Sticky Blood-Hughes Syndrome Support
8,349 members8,525 posts

London Lupus Unit - patients being discharged

For those of you who have been treated at the Lupus Unit, please beware that there will be some major changes taking place. These changes have been on the cards for four years but are only just being implemented. The following is a letter from Professor David D'Cruz, Clinical Lead at the Lupus Unit:

The Louise Coote Lupus Unit, St Thomas’ Hospital, London.

I am writing to let you know that the process of reassessing the services we provide in the Louise Coote Lupus Unit is now under way.

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

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

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

These changes reflect what is happening in hospitals around the UK as part of the changes to the NHS including the new commissioning arrangements.

So, to put it bluntly, the unit cannot afford to keep treating patients unless they are high-risk. Many APS only patients are being referred to Beverley Hunt's team at Guy's Hospital but you should receive a letter which will let you know the route you are expected to take.

I personally think it's shocking what the government is doing to our NHS and this is just the tip of the iceberg ... just wait until the CCGs take over the GP networks. Care UK here we come - frightening when you look at their track record!

17 Replies

Yes, that says it all. Mary F


That letter has been written with careful thought and should be read between the lines as far as what he hopes patients are going to do about it. I know what Im going to do and I hope everyone else does the same!

Its time that everyone realises whats going on and the impact thats going to have on them personally.


I was discharged from St Thomas's Hospital and referred back to the Haematology clinic at my local Hospital in October. The consultant at my local hospital wrote to my GP saying I was under her care and detailing my appointment with her and where she listed my medication it said:

BLACK QUINELL ....................I think she meant PLAQUENIL ........Give me strength! .....who's this reshuffle meant to benefit? Obviously not the patients!


Id like to think that was just a typo given that most Hospitals now send all their typing out to India and then back again to be personalised! One likes to imagine that they have no idea what Black Quinell is against Plaquenil. However if a GP cant work that out and prescribes something that has a contra indication then.....

Frankly Im loosing the will to live today with all this news! :-(


I'm not complaining about having been discharged but GPs often know very little. This week I saw a GP regarding getting retested for anti cardiolipin antibodies as requested by Prof Hughes. She knows I am on warfarin, but after reading his letter she said does he want lupus anticoagulant doing. I had to remind her that is not possible. I am to begin plaquenil and asked should I see her for a follow up, she laughed and I won't be able to tell you anything you know more than me. How are we safe in the GPs hands.


I completely identify with how you feel today APFAB I feel dark clouds looming and yet another battle to be looked after with this illness.

x to all


I had a email conversation with my GP last night who is normally very understanding and supportive. I sent her the letter from Prof D'Cruz and said I was expecting to be discharged myself. She knows I run a support group and do this on here but responded by saying:

"Given the situation that the NHS is in with limited resources and so many new treatments being more expensive its not possible for this to continue. It makes sense to reserve the specialist clinics for patients who need to be seen in them and not to have them blocked up with routine review appointments. Its much more appropriate for people to be referred back when they need to be seen about a new symptoms or a new development in therapy. No one is saying that patients with complex or high risk conditions should be ignored. The point is that the ones who aren’t having complex problems can be reviewed in more appropriate places.

Reading about this has obviously caused you a lot of anxiety. I know you like to be well informed but maybe its best not to read too much until you know what is actually relevant for you".

Ouch!..... I thanked her for her response and said in a perfect world the system should work as she suggests but unfortunately not all GP's and PCT's come equal! Perhaps her attitude will change when she is swamped with patients clambering for appointments with her surgery having been discharged from their various clinics and now need the services of their GP.

I then got another one from her explaining about the SW London CCG which she seems to know quite a lot about. Perhaps that explains things!! Those GP's that are in favour of it had better not complain when their workload doubles or worse. :-(


I am really tired of being threatened. 11 years in I am exhausted !!!! I had hoped that Tommies cared about their reputation for excellence. I didn't voted for this lot and feel exceegingly let down by the previous lot who find it easier to be in opposition rather than find a way through the global mess! I am exhausted nat being the local authority and trying to watch my back with escalating problems from essentially an untreated infection 3 years ago!

I don't want to lose my pancreas or have more strokes etc. I would like to live for awhile longer. I am job hunting too having worked since I was 14 but because of delay in diagnosis I had a low occupational pension LOL They have me every which way. Where is this woman's liberation?? Sorry for the gloom.Gemma2012.


The lady I care for has recently had a whole series of minor fits or seizures. Over last two months has had now a series of 5 serious fits. She is progressively getting worse, has been identified as APS in need of platelet treatment. She needs thinning but cant take pills very well. So of course she has been abandoned back to her GP. Who knows nothing about APS or SLE etc. So what do IO do now. IF She changes GP she will be worse off without any continuity. IF she doesn't she will have a real chance she will not get help from Lupus centre! So Probably while eminently save-able at the moment she may well get significant brain damage and all because of cuts.! Any one with a good idea, except brake the door down!....:( Andrew


The GP can organise to have medication made in a liquid form for those that can't manage to swallow pills. This is an expensive option but there again if there is no other way to get medication in to a patient that's what has to be done. If its warfarin could she be swapped to heparin and manage the injections instead or you do them for her?


As the letter says. Its the tip of the iceburg. This Government's ultimate aim, is to privatise the NHS. We all should be writing to our MP's. I for one will be up the --- ----- (you no where) without a paddle. If they transfer me back to my GP and local Hospital. The times I have had to take information for the medical staff to read, when ever I attend my local hospital, which leaves a lot to disire. As their knowledge of our conditions is scanty. I have said for a long time , that the Government are not for the people. Rose tinted glasses need to be removed from the people of our country, to realise what is happening to our NHS.


Unfortunately the NHS is a bottomless pit and funds have been mismanaged for years, for example one trust was paying £23 for a £3 loaf of gluten free bread! This sort of gross inefficiency is not sustainable and we, the patients, are now paying the price.

I have a friend who is a contracts manager for a local hospital and he is tearing his hair out on regular basis due to the chronic inability for decisions to be made. e.g. he suggested that they buy 6 specialist beds instead of

'leasing' them as they would get their money back and own them after as little as 3 episodes of use. He had endless meetings but nobody could agree so they are STILL leasing this Very Expensive equipment!

It's this type of problem that is causing our clinics to close. I wonder if it would be allowed to happen in the Private Sector?

If I sound angry it's because I am.



A few years ago the BBC showed an interesting documentary about Gerry Robinson who went into a Rotherham Hospital to try to apply his managerial expertise on them to see if it could work in cutting their waiting lists and save them money. His feeling was good management can work in any environment.

What you have written Sue reminds me very much of that program and the problem Gerry came across which I suggest are an endemic culture in the NHS. As he said then, he wanted to bang their heads together!

I believe you can get hold of this video if you google it.


Yes I remember watching this, it made for good viewing! MF x


Oh and in answer to your question - if they were owned by some asset management company or all on profit or performance related targets as most of the private sector these days, they would not know what had hit them!


Yes I remember the programme it was very good.


Wow well that's me back to my little hitler gp, guns at the ready fire. Cheaper than medicating lol well is we going to go down the toilet lets do it together lol


You may also like...