From the National Magazine

Thirty Five Years in Lupus

Dr Graham Hughes, Lupus Unit,
St Thomas' Hospital, London

The London Hospital
As a country boy I loved "The London". Pitched into this great hospital in the East End of London I relished every moment. As medical students, we had very clinical "hands on" training, and as young doctors, almost unrivalled clinical experience. It was as registrar in Rheumatology, working for the inspirational Dr Michael Mason in 1967, that I first became interested in lupus, and was given the task of writing a chapter on lupus in the well known text book "Mason and Currey" - literally thrown in at the deep end!

New York
In 1969 I won a scholarship to work and study in the USA, and moved with my family to New York. Here I worked for Dr Charles Christian - known throughout the world for his work on lupus. These were unforgettable times - I was fortunate enough to be one of the team which introduced the new anti-DNA test - now the standard test for lupus. Chuck Christian was a great leader - a modest man who "led by example". All of us loved and admired this great man.

Hammersmith
In 1971 I returned to Hammersmith where I set up the UK's first dedicated lupus clinic. I soon realised the need for a special clinic for lupus pregnancy, and, together with colleagues in obstetrics, set up the first lupus pregnancy clinic. In those days, many lupus patients (perhaps the majority) were strongly advised against pregnancy - the risks being too great. How things have changed. These were busy years, as well as teaching and clinical work our unit was very active in research. We received two enormous "boosts" - firstly, the visit of Princess Diana and secondly with the support of LUPUS UK, the building of a new lupus research laboratory at Hammersmith.

Some of our research "firsts" were the first genetic study showing lupus to be associated with a defect in complement ("C4 null allele") (with Professor Richard Batchelor), the first study showing impaired spleen function in lupus (Dr A Pinching), the demonstration of low C-reactive protein in lupus - important in the diagnosis or exclusion of infection (with Dr Mark Pepys), and the first published study of plasma exchange in lupus (with Dr John Verrier-Jones). But the two innovations of which I am most proud were the lead in the movement towards more conservative steroid therapy, and of course the description of the anti-phospholipid (Hughes) syndrome (see below). Word of our lupus clinic spread and our patients came from all over the country. One such patient was a young, wheelchair bound Cheryl Marcus. She had been told by her consultant that there was no cure. Her father, a GP, sought a second opinion in the USA. The American doctor, Dr Naomi Rothfield, asked "why come all the way to the States when you have a lupus clinic in Hammersmith". Cheryl, as you all know, came to Hammersmith, got better, and went on to set up British SLE Aid - the beginning of LUPUS UK - the rest is history!

Hughes Syndrome
One of the advantages of running a large clinical practice is that you get to spot disease "patterns". In the late 1970s I saw a group of lupus patients with a distinct set of features - recurrent blood clots, brain problems and recurrent miscarriage. I spent a long time detailing the clinical findings in these patients, and realized that here was a distinct syndrome.

With my research fellows including Nigel Harris and the late Aziz Gharavi, we set up assays (antiphospholipid antibodies), and in 1982 I presented details of the syndrome at the "Heberden round" at the annual meeting of the British Society for Rheumatology.

In 1983 we published a number of detailed papers in the BMJ, Lancet and other journals describing the syndrome. What became very clear was that there were many patients in whom no other features of lupus were present. This syndrome became known firstly as the antiphospholipid syndrome and subsequently as the Hughes syndrome. This discovery gives me as much pleasure as any formal honour ever could, for I believe that it changed the course of lupus.

The Louise Coote Lupus Unit at St Thomas' Hospital
In 1985, the opportunity came to set up a lupus unit at St Thomas' Hospital here in the centre of London. The dream was to provide a unique dedicated service - separate from "conventional" rheumatology or nephrology in which specialized clinics could be set up - for instance a Renal Lupus Clinic, Hughes Syndrome Clinic, Combined Lupus Pregnancy Clinic, Vasculitis Clinic, Nurse-Led Clinic, and Skin Camouflage Clinic and so on. In parallel with the clinic (now possibly the world's largest with 3,500 patients on the register) we run an active research programme, attracting young doctors from all over the world and a huge teaching programme.

Research
There is enormous research effort going on in the fields of lupus and Hughes syndrome. The good news is that a lot of this research is international - our own unit here, for example has published collaborate research papers with groups in France, Belgium, Spain, Italy, Israel, Singapore and Japan. The international journal Lupus, of which I am the editor, is now published monthly and carries a high "impact factor" in the world of science publishing.

At long last there are new drugs appearing, and for the first time in my own living memory lupus doctors are being sought after by pharmaceutical companies, rather than the other way round. And there is more. Research in lupus is having an impact on other diseases: other specialties. For example in the world of heart disease and atheroma, and in the world of neurology and obstetrics, where Hughes syndrome is now known to be the commonest treatable cause of recurrent miscarriage, and a significant cause of migraine, memory loss and seizures - even giving insights into some cases of multiple sclerosis.

For patients, this research has produced direct benefits - better survival, less steroids, fewer cases of renal failure and, for many, a better quality of life.

Money and Politics
My own philosophy is simple - if you suffer from a complex disease, you should have the right to see real experts in that disease. Unfortunately, many, many patients don't achieve this goal. Sadly, the current NHS, with its bureaucracy and its "targets" are not providing the help lupus patients need. Our enormous clinics (staffed by the equivalent of 2 full-time NHS paid consultants) have a waiting time for follow up of nearly one year. In my own travels, visiting units from Japan to Argentina, from Turkey to Portugal, I see our clinical care of patients falling behind.

But, on the positive side, we are making a start. We have trained scores of doctors in the lupus unit and at the last estimate 67 of my pupils have become professors of rheumatology or medicine. There are now lupus experts in most UK and European centres.

Our UK charities - LUPUS UK, the Hughes Syndrome Foundation and the St Thomas Lupus Trust contribute to patient and to doctor education and our nurses run courses and patient "hot lines". I believe there is now a greater awareness of lupus amongst the public and the medical profession.

There is certainly much more media coverage of lupus and, at a political level, there are a number of parliamentary initiatives, notably the parliamentary lupus group led by Janet Dean MP. For my own part, the improvement in awareness of lupus in the past 35 years has been gratifying.

This is my chance to express my gratitude. I thank my own team, Sandy Hampson, Angie Barwick, Denzil Fletcher, Dr Munther Khamashta and Dr David D'Cruz in particular for their vital role in the building of the Louise Coote Lupus unit.

As Life President of your charity, I would like to thank all of you at LUPUS UK - the hard working Committees, National Office team and the members throughout the country for doing so much to help in raising that awareness. I really do think that lupus is becoming less lonely.

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