Putting aside the discharge matter for the moment the word in the letter that brings total alarm to me was the word "controversial"! How can a Doctor write to a patient and admit in writing that a disease that the unit he works on, and was set up by the very Doctor who it was named after, is controversial! If that is how Doctors at the unit now view APS we need to be told because it means its going to be a total lottery who you see when you attend the clinic as to if you are treated correctly as I certainly would not want to be seen by a sceptic.
I am appalled, disgusted and in shock.

I agree with you entirely. I too read and re read that articulate sentence. I fear that as Prof Hughes no longer works in the NHS and that unit, drs who disagreed with his protocol can disregard as they wish.
I worry about our position very, much now, especially sero negative. We are at the mercy of human nature and all it's differences as to how we will be treated in the future.

I too am dumbfounded, especially about "The anti-phospholipid syndrome can be perfectly well looked after by any haematology department since it requires only monitoring of the warfarin and adjustments of dose as necessary"................If only this were true......all of us Hughesies would be leading totally 'normal' lives, symptom & distress free............

AGGGHHHHHHHHHHHHHHHHH #@*&$£!!!!!!!!!!!!

I believe that there are many drs who think that a little dose of warfarin prevents clots and also that APS does not come with other symptoms.

Yes this is dreadful.. and add a sero negative diagnosis to it despite clinical and serious incidents and ... this leaves us in a difficult position. I have already been in that position, with myself and my children.. thankfully not so much now. I am trying to do my bit both nationally and locally to raise the profile of the disease and get things written.

Awful, and sorry you had to receive such an unprofessional letter.

Mary F x

I am slightly more calm just now. Let me please make it clear that I am raising this for all Hughes patients. I would not accept being made an exception, we must all be treated equally and fairly.
I find it truly incredible that the writer is associated with St Thomas because the expressed attitude about Hughes is the very one that drives us all to St Thomas' to escape from. It is truly incredible coming from such a source.
We need more than a few aspirin or warfarin, our conditions are immensley complicated and frequently changing, the last time I was a St Thoms one of my questions was answered with a comment that "we don't know, it is still a new disease thatcwe are learing about all the time" well not without the patients to learn from!
I don't doubt for one moment that I am alone in that my symptoms have changed over the last six months. I presently think a change of medication might be appropriate but my experience of my local consultants is that they won't have a clue.
I wonder what the writer thinks centres of excellence are for? Does he seriously suggest that services are adequate and equal throughout the country? Has he ever read these blogs or those of Prof Hughes about the problems we have? The one constant feature is the problem of professionals understanding, or not, our illness, well that and the close shaves we have with I'll-informed over confident doctors who don't know best.
The reality of this decision being an economical one and not clinical is blindingly obvious. I do have sympathy with that position but I expect doctors to fight for our rights for proper health care not to do the dirty work for government.
I can see this running and running, and becoming national issue, or should I say a national disgrace as it will no doubt extend to other specialist services if we just lie down and take it..

Yesterday I attended my local hospital.. in the blood clinic, the waiting room was so full, nowhere to sit in the huge space, and patients queuing up out of the door and down the corridor - staff cut backs. The paediatric services, where three secretaries sat who always worked at a frantic pace... a long queue of fed up patients and just one secretary now. Some months back i started chasing my own paperwork for myself and children and cross referencing it to all medics involved in our care and mine.. as there is such a potential now for loss of vital communication and information. M x

Well said......Perhaps in the first instance you should respond to this person and say exactly what you have said here and copy to the Chief Executive Ron Kerr (link below). It is the passion of the moment that can have an affect but is often diluted when time passes and then asked to repeat the same sentiments.

www.guysandstthomas.nhs.uk/...

I agree - even on the HSF website I was reading the part where it says people can expect to lead a near normal life with medication, so I was full of hope that once I started on warfarin all would be hunky dory, yet I still suffer each day. This gives the impression that all is fine - yet its an illness that attacks every part of our body - and even at proffessor and consultant level they are at a loss when we arrive for appointments or present to a & e with symptoms, and question whether we actually have what we have at all!! I have been looked down at and questioned,and misbelieved, and a stroke was missed for two years - i found my pot of gold getting to st thomas' and the thought of being discharged scares the hell out of me!!! How will we ever be taken seriously as patients if at the heart of our top leading hospital we are treated like this???

Hello, not posted here before but I am always dropping by and think this is a wonderful supportive community. I feel that I must add my anger and dismay at what is happening at St Thomas'. I have lupus and possible APS along with lots of other autoimmune conditions.
I currently attend St Thomas' but think that I will be getting the dreaded discharge letter as at my last appointment my consultant tried to discharge me back to my local Hospital, after much discussion it was agreed that I would have shared care. It took me a while to get a referral to St Thomas' but my argument to my GP was this is a national centre of excellence and since I almost died from lupus complications a few years ago I felt I had a good case. The language used in this letter is quite shocking and I feel very sad for the patients who will feel abandoned by the very centre that they thought would always be there for them. I can only speak for myself, Lupus and it's complications plus the probable diagnosis of APS following positive bloods have robbed me of my career, some of my family and friends, my health and very nearly cost me my life - so no I cannot lead a near normal life with medication!!!!! Don't get me started on steroids and immunosuppressants.

Quick apology, my first post and it's all over the place, sorry just very cross at the moment.

Thank you for your first contribution you are certainly most welcome and we hope to see you back again soon. We certainly understand your frustration and I think your first blog was excellent!!

This is so upsetting. I'm in the States and am so thankful to have found this site and be able to share and learn with you. Especially hopeful has been what St. Thomas has been doing, something lacking here. APS is still new and so needs places like St. Thomas. To know that you may not/won't have that availability has got to be so difficult.

Here, gosh, I don't even have a hematologist. Have gone to 2, diagnosis and won't bother with the story, but it seems that primary APS without lupus is largely ignored. Not meaning to insert my story, the point being that it is lousy what is happening and I'm with you all.

Change needs to happen now!

Unfortunately my experience with St T has always been along this vein. I wonder now whether the timing of my referral to them (August 2012) is part of this? I have not had a single positive experience and strongly believe that from the outset that they were never going to run with my case. This at a time when they've been gearing up to discharge hundreds of patients. The letters i have received have all been of a similar tone too which leaves an unpleasant taste.

Not to worry people but I think we have wider issues with the forthcoming event of the GP's holding more funding for health of Patients. I have deep concerns that my contact with my Rheumy at the local hospital who treats me will be cut to save money within the new GP consortiums.

There is so much waste within the NHS that those of us who need care to keep well and avoid using acute care resources seem to be the target for short thinking cost cutting. They spend and waste money pruning and amending things that work. Suits sit at the department of health coming up with grand plans that are unrealistic and unworkable. (Yes I did work in the NHS and saw this first hand)

I had to fight so hard to get under a Rheumy and to be taken seriously. You have to fight for all treatment now at at a time when you need to avoid stress.

You are right. But if we are discharged back to a GP who then won't refer locally and they themselves have an ego which assumes they have the knowledge when they don't, we will all be in trouble.
My GP, an up till now accommodating and helpful person has succumbed to the CCG and is looking at everything with a fine tooth comb. I have been given Vit D without any argument for three years on the advice of both my immunologist and St T and my latest request was turned down flat with this response despite reminding of the letters and sending studies to back it up.

"More or less everyone in the UK is deficient in vitamin D and if we prescribe for everyone with a low level if would break the budgets. All the local consultants and prescribing advisers agree that its reasonable to prescribe for people with levels below 25 but after that its recommended for people buy supplements"

Doctors know that by setting a limit of 25 they will never or hardly ever have to pay for supplementation even though this report (link below) states clearly that its not a food and that people should supplement if under 80. I have an appointment booked in two weeks when I will be asking if the NHS now pays for firefighting and has given up on preventative medicine!

www.icms.qmul.ac.uk/chs/Doc...

I was also told I could not have a bone scan, despite being on heparin, being Gluten intolerant and both Prof H, Prof K and the Dietician they sent me to advising one. Can you imagine what it would be like if I got discharged back to my GP?

I can sympathise fully with everyone. I attended the Lupus clinic and was discharged 4 years later. Apparently blood results can often show as negative. In the past I have had extreme bouts,quite severe symptoms lasting up to 6 weeks. At one time I felt I could cut my throat as I was feeling so awful..
I believe Prof. Hughes retired didn't he?
Most GP's ask ME what APS is! In my case I think it was brought about by taking zOCOR, a statin. Statins are thought to cause kidney and liver problems. I am on a high dose of Atorvastatin and my kidney function is now stage 3.
As for hospitals, where I have been many times in the last 10 years, I have had to wait, sometimes in a wheelchair, for up to 4 hours in the cold, to be seen, and then another 4 hours before being brought home.
I find there are too many junior doctors ,and I am not alone in saying this, that many of them don't know what they are doing, and one nurse this week said I had cellulitis (and I am not fat), but it is vasculitis I have.

I'm an American so I don't believe I have the right to comment on the UK's healthcare system other than as an observer. What I observe is you need to organize, designate a leader and find an attorney who will take this on pro bono, as a class action suit. You must have a few hundred discharged or destined to be discharged already. If your government begins to make medical decisions and succeeds only once, it will happen again and again, disease after disease until all preventative care is eliminated due to cost ineffectivness. It is angering to watch this being done to a group of people that could so easily be me. It brings back memories of the early 1980's when AIDS was first discovered. Hospitals were innundated with newly diagnosed cases. It was spreading quicker than they could learn about it. Insurance companies refused to pay for it. They knew the patient would die before the case made it to court. Then the disease hit the educated. They began an organized fight against the insurance companies (who also banded together). They took it to the Supreme Court and won (to make an incredibly long and painful story short). You need to unite, get good leadership and stop them or make them find a better way to handle it. To me, it's not that the hospital is overloaded, understaffed and under educated in this field. It is the disgraceful tone of the letter and the ill mannered, uncaring way they have handled these patients whom have been singing this hospital's glory generating charitable funds for it. That letter spoke to them as though they were just "cases" without lives, or faces. Somehow, they are failing the international DO NO HARM part of the medical oath. By action of this letter they have obviously done harm and made it clear they intend to continue. Is there no precidence already set in English law that would simulate this? Perhaps with a different hospital? Perhaps a letter to your Bar Association to find out which law firm would be willing to take this on pro-bono? I wish you all the luck in the world. This was poorly handled by the administration of this hospital. A letter like that never should have reached one single patient. I do not believe they had Dr. Hughes' input.
Canary

Canary,
Thanks for your input. I think it is early days just yet to know just what we as a group are dealing with here, and whether it might be representative of the treatment of other conditions that require similar sorts of care are experiencing.
Certainly I was shocked by the reference to "many hundreds". of discharges.
In the days to come I hope that we will get a better understanding of the full nature and extent of the problem and try and come together in some way to plan what we are going to do about it.
Several sets of enquiries are already in motion.
I would urge all concerned to "watch this space" and for those in the UK who have been affected, I would invite you to add your "name" to this thread so that when time comes, those affected can be contacted.
Tim

Disgusting! The NHS is a joke.. I'm sure many of you have suffered at the hands of GP's, doctors and even hemotologists. I know I have several times. I'm also sure that many of us have had to teach our GP's about APS as Pluto5 mentions. I did. Even now they keep emailing St Thomas about what to do with me. They might be getting rid of patients but they will now be bombarded with phone calls, emails, faxes from hospitals and GP surgeries all over the country instead of showing an interest.

Maybe someone should get the professionals to read this site. Maybe then they will understand that our symptoms come and go, they don't just disappear because we are on meds. Fuming doesn't come close!!!

MJ x

Hi
Just to add data to the discussion, I too was discharged last month from my Rheumatologist, with the reason that a Haematologist would be better qualified to manage my blood issues! I was also referred to a neurologist to see if further medication could more effectively manage my Migraines.
I am in the the county of Nottinghamshire, anyone else had similar experience in the county?

I even asked if the discharge was driven by a national agenda within the NHS and the reply was that it was better to be cared for by haematologists as rheumatologists have little knowledge of clotting disorders and are more concerned with connective tissue disorders.

Seems strange then that the Dr who is in charge of this department is a Rheumatologist! Perhaps its his distaste of clotting disorders or lack of knowledge that is driving this ignorant campaign!

Hi tim47,
I was sorry to read this, as it means there is little chance of me getting to see the doctors in London, as I'm based in Devon like yourself. This does look like a cost saving exercise to me. It seems they want throughput and not ongoing investigation.

I saw my Haematologist at Derriford last Thursday and he said that my blood results are negative (only Haemoglobin raised) so I've not got APS, whereas I know you can still have it even if results are negative. All symptoms point to it.

They took my bloods (different ones this time) and will see me in 6 weeks time. However, he said that if nothing shows up at that time, I will be discharged back to my GP. He admitted that they have NO idea why I am producing so many red cells, but that they could test forever and not find the cause. In other words "Go away and keep taking the tablets".

When I tell them about the various symptoms I have, they just say "interesting" but don't write it down on question further, in other words, they're not interested or not listening. I would have hoped there could be some serious consideration of all symptoms (we'll all have small variances) and some clear investigative pathway, not a yes / no / on your way mate policy

APS seems to be an inconvenience for Haematologits!.

I am very sorry you are having such a difficult time of it. Is there any chance that you can get a copy of all your blood test results and then make an appointment to see Prof Khamashta at London Bridge? I say him because you won't want to wait 6 months to see Prof Hughes and Prof K is the only other Doc with a good and positive understanding of seronegative APS that I would be comfortable advising you see there. The cost would be around £200 for the consultation but at least then you would have afirm understanding of what's going on and he could write to your GP and specialist down there telling them how to manage your treatment. Just a suggestion. I know we should not have to do this but when you are in your position I really don't know what else to suggest. sorry.

I will contact you via private message shortly

Antiphospholipid antibody syndrome is an autoimmune disease. Its not just a a warfarin deficiency. The management of the condition may require imput from neurologists, rhematologists, obstetricians, etc depending on the patients disease presentation.

PS there is a very good rheumatologist at Freeman Hospital in Newcastle who is very knowlegeable about it.

please can you pm me with details of this rheumatologist thank you

Thanks Herb, I recall Prof Hughes saying it seemed likely that Hughes could cause problems wherever blood was present. That rather suggests it might require care from countless specialists . Leaving it to haematologists has caused me great problems previously.
Newcastle! My late father's home area but a bit far from me now.

I also had the dreaded letter before Christmas, I have written back to St Thomas' but not yet received a reply.
my GP has agreed to refer me to a rheumatologist at Manchester Royal Infirmary who has been recommended to me by the Lupus group on Health Unlocked. He agrees that he is not capable of managing my conditions without consultant support.

This all reminds me of an old film called Logan's Run.

When people got old or sick they were sent to something called 'Carousel' which basically killed them and turned them into something called 'Soilant Green' which was put into the food chain, bit like horse meat!

I think this is what the NHS would like to see done to sick people!

In the news this week there were reports of 1200 premature deaths in one hospital alone with other hospital trusts being implicated for similar episodes.

I've just discovered this thread... hence the rather late (and rather long) response. I too have been discharged from St Thomas' but even more alarming is the fact that I was 'de-diagnosed' at the same time.

On my last visit I saw a very young registrar, together with a student, who had obviously been given the unenviable task of getting rid of patients no longer worthy of their attention. There were no consultants anywhere to be seen.

She told me that my diagnosis of connective tissue disease was dangerous because it's a blanket term that can cause doctors to overlook anything else that might be going on in the body so she was removing it from my file. Likewise, the diagnosis of Sjogren's has been removed and should now, apparently, be referred to just as Sicca symptoms. So the only thing we definitely agreed on was the positive diagnosis of APS. My body certainly doesn't agree because I still feel as rough as usual and I don't think my insurance company will believe I suddenly recovered from conditions that are known to be lifelong.

When I received the follow-up letter confirming all this, I took it to my GP for her opinion. She doesn't even bother with routine checks so I'm certain I won't get proper monitoring for diseases she appears to know virtually nothing about. She said that she thought it was unacceptable too and that I should be under the care of a specialist and she didn't understand why the diagnosis had been changed either. We therefore agreed that the best course of action would be for her to write to Prof K, at London Bridge, for clarification. This was back in November and I've heard nothing. Prof K is always very good about copying me in on correspondence so my GP obviously didn't do it. When I get enough energy, I'll pay her another visit and perhaps she can explain why!

It took me years to get a proper diagnosis, and thereafter proper care, and I reached St Thomas' after suffering a great deal of frustration with a local consultant who invariably cancels his clinics. So where do we go from here? I guess those who can afford to pay will have to fork out huge sums of money for care at London Bridge Hospital but what about everyone else?

I think this is totally disgraceful. We all understand the strain on the NHS and its budgets but I think they should have at least been honest about the need to toss us back to the provinces. And as for the 'de-diagnoses', how can that be when it was their clinic that diagnosed in the first place? Are they now suggesting that their original diagnoses were unsound?

I have had a lot on my plate this last year and haven't quite decided what to do about this yet but I certainly think it's shoddy treatment and we shouldn't all just quietly creep away. In the meantime, I'll watch with interest to see if anyone else has taken further action and what response they got, if any.

First of all dont assume your GP did not write to Prof K, it may be that he has not responded.

2. If you have the time, will power and strength then I would respond to that letter by writing more or less what you have written here and asking those questions straight back to the person who sent you the letter and make it clear that both you and your GP do not agree with both their dx and discharge and you want to be given another appointment with another Doctor for the decision on the dx at least to be reviewed.

3. You must take this to your MP along with copies of letters, dates and anything relevant. He/she is the only one who has an obligation to fight your corner.

Like you I am totally disgusted with whats going on. It is one thing to "re-direct" patients to local (non-exsistent) services but to magically try and remove medical conditions to make it easier for their process and use it as an excuse for doing so is another thing entirely and shows just how low things are going.

Im really sorry for you, it makes me terribly depressed to read these stories. On the bright side you have a supportive GP if not knowledgable, spare a thought for those that have all of the above and NO GP!

So far my letters have fallen on deaf ears, I suspect the deluge they are getting has turned that into a common policy....sadly. xx

Well let me join the ranks I to have been discharged from the hosptal the reason no change in on diction and that my local hospital can cope well enough, but if anything changes I an come back as long as my gp refers so I join the ranks f banging my head against local dos doors. What was intresting was the painin my neck leading to numbness is not important oh the small head rushes no important and more memory issues were not suffient enough new symptoms to want doing anything else and the cream of the cake been arguing with go o have MRI was told to expensive when said his to dr he said I agree. No need and cancelled it.........

So to say the least mad is not the word be warned if you have had no major change in conditions in te last 3-4 months the unit seams to be rereferring you back to local

Deep joy is life I will post a less rants message soon

P

Just an update. A little while ago I applied to St Thoms for a complete copy of my patient file. I expressly requested details of all the blood tests carried out with results. I want any new carer to know what tests they did etc. We have a right to a copy of our files, and there may be a charge, but I have said that I expect that in the circumstances, namely that they have dumped me without a thought for ongoing care, I expect them to waive the charges in the circumstances. I have heard nothing so far. Others may feel that we should at the very least had some sort of discharge letter to include out St T's history and the things they look for when doing bloods.
I am presently trying to word a Freedom of Information request to get more information about what is going on.I am a long way from being finished with 'the St T's management' yet!

They have 40 days in law to respond to you. Here are some links that explain the process but Im sure you have probably seen them.

www.guysandstthomas.nhs.uk/...

www.nhsmedicalrecords.org.u...