown in Sweden.

    Best wishes from Kerstin in Stockholm

  • I most certainly wish to add my name to this petition.

    Patricia Hursey, SE18 5JZ.

  • This is such an important link to the ongoing research of often a poorly understood condition! If like myself you have a network in your local area any decisions are made based on being reviewed by the experts! GP & other doctors rely on this!

    I like many others are guinea pigs in this newly recognised disease that we can't change but at least have some control on who we could see ! You can not abandon us like this ! We need this centre & the number of sufferers to attend & be seen stable or not how else are you going to co ordinate advise & carry out proper research?

    Please don't take away this life line! I thought health care was about prevention? So what are you saying we need to become unstable have strokes heart attacks Tia's PE's & suffer with fatigues muscle pains when there are medicines to help that realistically we don't always have access too unless we have the St Thomas's link & expertise to advise other professionals!

    That's false economy & very short sighted on your part!

  • I support this petition also. I am only just getting to see someone at St Thomas's after 25 years suffering with APS. None of the doctors I have seen to date have any idea about APS or the other various conditions which come with it and this expertise is essential.

  • Please stop discharging patients who are at risk.Some of us previously treated for years with Hughes syndrome and then suddenly told at a later date by other members of staff we no longer have the illness discharged all of a sudden and medication denied !

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