Sticky Blood-Hughes Syndrome Support

letter received today

Was discharged from lupus unit in Feb.was not happy, consultant disagreed with everything Prof.D,Cruz had said previously and I knew that I would ask to see him again after reading discharge letter.There was a delay in the letter going out and in the meantime have been really poorly and all advice the same from A&E, lupus nurse, on here and friends all said see gp, ask to go back to see the Prof,so last week I did, did not have to insist or even convince, just asked and gp agreed, however got discharge letter today and very upset with contents. was worried it may alter gp,s action so phoned receptionist to see if referrall has been sent yet,it hasnt but ball is rolling ,however, receptionist seems to think that the letter may make gp decide to "pull" the referall?feel I could scream.

23 Replies

Im a little confused about all of this. First of all, Prof D'Cruz is at the Lupus Unit so why did you see another Consultant there? Secondly, when the Consultant was disagreeing with what David D'Cruz was saying, could you not have asked him why he was doing this?

Personally if I had been discharged in February and yet only got the letter today, in June I would write and complain. Thats two reasons for a complaint!!

I find it completely ridiculous for Doctors in the same unit to have conflicting opinions. Its time they got their act together there and decide to have a consistent policy. Its unfair on the patient and it creates a lottery system which causes stress and anxiety on the patient who worries that the outcome of their appointment depends on the Doctor they are going to get! Thats unacceptable.

Im not surprised you could scream and Im so sorry this is still happening. I would impress upon your GP what david D'Cruz said and say that he is in fact in charge of the Unit so is far more experienced than the other Consultant. Ask your GP to make the referral to him specifically.

I would also write a complaint about this when you have time because if you don't it will just go on happening and the more people who complain hopefully the message will get across.


Stay strong, you need to write a strong letter to Dr D;Cruz, via his secretary with what has gone on, (by email), listing your failing health, and also how stressed you are, etc etc, An awful lot of us have had to do this, including myself over the years. Mary F x


Hi Donna: The receptionist is just that. A receptionist. I cannot believe she would be entrusted to make any decisions nor presumptions that she would relay to a patient about what that doctor's intentions are. She has overstepped her boundaries. Simply proceed as though she didn't make that comment because she is not authorized to do so.

Call and ask to speak to the doctor directly. Bluntly, but politely, ask him what his understanding is about how the letter affects your case and if he intends to complete the referral action. If he says there will be no referral tell him you will be calling Prof. D. Cruz to explain your plight including that you feel quite abandoned and intend to ask the Prof. to call him to discuss the disagreements/misunderstandings they have regarding your case in an effort to make the right decision medically and morally.

You are one of many, many patients dissatisfied with the UK healthcare system. One of many patients with many, many diseases all who feel they are unhappy with the health system. The only way to stop the perpetuation is to do it legislatively within the law of the UK. These dissatisfied patients need organization to unite all the patients with diseases under cared for and all the patients with those diseases.

I hate to be the one to throw the tea off the dock, but the UK's healthcare system needs a savior and rather urgently. They need a leader to represent them better in government. Otherwise, they are at the mercy of overworked, under educated, intimidated healthcare workers who don't know if they will have a job tomorrow. If they can kick an ill person to the curb, I assure you they will have no problem kicking an employee farther. Particularly one who might cause ripples in the water.

This is the conclusion I have come to after listening to the patients on this Forum. The stories are the same. The disease changes. It must be done or this will perpetuate itself endlessly until someone does something.

Good luck, donna. It's been such a long fight for you already, but at least you are not alone. I truly wish I had a better answer for you; at least a faster one. Time marches on and I don't see anyone stepping to the forefront to advocate for all the patients and all the diseases that don't get adequate attention.

Take every political action you can. Sign every petition that you believe in. Look for ways to take political action. Write a letter explaining the general plight of your fellow patients and ask every member in the Forum sign it. Then, most importantly, get it to the right person. Bring it to the attention of every Public Charity in the UK by asking for research money and indigent care. Write every pharmacy president. Unite the medical profession. I know it sounds like way too much work for you. It is. It is too much for any one person. It takes like minded people to unite, organize and act. No one person can do it alone. It takes a little work from a lot of people and someone to keep it all on target. Anybody out there want the job? It's only a whole superpower country.

Smiles, warm wishes and plenty of prayers,



Oh Canary I hate to tell you this but every Charity is doing just this from their own corner. There are what are known as APPG's in the House of Commons (All Party Parliamentary Groups), the big charities have one to themselves and the smaller ones band together and have an alliance. These groups are made up of all the political party MP's and we lobby them in order to further our interests.

The problem is lack of money in just about every element of the NHS, so everyone is fighting their own corner. GP's are now in charge of their budgets so they are refusing to take on costs that up until now they had passed to them. Hospital Clinics are shrinking or closing because funds are being redirected. Hospital services are being centralised in order to cut out duplication (at the cost of the patient who will have to travel further) and local services cut out all together. Research funding is non-existent, I could go on and on. Where is all the money going...mostly to fund over paid bureaucrats and managers doing multi-million pound reviews that get cancelled after years, wasting tax payers money and playing musical chairs giving these same people different jobs from the PCT's (which were abolished) and now working in the commissioning groups only probably on doubled salaries!! In short NOT treating patients!

Im afraid its not something that can be organised in the way you describe. A year or so ago a Guy called Gerry Robinson (now a Sir) a very successful businessman did a program for the BBC called "Can Gerry Robinson fix the NHS". He took on just one hospital and tried to turn around the views and finances of the CEO over the course of a few months. It was intriguing watching the bureaucratic machine he came across and the dinosaur attitudes he needed to overcome. He nearly had a nervous breakdown and he is a tough craft-master. It was an agonising watch because it was obvious to all (or it was to me) what the issues were. This was just one hospital can you imagine this multiplied around the NHS and the 1.25 million staff (2009 stats). I wish it was that easy! x


Oh, come on, Apsnot. You enjoyed every second of educating me! I know you did. x Smiles


And Thank you kindly.


thanks everyone, feeling a bit better now, was having a wobble today,the reason that I was seeing a different consultant was that I came back during a time when Dr. D,Cruz was away doing research,the first time I saw her she said she didnt believe I had APS and would see me in 6 months with a view to discharging me,when I went back 6 months later I saw Dr. D,Cruz in the coridoor and thought Oh good ,he,s back I might see him today, but it was the same lady as before.I tried to argue my case and she said maybe I should see Dr D,Cruz in future, to which I remember nodding vigorously, but by the end of the appointment she was saying that I need not come back and I was quite bamboozled by the end and did not know if she had actually signed me off or not.Been chasing it with her secretary all this time and was going to wait till letter arrived but my recent trip to A&E prompted me to ask gp sooner and she agreed straight away, I did tell her that Dr.D<Cruz is back and that I would like to see him,now that I have stopped pannicking I do actually think that the gp would at least ring me if this letter were to make her think I no longer need the appt. and that I should not have got so pannicky over something the receptionist said, I don,t think she really understood, in fact she said that if the letter said I didn,t have APS then surely that was a good thing and wasn,t I glad!

By the way, back in 2006 my diagnosis was given to me by Dr. D,Cruz on just family history, symptoms, three prem deliveries (with problems all the way through two of the pregnancies), and one possitive lupus anticoagulant, he also queried sjorgrens when my history og gastro problems came up in the conversation and so he did a shirmer test which was bone dry, but the blood test came back negative( I also have a dry mouth and the dentist prescribed a spray)The reason that the other consultant says I do not have APS is because two subequent blood tests have come back negative, I have listened to the speech on seronegative APS with great interest.


Yes you are right to push to go back to original consultant, they should not be ignoring patients with sero negative APS, it is in my own opinion highly unprofessional and goes against advice by many, including at our last patients day, Sorry that you have had the unnecessary stress. Mary F x


dont think anticoalgulant was the word I wanted there , sorry, its been a LONG day!


I have had a similar experience when a doctor who has never seen me or treated me cancelled my april appointment at the Lupus clinic, telling me by letter that he had done this and that I didn't have Lupus or Antiphospholipid syndrome. I was diagnosed by Proffessor Hughes with these problems also with Sjogrens syndrome. I contacted the PALS Liason group at the St. Thomas' and have an appointment with Dr. D D'Cruz in august this year to talk things through. They are very helpful and you can contact them through the switchboard, they are there to help you with your problems.

Good luck, don't give up if you don't fight for you nobody else will as I've found out

Best wishes

Carole J


Well Done Carole! Thats so appalling to be treated like that but unfortunately you are not the first one that we have heard that this has happened to. Did this Doctor give a reason by any chance as to why there was this disagreement in the diagnosis?


gosh, how appalling to be told this by someone who hasnt even seen you !thank you for your advise and best wishes.


Hi all,

I had the same experience. I was diagnosed with SLE, Sjogrens and Antiphospholipid Syndrome by Graham Hughes in the 1990's. I have been seen 2-3 times a year since. Got a letter from some doctor I'd never met or heard of; cancelling my appointment and telling me I did not have any of the above conditions!!

I phoned St.Thoma's and eventually received another letter from this doctor, repeating what he had said in the first letter. He also told me that if I had APS it could be treated by any doctor and had nothing to do with Lupus !!

Emailed Angie (St Thomas's online nurse) she contacted Dr Khamashta; who I had seen in the past. He replied and asked that my GP re-refer me, which they did.

I saw Dr Khamashta last week, who assures me I do Have the conditions I had been diagnosed with and treated for! It was such a relief to hear that I had'nt fallen into a black hole and done a Dallas and dreamt all that had happened over the past 20 yrs or so.The 'doctor' who wrote these letters should be sent for some training regarding Autoimmune diseases and should apologise to all patients concerned , before being given his P45 and told to find another job ( with no reference).

Just to prove the point, after being told I did not have APS; since seeing Dr Khamashta 9 a great person by the way) a week ago; I have developed another DVT (whilst on Warfarin)- my local dr. tell me this is what you can expect from a person with APS!!!

My advice speak to St Thomas's and /or email Angie St Thomas's online nurse ( for lupus).


If you feel up to it please make a formal complaint through PALS at St Thomas about the behaviour of the other Dr if you feel so upset with this incident. Only then will it be looked into officially. I fail to understand how a Doctor who has never physically examined a patient can diagnose them and decide that they not only DONT have a condition that other Consultants have decided they have but have been treating them for over a number of years. What is going on? Is there some sort of medical disagreement going on at St Thomas or is it more political than that? Its one thing for Doctors to have medical opinions but when patients start to get drawn in and suffer as a consequence something has to be done.


Hi APs,

I think it is all down to money, in some way!

I live in Wales, my LHB is happy to pay for my care at StThomas's, as they freely admit they cannot provide the care I need, so I am actually making them money. The other thing is, that in the letter I rceived discharging me from the Lupus Unit in St Thomas's; one of the reasons was that Wales no longer would pay St Thomas's for any care they provided for a Welsh patient- this was totally untrue. I contacted my LHB, my GP, the Welsh Government and the Welsh Assembly (they are different). In fact the Welsh Government Health Depertment identified me and agreed that they ahd authorised payment for me to be treated by the Lupu unit in St Thomas'.


It seems that this is happening an awful lot!, does anyone else find it flabbergasting that Drs. are disagreeing with diagnoses made by the most top people in the field?!


I am appalled that patients are still getting turfed out of St Ts for various (any) reasons. I haven't given up my fight yet. I did see someone known to many of us privately last week and whilst I won't name or put words into his mouth, the gentleman concerned didn't seem happy with the situation at St T's.

In my case there is no doubt that I have Hughes, at least nobody argues that, and I was diagnosed with mild Sjogrens by Prof H a few years ago. The irony is that it seems that the Sjogrens has been pretty rampant until very recently giving me all sorts of issues with pain and dry mouth etc.Irony because my dentist considers it so serious that she has referred me to the oral unit at...............Guys!, (There is a Sjogrens specialist there). The very hospital who seem to have overruled the St T arrangements (my St Ts discharge letter came from a Guys man) Of course, if St Ts had seen me in January instead of cancelling that appointment, I should no doubt have sorted matters and not had to put up with the pain and severe sicca which led to may other serious issues. I have in mind some Freedom of information requests and then a formal complaint. I want to know who was responsible first and how many of us are affected as well as a few other things.

A question for everyone discharged by St Thom's. Have any of you been supplied with details of alternative care arrangements (satisfactory or otherwise) I got no suggestions from them, just dumped and very much to the annoyance of my GP.


Hi Tim46,

I did try to ask the people in St Thomas's & Guys (where I was eventually sent to) where I could get alternative treatment. The 'Dr' who wrote me the discharge letter- wrote and told me that any doctor could treat me!!!!

Kind regards



It is a tragedy that this is now the sort of answer you can apparently expect from St T's team. They used to be our saviours.;-(


In my second to last letter,it states that I have a management plan (news to me) so at my last appt I asked what that management plan was, and she replied that I need to learn how to manage my own condition(I have, but I just wondered what this "plan" was as no-one had ever mentioned it to me) and has suggested that I have cognitive behavioural therapy!


Just reading all this, has anyone put together a database of who the Dr's are that are sending these letters? Is it the same one in every instance, so you can all complain about the same person, or is it a group of "Administrative" Dr's who don't actually deal with patients.

Perhaps, if you don't want to name and shame publicly here, someone could be the base for the names of those sending the letters and see if there is a common denominator.

'Just and observers view'


Yes already building a picture.


It seems the good name of St Thomas's is really being tested here! With all the hard work and research by the top men and woman i have had the pleasure to listen too, it must be a devestating blow and potential backward step it this is allowed to continue...

I am so glad people will be reporting this and complaining using the official channels because any complaint will need to be addressed and have a response within a set period of time. I am due to see Prof K in October i just hope i dont get cancelled because if i had not seen him last July i know i would have never been put on plaquenil or had the schirmer test done but still had the label of fibro & depression which i told another consultant was just damaging!

we have a life threatening condition yet it seems to me i am hearing alot of people on this forum have their sjogrens syndrome squashed or despite all the symptoms are told they dont have it due to a negative blood test! so why dont they do a lip biopsy? there must be a financial gain to label people depressed anxious and therefore funding to be made for the coping classes alot of specialist centres offer! sorry i am just so sceptical about the whole thing.

So glad to read something positive is being done to gain evidence of what is happening her. Wishing you all well kathy xxx


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