Sebastian Lucas - Full Transcript

Sebastian
 LucasProfessor of Clinical Histopathology at Guy’s,  King’s and St Thomas' Hospital

Interview location: St Thomas' Hospital, London
Interview date
: 26th July, 2007

 

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SECTION 1

Picture taken in the mortuary for a 2006 RCPath competitionSA:  What kind of family did you grow up in and when did you develop an interest in medicine?

My family is totally non-medical and I have no recollection of quite why I did medicine, but there are a few clues.  One is that when I was 15 my mother gave me a copy of Grey's Anatomy – what prompted her to do so, I don't know.  I did ‘A level’ biology at school.  And when it was coming up to Oxford entrance (I was at Kings College, Wimbledon, which had a very high Oxbridge entrance rate, and they wanted to get as many people in as possible) they suggested I apply to Magdalen College.  Of which I had never heard -- couldn't even spell it!  I went for interview and my recollection is that I applied to do animal physiology and they said, “Why don't you do medicine, it gives you more choices in the end.”

SA:  And how did you feel about medicine at that stage?

SL:  Well, I had the usual qualms about going into the dissecting room, because those were the days when you really did dissect a body, with three other colleagues, from top to bottom.  But one got over that…

SA:  What was it like?  Was that the first dead body you'd ever seen?
 
SL:  Not quite.  I'd seen one before. In those days the Oxbridge entrance exam was held in the autumn before you went up, so you have virtually a year off.  And I went to work in a pathology lab; I went into the microbiology department of Mayday hospital in Croydon.  This must have been 1965… I started work as the most junior member, and my job was making agar plates – putting urine samples, faeces samples etc on to plates for microbiology culture.  I just learnt about some aspects of routine diagnostics in microbiology.  But there was one point I was asked to go down to the mortuary to collect a sample for the microbiologist, and I walked in and there was a corpse pretty well eviscerated.  I remember the brain had been uncovered and was just sitting in the cranium, it hadn't been taken out.
 
SA:  Were you quite shocked?

SL:  I was a little startled because I hadn't been warned it would be like that.  I thought I was going to collect something from an anteroom; I didn't realise I was going to go into the mortuary itself.  So I took a deep breath.  When it came to doing medicine proper at Oxford there were 60 or 70 of us in the class and we were warned "this is what it's going to be like", and we all looked at each other very nervously and walked in.  And about half an hour later we wondered what all the fuss was about – and that was it.

We had a lot of very enthusiastic trainee surgeons who, in those days, learnt their anatomy by demonstrating to medical students like us.  We did that two or three mornings a week for about a year, followed by a term of the brain stuff.  But I have to say I didn't find anatomy in the slightest bit interesting.  It was just something to get through.

SA:  So at what stage did you decide that you wanted to do pathology?

SL:  It’s such a long time ago, and I'm trying hard to remember.  Let me just say that at Oxford in those days you didn't normally do the clinical stuff because the big John Radcliffe Infirmary hadn't been built then.  So most people traditionally went to London to complete their training.  My tutor advised me that I should go to UCH (University College Hospital), where he had been.  I applied and got in.  I've been in London, apart from spells in Africa, ever since.  

That's where the pathology teaching actually happened, and it was moderately inspiring.  There was a very nice professor...  I know others will say they became pathologists because they had some sort of role model.  Well, I did have a role model, Joe Smith, who was a very nice Bristolian with a rather mock "Ambridge" accent.  He was a very good teacher and he liked me, so he took me to see things – like for example when the president of the Royal College of Physicians, Lord Rosenheim, died, I saw his autopsy.  He died of an aneurysm, which was no great surprise, but the fact that Joe had actually said, "Would you like to see this?" meant I must have made an impression somewhere.  That was one thing that steered me towards pathology.

A new puzzle every day

That's what I still like about pathology: it's problem solvingSecondly, I realised that, basically, the patients I was looking at on the wards were chronically sick and I just thought: can one face looking at chronically ill people day after day, and coming back day after day?  I wonder, is there a bit of medicine which is problem-solving, and where you can solve one case and move on to a new one?  That's pathology.  It's like doing crossword puzzles -- solving one and then having a new one to do.  And actually, 35 years later, that's what I still like about pathology: it's problem solving.  I'm good at problem solving, and I like new puzzles.  

And then the clincher would have been speaking to Joe Smith, the professor, and literally fixing up a career behind the bicycle sheds.  There were bike sheds behind the UCH medical school then, and I bumped into him there once and told him, "I think I want to do pathology when I've done my houseman year."  It would have been 1973-74, and he got out his diary and said, "Yes, I think we can fit you in.  You'll have to do the SHO (senior house officer) rotation first; then you'll come to do pure histopathology in what will be mid-1975.  Yup, I'll give you a lecturer's post then."  And that was it.  

That was the only interview I had to get me into pathology.  And it was the last interview I had until I applied for a chair in Liverpool in 1993.  They don't do it like that any more but in those days, literally, people got jobs behind the bicycle sheds.

Joe Smith's record was very good.  He had one or two trainees going through per year and most of them did very well; they're professors in various parts of the country, so he chose well.

Roles of the hospital pathologist

SA:  And apart from liking to solve problems and liking to move on from a case, what has pathology meant to you?  And how much contact do you have with patients?

SL:  Well, more than many.  Pathology is lots of different things.  At the moment there are three, not very overlapping, aspects to the work.  One is diagnostic histopathology, which is looking at biopsies and pieces of people taken out by surgeons, physicians, GPs and what-have-you.  These biopsies come in and they are evaluated and a diagnosis is made.  This surgical pathology is providing answers to tissue-bits of all sorts.  A lot of it is cancer-related and the findings will be further discussed in multi-disciplinary meetings, which include the cancer specialists, the organ specialist (I do lungs), the radiotherapists, the radiologists (because imaging diagnostics is very closely related to what we do).  In those fields you don't see much of the patients.  You see images of them -- MRI and CT scans -- but hardly ever do you put a face to them.  

Another aspect is cytopathology, which again is divided into two branches.  One is gynae cytology (cervical screening), which is totally anonymous – I mean, they have names, but not faces.  The other bit is what we call non-gynae cytology where you are looking at bits, samples which have been taken from people, and very often the pathologists do it themselves.  In this department we have a walk-in FNA (fine needle aspiration) clinic -- the superficial lumps and bumps that need aspirating to get a sample for diagnosis, our people see to those and that's very hands-on, face to face.  They know who the patients are and they might even tell them the diagnosis, because you can make rapid diagnoses that way.  A lot of people like doing that form of cytology precisely because of the patient contact.

The third main branch of histopathology is autopsy pathology, which I, particularly, do a lot of.  How much contact you have with people depends what case-mix you're looking at and how interested you are in feeding back the results to the doctors who might have asked for the autopsies, and the relatives of the dead person.  And there's a huge range there.  Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathologists are very often very involved with the relatives in terms of feeding back information and may meet them fairly often.  The pathologists may even obtain the consents for the autopsies in some cases.  When you're dealing with adults, usually the contact is much less.  And the time you're most likely to see relatives is at inquest, if the autopsy request comes from the coroner.  Or if you make contact with them deliberately.  

It's the only way pathologists are ever noticedI actually do a lot of that, partly because I go to lots of inquests, and it's an absolute golden rule -- and I make sure trainees know this -- that when an inquest is over you go and shake hands with the relatives, and you say you're sorry that X has died.  Even if they hate you because you've given them the ‘wrong’ answer, you must go over and do the PR, because it's the only way pathologists are ever noticed.

Unwelcome information

SA:  I was going to say, unless you have some sort of contact with people, no wonder they talk about samples that just disappear and results that come back as though no one is working behind the scenes.

SL:  That's right…[interrupted by the phone]  

The family wanted me to do the autopsySo, going back to contact with relatives, I always go and say hello to them after an inquest, and they usually say "Thank you for what you did", because I try and do a very good job.  Sometimes they are not so happy, but you just have to grit your teeth.  I remember one particular case of being asked to do a second autopsy on a soldier who died on exercises, and he died because he had sickle cell trait.  This is very uncommon, incredibly unfortunate, and I hope it doesn't happen again, because I think the army have learnt their lesson.  But the reason the family wanted me to do the autopsy was actually to give them information to sue the army, and I didn't do that because I didn't think it was the army's fault.

[The soldier] got an acute sickle crisis, which can happen if you have sickle trait, because of exhaustion (it was a very hot day), dehydration and so on.  I didn't think that was the army's fault, because at that time they didn't know those issues were important.  Now they do and they've rectified it.  

SA:  So this is something that can happen spontaneously is it?
 
SL:  Well, yes, homozygous sickle cell patients will of course get crises -- not exactly at the drop of a hat, but they do have them.  But with sickle trait the general belief is that it's totally benign, but that's not actually true, it's not 'very benign'.  There will be a few deaths a year because if the sickle trait person is incredibly stressed and dehydrated, they will go into sickle crisis.  I've seen about half a dozen now under various circumstances, such as soldiers on exercise (that's three of them); somebody who died in custody (a little bit of excess force from the police, perhaps); people developing diabetes.  And one was a person who went into sickle crisis through dehydration and died because he or she was a strict Moslem and it was Ramadan.

You don't win 'em all!Anyway, in that example, of the young soldier, the relatives were not very happy with me and refused to shake my hand, or if they did it was very grudgingly.  So…you don't win 'em all!

SA:  But generally now when you are doing autopsies in the hospital, what are you thinking?  Are you thinking of the relatives, the patient, or is it a scientific problem in front of you?

SL:  That's a huge question.  Who are the interested parties?  And the answer is it's a big overlapping diagram.  It depends who has requested the autopsy in the first place.  It's very unusual for the pathologist to have initiated it, so it's not us.  Who is the interested party?  Most adult and non-Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. – that is to say, children who die just before, during or soon after birth – autopsies are actually done through the coroner system,  so the first thing is to satisfy the coroner's needs, which may be minimal.  He wants to know the person wasn't murdered, and maybe no more than that.  That's not a very encouraging start to do good work. But there are cases where they want a very good job.  So, the one thing is the coroner's purpose.

Secondly, the clinicians relevant to the case – a complicated death in hospital, or a maternal death.  Those are probably the highest profile ones of all the adults I do, because dead mums are uncommon -- and are tragic, I think, in the genuine sense, because they shouldn't happen more than the inescapable minimum.

SA:  So amongst your clinical colleagues, are some of them keen to find out about the underlying pathology of their cases, and others just say, "Well, we know the immediate cause of death and that's enough for the certificate"?

My motivation is to work out what happened and whySL:  You've done your homework!  And the answer is yes.  I'm very interested… Basically my motivation in what I do with dead people is to work out what happened and why.   In other words, not just agree with the initial verdict on the immediate cause of death, but find out what's really gone on.  You can delve deeper and deeper , and obviously at some point you have to call a halt.  I'm actually very grateful to the coroners – I work for about 20 of them – who send me lots of very interesting cases, because this mortuary is quite famous for doing extraordinary things.  In a way, every case is a challenge – you think: it’s me against the truth, and can I find it?  Hopefully the answer is ‘usually’, but sometimes you are defeated and you don't know quite what's going on.  And you have to say you don't.  So I regard them as a challenge.  

I can't set a bad exampleI'm lucky in that I usually have carte blanche to do whatever I think is required to get to the bottom of a case, without very many inhibitions, financial or ethical. I don't mean ethical in the moral sense, but in the sense that 'you can't do that because it's against the human tissue act'. I get permission to do all these.  We're also a teaching department and so I do a lot of teaching, and I can't set a bad example.  What's more, I write, or at least chair, all the guideline committees on 'best practice' in autopsy work, and that's a real hostage to fortune.  I can't have anyone picking up one of my postmortem reports and saying, "Well, he doesn't do what he says!"

SA:  But with so many possibilities, how do you decide, when you get a body, what  to do and where exactly to stop?

SL:  Well, you work out what the issues are in the case – that's the crucial thing, and the one thing that I try to get the trainees to focus on.  The issues can be very short or very long; they can be very obvious or very subtle.  Every case is slightly different, although they can be grouped into broad categories.  

I do, for example, a lot of cases where people are suspected to have died from illicit drugs overdose.  This is mainly opiates – heroin – and mainly injected, but there are lots of others.  And they all do multiple drugs, so it makes it more interesting.  The issues in these cases are: can we prove or disprove that the person died directly because of illicit drug abuse, and if so how did they take it?  If it's not that, is it a natural cause of death: they happen to be a drug addict, but actually they died of cirrhosis or a heart attack or something like that and the drugs are nothing to do with it?  Or is it borderline drug addiction, drug overdose, but they had other factors that pushed them over the edge into death?  Relatives are often very interested in how the drugs were delivered or taken in, and whether there may have been third-party involvement.  I notice this more and more: they simply don't believe that young Johnnie could have done it; therefore it might or must have been someone else.

So there's that to factor in – how hard you go to prove a) that it was an injection (people use such small needles nowadays that you can't even see them sometimes, even though you know from other signs that they must have been injected); and b) that they could have done it themselves?  You provide as much evidence as possible such that an objective judgement can be made, if that's possible.

One has to factor in time versus depth of detailSo, we're talking about interested parties, and there are those kinds of cases. Then there are the sort of pathogenetic ones – rather complicated, but you really want to know what the sequence of events was that led to the death.  Because I take such a deep interest in the mechanisms of death, or mechanisms of disease, I come across things that I think previously have been rather overlooked in terms of how frequently they occur.  But one can spend too much time going into things, and in the end one has to factor in time versus depth of detail so that you end up with a caseload you can handle.

Consented autospies

SA:  But with your clinical colleagues, do you tell them you’re interested in such and such a disease, and will they alert you?

The standard of maternal death autopsies has been appalling, historicallySL:  Okay, what happens with clinical colleagues is that there are the 'consented' cases: that is, autopsies where the clinicians would like to know more, and they ask the relatives, "Can we have an autopsy?"  Although most hospital autopsy rates are really very low we do quite a lot of those, because we cover for hospitals in this part of London and the South East.  I do a lot of HIV work -- HIV is my particular thing.  We also try and get all the maternal deaths in South East England, because I and my colleague Dr Mahadeva grabbed this one and said, "We will be the maternal death centre for London, and preferably farther afield as well.  And we will do them properly.”   (The standard of maternal death autopsies, in terms of the quality of the output and the accuracy of the answers, has been appalling, historically, because they are done by forensic pathologists who don't give a damn.)

SA:  But with a maternal death, isn't it quite obvious what a woman dies of in the end?

SL:  No -- if only!  Because we have good obstetrics in this country, the overall rate of maternal death is pretty well as low as it can possibly be, so the ones that happen are going to be unusual.  Often they require rather more complicated investigations.  They're not going to be the standard things that one sees in Africa, where the maternal mortality rate is, and I quote, 100 times higher.  Appalling!  

Maternal mortality is the biggest single blot on the global health conscienceI do think maternal mortality is the biggest single blot on the global health conscience.  People go on about TB, they go on about AIDS – and I know all about these things because I've travelled the world and seen them everywhere -- but they’re not a patch on maternal mortality.  If you're born in Hampstead and you bring up a family there, your chance of dying in childbirth is one in thirty thousand. But if you grow up in Sierra Leone, Afghanistan or East Africa, your lifetime chance of dying in childbirth is one in ten.  In Sierra Leone it's one in seven.  I just think that's appalling.  Millennium Development Goal No. 8 says this should not happen.  Well, it's not going to be changed by 2015, but that's another story.  All those people are dying of obstructed labour and haemorrhage, primarily.  And also criminal abortion.  

But those things don't really happen here, or not much, and the causes of maternal death are going to be congenital heart disease (surprise, surprise); suicide, postpartum suicide (that's also been a rather upsetting surprise); sepsis coming on very acutely.  Suicide is a forensic exercise and I don't get much involved in that.  But I am involved in evaluating heart disease, evaluating 'query' sepsis, relatively rare things like amniotic fluid Embolism The obstruction of a blood vessel by a foreign substance or a blood clot., pulmonary embolism (which is rather more common), and so on.  There are a lot of rather complicated things going on, and that's where you need a good, protocol-driven process – and it works!  

I have a case coming in tomorrow, a death in a hospital in north London.   I probably won't be able to do the autopsy till Monday, but I've alerted the mortuary technologists and asked them that, when the body comes in, will they please do the sampling for the query sepsis, the blood cultures.  That stuff can't wait till Monday. The autopsy technicians downstairs are fantastic – I just have to think of something and it happens.  So when I come in on Monday those investigations which need to be done more immediately will be in train.

Speaking to relatives

SA:  And in a case like this, who is in your mind?  The husband?  The family?  Who?

SL:  Well, in that case I know full well I'll be talking to the widower in due course.  Not immediately, unless the cause of death is very obvious.  I shall wait until we have done our investigations and I am as certain as I can be about what it is, then I'll pick up the phone and speak to the widower.  If it's a death in hospital, then there might be an element of doubt: didn't the hospital do things quite as well as they should?  (You will know that a very famous big hospital in North London had its maternity unit shut for a bit recently, and then inspected.  I think that was slightly unfair.  I looked at many of those maternal deaths myself and, bar one or two they were acts of God.  In other words, you get down to the irreducible minimum and they just happen.)  If that's happening, then you're in slightly difficult water.  You can't really say anything because there may well be -- is very likely to be -- a civil claim.  Basically you just write the report as well as you can and it'll be part of the investigation, and obviously part of the inquest as well.  

But if it's like the case I'm looking to do on Monday -- which is a death at home, unexpected, and therefore it's unlikely there was any medical input that is of relevance -- I'll talk to the widower and say: I'm terribly sorry, these things happen, short straw or whatever metaphors you want to use, act of God, but in the end…

SA:  But how good are you at that?

SL:  Better than I used to be!  On the whole people are very grateful to hear directly from the pathologist; they write letters to say thank you.

SA:  When you're training young pathologists now, do you try and teach them these things?  Because there are some awful stories, for example from the AIDS world, where people have been given terrible news without any preamble.

SL:  Well…. Big subject!  How do you do it?  Contacting relatives – it's an important thing to do, but I must say it's not done out of pure philanthropy; it's done because I want something as well, so it's give and take.  Actually I'll give you an example from the other day.  This was someone who died of a congenital heart defect and that was actually quite obvious.  But I wanted to look at the tissues under the microscope in more detail. Why?  Curiosity!  Even though I'm 60 I'm still very, very curious about things, and I haven't yet seen it all.  

It's a really important driver, actually, curiosity.  It's probably the biggest driver of all.  I come into work every day early and leave later than my wife would like, because there's such an amazing amount of things to see, and much of it I've never seen before.  Generally speaking, if you go home at the end of the day having seen one or two things you've never seen before, that's a good day!

SA:  And it's intellectually very teasing and exciting is it?

You're kind of working on the edge SL:  Absolutely, yes.  You're kind of working on the edge all the time, because you're aware these things might exist, but you won't necessarily have seen them.  

SECTION 2

Perhaps I should take a little digression here, but we'll get back to this…One of the other things I do, apart from looking at 'funny' -- ie unusual, challenging -- autopsy cases, is a lot of infectious disease consultation work – people sending me slides and saying, "What is this? I think it might be this", or "I haven't the faintest idea what it is".  Every week will bring in one or two real gems. And you think, "Wow! I'm jolly lucky to be seeing all this."  And being able to say "it's that!" -- sometimes in 10 milliseconds simply because I've seen it before -- is fantastic.  Or it may be something genuinely new.  

Two days ago someone sent me a liver biopsy from the big liver hospital round the corner, saying "What on earth is this?"  I looked at it and I thought: I can't believe this!  I've never seen it before, but I know what it is.  It turned out to be someone who had had some abdominal trauma which had obviously ruptured a hydatid cyst, which is a parasitic cyst (a cyst containing embryonic worms), and bits of that had gone into the liver circulation, blocked it off and damaged the liver.  I didn't know that could happen, actually. I'd written about liver hydatid cysts in the standard textbook of liver pathology, but I'd never seen this version of it.  So it's going into the next edition of the textbook!  It was very exciting.

SA:  So you'd never seen it ruptured?

SL:  I'd seen it ruptured but I hadn't seen the little bits coming out and actually being visible inside the liver, blocking off the liver veins.  I thought: this is amazing!  So I rang up the pathologist who sent it to me and we had a nice conversation about it. I said, “You've got to publish this, but make sure I get a copy of the MRI or CT scan so I can use it for teaching!”It's the thrill of picking up a slide

Seeing those kinds of things on a regular basis keeps you going.  It's just amazing. That's the thrill of this work.  It's the thrill of picking up a slide and looking at something... not quite as grand as people looking at a new planet coming into the telescope's field, that only happens rarely to some very lucky people.  But I'm looking at things which are either versions of a disease I know about but I've never seen that version before; or genuinely really rare things; or even things that no one else has ever seen before.  I've seen a lot of versions of things that no one has ever seen before.

The case that changed his life

SA:  Tell me the most exciting first thing you've seen…

SL:  Can I come back to that a bit later, because I want to tell you about what got me into this – that is to say, what got me into infectious diseases and, incidentally, led me to where I am today.  It was more or less 31 years ago, and I was at UCH.  It's a case I use for teaching, so it's well rehearsed.  I was looking at a bowel biopsy, a rectal biopsy, late on a Friday afternoon when the rest of the department had gone home. It was the drought summer of 1976, June, and the case history said: 30 weeks pregnant, severe diarrhoea, query proctitis (inflammation of the rectum), query cause.  It was a white woman, aged about 30.  The usual diagnosis would be: nothing, or ulcerative colitis, or one of the standard diseases.  But I looked at this biopsy and it wasn't any of these.  It was inflamed, but it actually had amoebae in.  

Now I'd never seen amoebae before, but I knew what they should look like because I was vaguely interested in infectious diseases even then.  So I looked at a book and there was a picture of amoebae.   I looked down the microscope and there they were, and I said to myself: this has to be amoebic colitis; I've never seen this before, but that's clearly what it is.  So I rang up the houseman who was a friend of the surgeon who'd sent it, and I said, "This is amoebiasis."  What she answered was actually unprintable!  Because, she said, the woman was in theatre at that moment having her colon taken out because it was perforated.  And I said: "Oh…is she going to live?"  "No, she's got peritonitis and she's probably not going to live."  And she didn't.

And so, backtracking, this was a Friday afternoon and the biopsy had probably been taken on Wednesday, because processing these things takes a bit of time.  And I was thinking, God, if we'd had the answer yesterday, might her life have been saved?  Well you can conjecture till Kingdom come, I don't know.  But the point is that they thought she had ulcerative colitis and put her on steroids. That's what you do if it's ulcerative colitis or Crohn's disease.  But if you've got amoebiasis it's the worst thing you can do, because the disease just rips off, perforates the bowel and you die.  This is actually perfectly well known, but you have to think of amoebiasis first; you have to entertain the thought that that's what it might be.  And what on earth is a pregnant, 30-year-old who's never left North London doing having amoebiasis, which is a tropical disease?  

SA:  And did the amoebae not show up in the stools?

SL:  No one thought of looking for them.  This is 1976, you didn't do that then.  Protocols have changed.  If you now come in with bloody diarrhoea, the protocol will automatically include looking at the stools for parasites and what-have-you, and hopefully they'll be picked up.  And you'd consider it.  But 31 years ago life was easier in a way, you didn't necessarily think about it.  Everyone had heard of amoebiasis, but very few people had ever seen a case in this country.  Certainly I never had.  And certainly the main surgeon involved in this process had never seen a case.  One of the older physicians in the team said, "Oh I remember this from India", but he hadn't said anything at the time!  And I remember presenting the case at the next gut meeting we had, and saying, "Actually this is amoebiasis", and watching the physicians sink their heads in their hands and whisper, "Oh God".  Because this was a treatable disease.  If you want to have something, have this... as long as someone knows how to treat you.

SA:  But of course it wouldn't necessarily cross the doctors' minds with a white woman who'd never been abroad…

This actually changed my lifeSL:  Exactly.  So I did a bit of further investigation.  As I say, this is what got me into infectious diseases: this actually changed my life.  I found out -- I'm not quite sure how; it must have been from the widower – that what had happened was that his wife hadn't felt like cooking and so the neighbours cooked something for her and passed it over the fence.  Very nice of them!  This is in North West London somewhere, and they had just come in from Bombay, and so basically it was on their hands.  A goodwill gesture sadly carrying rather unfortunate consequences.  Because there is no endemic amoebiasis in that part of north London.  

Don't always believe what old experts say!And it went further, the bizarreness of this story.  In those days there was an amoebiasis research unit in the hospital for tropical diseases which was run by an extraordinary guy who I met once.  I won't say he had a handlebar moustache, but he probably did, he was one of the older, Air Force medics (there used to be a lot but they've all disappeared now).  Anyway, I rang him up, and I gave him a potted version of this story, and I said, "There's no question about the cause of death, it was amoebiasis.  As far as I can see, the infection came from the neighbours who had recently arrived from India (where amoebiasis is endemic, and they were obviously not suffering, because you can be a symptomless carrier).  They must have given the lady the amoeba in the food they'd cooked for her."  And I'll never forget what he said. "This doesn't happen in the United Kingdom," he retorted and put the phone down!  So the second message of the story – and this is what I tell all the medical students, partly because it's interesting – is: "Don't always believe what old experts say!"

“Learn your worms!”

SA:  You were saying this was the turning point – what did you find especially fascinating about infectious diseases?

Pathology is kind of squeezed outSL:  One of the things some pathologists did was not just to do the pathology training, but to get a clinical exam, Membership of the Royal College of Physicians (MRCP), as well.  This is what I did in 1975 – that was a year before this event.  Why?  Partly because it made you learn more medicine -- a good basis.  People who want to be pathology trainees who've done clinical medicine are doubly welcome, because they know more. The medical student training is hopeless now, because pathology is kind of squeezed out.  

Anyway, I did my MRCP, and I remember when we started in UCH we had an MRCPath training course run by a very enthusiastic local registrar called Sherwood Burge.  He was a very large guy, very dominant, a bit of a bully but in the best sense: he made people do things.  And the first thing he said to this group of rather smaller people -- I was one of three or four wanting to do our membership -- was:  "Infections?  Learn your worms!"  So I went and got a book, and I learnt the life-cycles of all the worms and all the parasites.  

Actually I spoke to him many years later and I said, "Sherwood, you know you kicked off a career that way," and he said, "I was only joking"!  But actually in the MRCPath part I, worm life-cycles predictably came up.  There were always one or two questions, and I learnt it for that.  And I thought: these are interesting, I wonder what happens?  So, I've never forgotten a life-cycle.  It bores the pants off the trainees, I can tell you!  Like the case of the liver biopsy I was telling you about – I showed it to them this morning, and I said, "Tell me the life-cycle of hydatid cyst."  None of them knew it… And I said, "Learn your bloody worms!"

SECTION 3

The first signs of AIDS

SA:  So that's now your saying!  Tell me about AIDS – how did you get involved and what was the first case you saw?

I didn't pick up on it at the very beginningSL:  To my slight shame, I didn't pick up on it at the very beginning.  It started nominally in 1981 when, in America, gay men started presenting with diseases no one had ever seen with any frequency before.  Or never seen at all before.  That is Kaposi's sarcoma and pneumocystis pneumonia. This happened in New York and San Francisco virtually simultaneously.  And it was published in two back-to-back editions of the Mortality and Morbidity Weekly Report put out by the Centers for Disease Control (CDC) in July 1981.  July 7th and 14th 1981 are big days in the AIDS calendar.  That's when Jim Curran, who was head of something in the CDC said, "I think we have a problem."  Five cases.  He became the great man driving the beginning of the response to AIDS.  Now this is all in retrospect.  I didn't pick up on that at all.

1982, I was here in St Thomas' as a research fellow working on infections with a charismatic pathologist Michael Hutt, of whom I will speak anon (‘cos he was the other important person in my professional life).  We had a frozen section from a patient who had a lung problem, and no one knew what it was.  Peri-operative diagnoses are done when surgeons want to know the answer now so they can decide what procedure to do.  Is it cancer?  Do we chop out the rest of the lung?  Is there something else? They're sitting there waiting for answers, and it usually takes about five or 10 minutes.  The patient was called Terrence Higgins… [I obviously look askance!] Yes, him!… Quite! [Terrence Higgins was among the first people known to die of an AIDS-related illness in UK, and a Trust was subsequently set up in his memory dedicated to raising awareness and preventing the spread of HIV.]

SA:  Goodness, and he was under the knife?

SL:  He was under the knife.  Again in retrospect, this is not how you'd diagnose it, but anyway that's what was happening.  Maybe they thought he had cancer, I don't know.  We looked at this [frozen section] and we just did not know what it was.  We asked Michael Hutt, who was the professor of geographical pathology here, to come and have a look – and I don't think he knew what it was either!  But we knew it wasn't cancer so they closed him up, no more procedures were done.  

We looked it up and we realised it was pneumocystis pneumonia.  It was the first case most of us had ever seen.

SA:  So pneumocystis pneumonia was really that rare, was it, before AIDS came along?

AIDS hadn't been officially labelled as such at that point. He was treated like the proverbial leperSL:  Well you know I'm trying to think, because I knew about PCP for other reasons. I'd actually done an experimental project on it in Kenya before 1982, and I knew what it was. So it might have been me who suggested it was PCP, but actually I can't remember.  Anyway, between us we got the answer.  PCP it was, and at that point the penny dropped that this is what we were then calling GRIDS – Gay Related Immune Deficiency Syndrome.  AIDS hadn't been officially labelled as such at that point.  And I remember that patient, Terrence Higgins, was looked after in a ward more or less to himself.  He was treated like the proverbial leper.  That's one of the reasons why the Terrence Higgins Trust was set up, to say that people really shouldn't be treated like this – and quite right.

SA:  So did you ever go and see him?

SL:  No, but I saw him when he was dead because we autopsied him.  He died of PCP and cerebral toxoplasmosis – a parasitic infection.  I still use the tissue slides of that case in my teaching set.  And when I give my standard AIDS talk I'm pretty sure that one of the Histologythe study of cells and tissues, usually carried out with the aid of a microscope. slides is of Terrence Higgins' brain.

SA:  So at that stage, as you say, when people were still treating those with AIDS like lepers and pushing their food in through the door, and that sort of thing – even the medical staff – how did you approach an autopsy?

SL:  Rather indifferently, because… Well I didn't do the actual autopsy of Terrence Higgins, I watched it, so that wasn't my immediate problem.  But I remember we had a case conference about him in the grand round.  It was a whole hour devoted to GRIDS, and it was just someone reiterating what we knew so far. The total number of cases back in mid-1982 was not that large globally.  We didn't know about Africa: it "hadn't happened" yet, if you remember, that was two or three years later.  And so one was dealing with the British experience, which was either one case or none, so to speak!  Terrence Higgins was certainly the first big case here.  America had maybe 100 or 200 by that time, but that was all. So the case conference was a summary of that really.

I left St Thomas’ shortly after that to go to UCH, so I wasn't part of what happened here.  But gradually the name changed to Acquired Immune Deficiency Syndrome, or AIDS, and then a group of people vaguely interested in AIDS grew up at St Thomas’ which would have included the haemophiliac doctors.  I do remember them saying, "Our kids have nothing to do with those nasty men with AIDS, we should keep them separate".  Anyway, I forgot about it. That's the relevant point.  Terrence Higgins was just another fascinating case. 

Diagnosis by post: taking on the Africa consultancy

Autopsy team outside headquarters of the AIDs project, Abidjan, IvoryCoastI was at UCH from 1983 essentially until 1995.  So I was there for 12 years, minus a year in Côte d’Ivoire in 1991/2.  What I did at UCH was a lot more infectious disease work, because I had seen a lot in Kenya.  I got interested in AIDS not through anything going on at UCH; not through the hospital of tropical diseases, which certainly had one or two HIV positive African patients going through, although they didn't know it then (this is all retrospective), but actually because of Michael Hutt.  I'll describe him in more detail shortly, but he retired in early1983 and he gave me his practice, which was looking after diagnostic histopathology for mission hospitals abroad, particularly in Africa.  I simply took en bloc that work, which he'd been doing from St Thomas’ -- I took it over and built it up.  It was partly cancer, partly TB, partly infectious diseases, partly just general stuff.

SA:  How did you do it?  Did you have to go out visiting these hospitals?

SL:  No, no.  The specimens would come in by post.  Surgeons in mission hospitals all over the place – but particularly Uganda, Kenya, Zaire as it was then, Rwanda, all central Africa, Tanzania, and Sierra Leone, just lots of places – would send in these specimens.  They'd do operations, put their specimen in formalin, let it fix, then pack it up, usually in the used ends of surgical gloves which are very good containers, water-tight, tie off the ends with a piece of cotton or simply tie a knot in it like a balloon, put it in an envelope.  Post office didn't give a damn; they didn't leak very often!

SA:  Did the post office even know what it was?  

SL:  Probably not.  It was just ordinary post.  There's no problem, it's all been fixed, and nothing escapes formalin.  Even now the only thing that does escape is CJD (Creutzfeldt-Jakob disease).  Everything else is killed by formalin.  So there's no infection risk.  Of course, formalin isn't very nice stuff; you don't want to get it in your eyes, but if a little spills it's not the end of the world.  

I saw loads of things I had never seen beforeAnyway, we'd look at the specimens, write our reports and then send them back by airmail.  Nowadays of course it's done by email.  I built that up because it was seen to be a useful thing to do.  And it was great fun:  I saw loads of things I had never seen before; things that don't happen in Britain; wonderful parasites that simply don't happen anywhere else.

SA:  But how could you identify them?  Where did you learn?  

You learn by having a prepared mindSL:  I have about a dozen maxims, of which you have heard two or three so far.  One is about curiosity.  Another is that you learn by having a prepared mind.  In other words, you do need to read up a bit about what might happen; you can't know it all.  And thirdly, you have to face the fact that usually the first time you see something really big and different you'll get it wrong. You'll correct yourself by one means or another – usually by internal reflection, thinking, “Oh my God”, or possibly by showing it to someone else.  But at that stage of the game there wasn't usually anyone else I could show anything to who would know what it was, so I was on my own.  So, you get it wrong the first time and you get it right the next time.  That's how you learn medicine!

SA:  But where do you even start to find out?

SL:  Well there are big text books which will narrow it down.  And there are a few experts you can post it to.  I have built up a network of friends around the world -- in America, in France at the Institute Pasteur, the AFIP (Armed Forces Institute of Pathology) in Washington, the Centers for Disease Control in Atlanta, and other places -- people who are interested in what might be called the cutting edge of rare bugs.  So if I'm really stuck I ask them.  But I'm not very often stuck, to be honest!

SA:  So how often do these things come in?
 
SL:  Well what happened was that when I was at UCH I didn't actually have very much to do – life seemed to be very easy in those days!   So I wrote text book chapters, I did all this overseas diagnostic work.  At one point, the professor, who was my great friend and supporter, did say, "Look, the overseas stuff coming in from Africa is now about a quarter of our workload.  If the managers got to hear of it they'd have a fit!  So just control it…"

Then on top of that came leprosy.  From 1983 onwards I was the consultant pathologist for the hospital of tropical diseases – a post previously held by Dennis Ridley, who was a very great leprosy pathologist, and a very good leishmaniasis pathologist, but didn't know much else really.  Anyway, I took over from him, and I thought: leprosy is interesting…Good stuff!  

Then, again quite by chance, two things happened.  One was that a very nice microbiologist who oscillated between the Aga Khan University in Karachi and the London School of Hygiene and Tropical Medicine where she was doing her PhD, put her head round the door and said, "Would you like to do the diagnostic histopathology for the Marie Adelaide Leprosy Centre in Karachi?"  To which I must have said: why not?

They eliminated leprosyAnd at roughly the same time, the pathologist who had done all the leprosy diagnostic work for the LEPRA project in Malawi, a guy called Colin MacDougal, retired, and someone had to take that work on.  Karonga, which is the northern province of Malawi, had a LEPRA-run programme, mega funds went into this and it was brilliant.  It did its time and it's now finished, for two reasons.  One is that they've done all their research, and the second is that they eliminated leprosy – the project was rather more effective than they intended!  

Anyway, this was run by LEPRA through an amazing epidemiologist called Paul Fine, a professor at LSHTM who's now technically retired though he's really "un-retirable".  The project was to look into the epidemiology, transmission, treatment -- everything, but mainly the epidemiology -- of leprosy.  Why choose northern Malawi?  Because a) there was a lot of leprosy there; b) the government wanted them to do it, which is a very important factor; c) the project was isolated.  This was a vast area hemmed in by the lake on one side and the mountains on the other two sides, and there were no roads into it.  Brilliant!  

There was a population of about 150,000, and the project literally examined them all, every square inch of them within the bounds of modesty and ethics, every five years.  So any one who had a skin lesion, it was put into a pot and sent to England.  There was a large amount of stuff coming in, and in the end it all came to me.  I now have the entire archive sitting here.  It had to be sorted: is it leprosy?  If it is, what sort is it?  If it's not leprosy, what is it?  All sorts of wonderful work was done over the years.  I wrote a few papers with Paul on this.  Anyway, the project was so good that we actually eradicated leprosy.

A new road brought HIV infection with it.But there were two confounding factors.  One was that because of the Mozambican civil war, people started drifting into Malawi.  They came across the lake, so increasingly more and more of the leprosy was actually imported rather than endemic.  And though that was interesting, that's not what the project people were there to do.  They were interested in the endemic transmission patterns.  A huge amount of work was done on this, and some very famous papers came out of it.  And some major lessons too, including big things like: if you want to reduce endemic leprosy, BCG vaccinate everyone.  It may not work against TB, but it sure does work against leprosy.  That was news.  And so simple.  And actually in retrospect so obvious. The other confounding factor for the project is that the EC financed a new road into the Karonga area, which brought HIV infection with it.

Anyway, I was doing all that stuff, and combined with the mission work, at one point I was spending all my time looking at leprosy biopsies and overseas diagnostic work, and only a little bit of the UCH pathology – which was totally uninteresting!  I was having a high old time actually.

Into Africa

SA:  So sitting here looking at all this stuff coming from Africa, when did you decide: I must go off and see for myself?

SL:  I'll tell you exactly what happened.  One of the series of materials we were getting from overseas came from the Uganda Makerere School of Medicine in Kampala, the best medical school in East Africa then, as now really.  Again, Michael Hutt had been the professor of pathology there.  I hadn't actually been there; when I got sent to Kenya in 1980 it was because I couldn't go to Kampala: there was a civil war going on, Obote was being chucked out and it was all very difficult.  Kenya was the next best thing.  I hadn't at that point visited Uganda at all.  And what happened was the following:  

It was AIDS with wastingAmong the stuff coming in to us from overseas was a whole set of intestinal biopsies taken from people in Mulago Hospital, Makerere School of Medicine, Kampala, under the auspices of two very active and dedicated clinicians.  One was Nelson Sewankambo, a great Ugandan friend who is now the Dean of Medicine there.  And the other one was Rick Goodgame, an American Baptist missionary doctor, who was an enthusiast the like of which I have never seen again.  They sent me all these bowel biopsies from people with ‘Slim’ disease. Slim was the name given to a condition being seen in the early 1980s, and which is now what we call AIDS – it was AIDS with wasting.  But then of course, we didn't have the virus – that wasn't known about till 1983, and not really till 1984.

SECTION 4

Slim Disease

This condition had started in the south west of Uganda, and had moved up country.  Patients had wasting, and they had terrible diarrhoea – ghastly diarrhoea, like cholera – and they wanted to know why.  So these doctors started doing biopsies.  Well the local path lab couldn't cope – not only with the numbers but they didn't have the quality to be able to do that.  So they sent them to me because we did overseas work and I was a friend of Uganda "by proxy".  

There were some very strange things going onIt became obvious that there were some very strange things going on.  One of them was a huge amount of an infection called cryptosporidiosis, a gut parasite which you don't see so much of now, but it was big then.  It became fairly evident that, in the Uganda context, Slim Disease was gut cryptosporidiosis.  We had a series of about 25-35 cases, but that was a big series at the time so we wrote up our findings in a paper with the title, “Ugandan AIDS, wasting disease, is cryptosporidiosis” – something like that.  And it was the first article published in a new journal that was just coming out called AIDS.  We were very pleased with that.  Volume one, page one was us!  Goodgame, Sewankambo, and my name tucked on the end. I actually wrote it, and that got me into the AIDS scene.

First international conference on AIDS in Africa

Then as that was brewing up, two things happened.  One was that the first international conference on AIDS in Africa was held, organised by another remarkable clinician called Nathan Clumeck, a Belgian, who was working in Rwanda, in Kigali, where AIDS was big.  At that time, 1983/84, the first accounts of AIDS in Africa being an issue came out from the Projet SIDA, which was a CDC-NIH (Centers for Disease Control-National Institutes of Health) project based in Kinshasa and run by great people like Jonathan Mann [who died in an air crash in 1998], Peter Piot from Antwerp School of Medicine [subsequently head of UNAIDS], Marie Laga from Antwerp, and Anne Nelson from AFIP, a very distinguished pathologist and my best American pathology friend from the AFIP in Washington,  Robert Ryder… All these names!  All history now.  They all made their names, as I did too, on the back of this.  

They were in Kinshasa in 1983 and they published a big paper in the New England Journal of Medicine which said: “There is AIDS in Africa, and it's the same disease as in America, same process, it just looks different.”  Obviously the question “where did HIV come from?” was hotting up at that point.  But in many ways that was irrelevant: it came from Africa, we all knew that, and there was no argument really.

SA:  And did people accept that this was the same disease…?

SL:  Well let me come to the first African conference, because it was very funny… At the same time as the paper came out of Projet SIDA, Nathan Clumeck published a very similar paper which said: “It's in Kigali as well, it's the same thing, and we're seeing it in Burundi etc etc.”  So gradually these reports were coming in, and Nathan organised a conference in Brussels in November 1985.  There were about 100 people there -- about 95 of them white and 5 black -- and there were presentations using very, very dicey serology.  

The virus was called HTLV-III (human T-lymphocyte virus no. III) for a start, it wasn't called HIV yet.  There were presentations saying everyone's got it, which was actually just bad serology, and we knew that but we couldn't quite prove it.  Malaria infection, for instance, made the serum test positive for the AIDS virus.  There were presentations with some very strange skewed stuff that talked about Burkitt's lymphoma, Kaposi's sarcoma and so on.  Then in the end there were two press conferences held.  One organised by Nathan which said there was a big problem of AIDS in Africa, and one organised by a few black African physicians which said there isn't a problem!

Anyway, that was a two-day conference, and I enjoyed it immensely.  And I met several important people, including Kevin de Cock, who is the most important AIDS physician around now and is my best medical friend, really.  I'd met him before, in Kenya, and after the Brussels conference we went to his family moated castle in Aalst, where we stayed overnight before coming back to London, where we wrote a document for the Dean of the London School of Hygiene saying that the School should get into AIDS in Africa because AIDS is going to be very, very big.  In fact it is much bigger than we ever thought it was going to be.

AIDS is ravaging this countryKevin then went off back to CDC in Atlanta and we remained in touch because many things happened.  I got more interested in AIDS because of the gut stuff from Kampala and the Conference in Brussels.  And then I got a phone call – actually it was probably an aerogram in those days! – from an extraordinary surgeon working in Kampala called Wilson Carswell, who said, "Come out.  We know you looked through all this gut stuff and we've got to document it properly – AIDS is ravaging this country, it's dreadful; come and see the hospital, you won't believe it."  

Every bed was occupied by a dying skeletonHe said, "Come and stay with me for a fortnight, get the British Council to pay your airfare", which they did. Wilson met me; he took me home for a shower and then took me to the hospital and just said, “Look.”   He took me round the medical wards for adult males and females and I have never seen anything like it.  These are enormous wards in the Florence Nightingale sense, and every bed was occupied by a dying skeleton.   Wilson said, "It wasn't like this 10 years ago.  Something's happened, and you are going to tell us what it is."  I said, “Well it's AIDS."  And he said, "I know that, but what have they got that is making them like this?  We know some of them have got cryptosporidium, but what else?"  And I said, "Well how about TB?"

SA:  When you saw those wards, what was your reaction?

It flicked a switchSL:  I was just staggered.  And again, it flicked a switch: this is interesting, this is worth doing, this is a disaster – I've never seen anything like this.

SA:  And did you get out into the villages and see what was happening there?

SL:  Oh yes.  I was so lucky. I mean, you'll talk to other pathologists, the next generation on from mine, they can't tell you stories like this because the trainee requirements don't actually make it possible.  Though I have to say, all this was done when I was already a young consultant.  I was very fortunate, I'd got to the point where I was independent and I was also already useful.  The message I give to my trainees when they ask, “How do you go abroad?” is that it's much more difficult today than it was then because I was paid to go abroad.  Nowadays you have to fight, or try to get a year off the training schemes -- terrible things to do bureaucratically.  But the point is you are more useful when you've got the qualification, the MCRPath exam.  You know more by then.  Although I have to say, your first senior post is when you really start learning.  Up till then it's just games.

Anyway, I went out to Uganda and I was amazed.  No, I didn't go round a lot of villages at first.  I looked at patients; I spoke to the pathologist there who I got to know and we're still friends.  (Uganda: wonderful place -- fantastic climate, brilliant diseases, lovely people, clever people, what else could you want?)

The link between TB and HIV    

Anyway, I went to the mortuary and did a few cases myself.  I took photographs which I still use, did some teaching, gave some lectures, grabbed quite a lot of material which I then wrote up with a local pathologist – "this is what AIDS is" – because in Africa it wasn't documented at all.  All the documentation was clinical and microbiological, there was no tissue pathology, no: "this is what it is", and we began to have the feeling that actually, an awful lot of what we think is HIV-related disease may well be tuberculosis -- made worse by HIV.  Which subsequently turned out to be entirely true.

SA:  When did you have that hunch?

SL:  1986, when I just saw so much TB that I thought: hang on, TB and AIDS is bad news…

SA:   When you saw all those emaciated people in the wards, had they been diagnosed with TB?

Hot work in the morgue, Abidjan, IvoryCoastSL:  No they hadn't, but I'll come to that in a moment.  It was a concept that gradually built up and finally became completely solid in 1991.  But that's five years later.  It's actually very interesting reliving all this stuff – I must tell my grandchildren!  The younger doctors say, "How can you do these things?" And the answer is, "Well you could then!"

So, I grabbed material – with consent – and brought it back.  On my last day in Kampala the British Council gave me a Landrover.  I should tell you, January, February 1986, Kampala... not a good time to be there, a lot had happened.  Museveni had only just conquered the capital, and was moving north to try to get rid of the rebels from Gulu and beyond… Anyway, I had a Landrover because getting round Kampala was bloody difficult – pot holes, shell holes and what-have-you.  

Nelson Sewankambo and his great buddy David Serwadda – another Ugandan public health physician who's become very famous in AIDS – said, "We should do a quick study.  Is HTLV-III (because it was still not HIV, it was just 'the virus') transmitted horizontally?"  In other words, if you live in the same household as someone with the virus, but don't sleep with them, do you get it?

Collecting samples in the field

"How can we answer this?  What we need is a lot of blood samples very quick.  Where shall we go?  Let's go down to Masaka, in Rakai District", where actually this nominally started.  Nelson said, "I know the District Medical Officer of Health; I will call him and ask which are the worst affected villages round here and do we have his consent to go and bleed everyone and bring the samples back and analyse them."  The DMO said, "Yes, go ahead."  

So we drove down there in the Landrover at dawn, found the DMO.  I was rather staggered there was one.  After all, civil war had passed through this district only about three weeks previously.  But there was an office with DMO written above the door, and he was there.  He had a map, and he said, "Go to these villages here."  So we went with our bundles of syringes and needles.  We found the village headman and asked, "Do you approve?"  (This is what consent was in those days!)  

We bled about 100 people in two or three villages.  Wearing gloves wasn't on, it was hot and sweaty and we got rid of the gloves quite quickly.  I took just lots and lots of blood samples, and there's a picture of me bleeding a child plonked up on the bonnet of the landrover – and I'm wearing a tie.  I think: why am I wearing a tie?  The answer is that, when I asked Wilson Carswell, "What's the dress code in Uganda?" he said "I've been here since 1966; I've worn a tie every day"!  So I thought, okay I will too.

Anyway, at the end of a long day we came back with lots and lots of little vials of blood, all labelled and with a code of who was who and so on.  My task was to get this blood to England, and get it to the public health laboratory in Porton Down, and in particular to Bob Downing or Graham Lloyd, two more famous names in HIV virology, who would do the analysis.

Two extraordinary weeks that changed my lifeThe next day I left Kampala after two extraordinary weeks that changed my life.  I had my luggage and a camera, and I had a thermos flask packed with ice and containing 100 vials.  In my suitcase I had loads and loads of tissue blocks of AIDS pathology and some glass slides to work on.  And I kept thinking as I went through Entebbe airport departures, and then customs, and disembarked in Nairobi where I spent the day with friends (I asked to put my thermos in their fridge and just told them to make sure their daughter didn't open it), and then Paris where I got out again and changed planes, through to Heathrow... I thought: if someone asks me what's in this flask, what am I going to say?  But I'll never know because no one ever asked!  A different world now, isn't it?

When I got home, I was taking a shower when someone phoned from Porton Down and said to my wife, "I understand your husband is home and he has some important material for us." It was quite obvious that the person there didn't want to tell my wife what they thought it was.  But she sensed this, and said, "Don't be silly; I know perfectly well these are blood samples of AIDS patients – just come and get them."   A relieved courier turned up on a motor bike and they got taken away.  Anyway, it became quite a notable paper: HTLV-III is not transmitted horizontally.

As I say, we were also wondering about TB.  While I was still in Uganda I thought, “HIV makes TB worse in many contexts, but how can we prove this?  I wonder if the pathology looks different?”  We obtained tuberculous lymph node biopsies from patients with AIDS, analysed them, published our findings and it was the first description of tuberculosis pathology being very different from standard TB when you've got HIV disease.  Now this was not exactly unprecedented, or unexpected, but it hadn't been documented before.  I called it anergic non-reactive TB. It had been documented in leukaemics in the 1950s, and old people.

SA: …in people with compromised immune systems?

The TB bacterial loads in these people were just colossalSL:  That's right, compromised for other reasons.  It's no different with HIV, but it hadn't been documented before.  The TB bacterial loads in these people were just colossal.  If you did the stain for tubercle bacilli, which we call a Ziehl-Neelsen test, the bacilli come out red.  You didn't need to look under the microscope, if you just held it up to the light the whole slide looked red!  Phenomenal densities which I didn't really see again until five or six years later when I was doing another study.

SA:  And did this change the whole field of management of AIDS patients?

SL:  No, that whole business came a bit later.  The sheer overwhelming importance of tuberculosis didn't really sink in until the early 1990s – you're talking about another half decade -- and that happened in part, I like to think, from work we did in Côte d’Ivoire.  

SA:  Okay, but before we talk about Côte d’Ivoire, I want to ask a bit more about Uganda.  When you went into the villages of Rakai how visible was AIDS at that stage?

There was no treatment for HIV SL:  We went into huts and we found people dying, skeletons dying there.  It was very evident there was a problem.  You know, concepts like decimation came to mind, and that actually was what it was.  Such an appalling thing.  And of course there was no treatment.  Not only did you know there was no treatment for HIV itself, but since we didn't really know what opportunistic diseases the people had, you couldn't treat them either.  Even the concept of anti-pneumocystis prophylaxis hadn't been considered because we didn't yet know how important it was.  And anti-TB prophylaxis wasn't being mooted then either.

1986 was an extraordinary year because I went to Uganda and then I got invited by the British Council to do more or less the same thing in Zambia, and I went to Lusaka for a bit.  It wasn't nearly so useful because the Zambians weren't geared up to use me properly.  All I could really do was chat to my pathology friends, and get arrested by the police which wasn't so nice.  I nearly got sent to prison merely for photographing some railway engines.  My son was a railway anorak and he asked me to photograph trains, and of course the Zambian police assumed I was a South African spy!

But the useful thing was that I did meet Anne Bailey, another great name in the AIDS canon because she's the person who described atypical Kaposi's sarcoma.  I knew her actually from 1980 when I was working in Kenya, because I once went to a meeting of the association of surgeons of East Africa and she gave a paper essentially saying: "Kaposi's sarcoma is looking very odd nowadays, and this is what I've seen in Lusaka.  I don't know why this is happening."  What she was actually describing was the effect of HIV on Kaposi's sarcoma.  That all became evident later.

So when I visited Lusaka I had long chats with her about that, because by then, 1986, it was obvious what was going on.  And again, extraordinary photographs, many of which are still used.

SECTION 5

Studying AIDS in Côte d’Ivoire

SA:    Okay, Côte d’Ivoire…

I thought: I need to do something usefulSL:  Anyway, then nothing much happened.  I did a few more trips.  I went to AIDS conferences.  But then to be honest I began to think: what am I going to do?  UCH is a bit boring.  I was doing all the leprosy work and that was quite fun, but once you've mastered that it's kind of coasting.  And I thought: I need to do something useful, important.  Joe Smith taught me that you went into pathology to become a professor.  Of course in retrospect this is totally untrue.  Most people don't, and most people don't even think of it.  But that was the sort of ethic I was brought up in, and I thought:  I need to do something significant, and I'm not going to do it here.  

By chance Kevin de Cock, who then had moved into AIDS proper, started setting up a project in West Africa.  Why?  He was working for CDC and he was asked by them to look into HIV-2, which had just become evident.  He'd done some work on HIV already, looking into the epidemiology, so this wasn't a new idea.  CDC essentially didn't want to be caught with its pants down a second time, because they had kind of misfired with working out what HIV-1 was.  As it's described in [the 1987 book by San Francisco Chronicle journalist Randy Shilts] And the Band Played On, CDC didn't do very well.  But no one did very well – Heavens, this was a new disease!  How on earth could you do things well the first time round?  It's like getting diagnosis right the first time round.  You don't; you get it right the next time.  

So the CDC said, "We need an HIV-2 project, Dr de Cock, go and find the place to do it."  So he travelled to Abidjan, Côte d’Ivoire, Ouagadougo in Burkina Faso, and to Guinea Conakry, and it became evident that the only place you could possibly do any work was Abidjan, because the communications in the other places didn't work.  And there was a big American Embassy in Abidjan, so the Projet Retro CI, which stood for the Retoviral Project, Côte d’Ivoire -- a collaboration between the CDC and the Ministry of Health of Côte d’Ivoire (and it really was a collaboration) -- was set up with vast amounts of American money.  

A new building went up in the grounds of the huge hospital which became my home for a year.  Kevin set up his unit there and they started doing basic HIV work, with HIV-2 as the added interest, and within one year they'd produced a paper in the Lancet saying: it's here too.  At levels which are less than other places, but it's here; and a small proportion of it is HIV-2.  It became evident that HIV-2 was not going to be a major problem, so the main focus became HIV in general – epidemiology and clinical stuff.  

Sometime around 1989 Kevin passed through London on the way back from Montreal, which was where the International AIDS Conference was that year. I remember having lunch in our garden, and he said, "Come out to Côte d’Ivoire; come and see what we're doing and see if it interests you."  So I went out for two weeks in early 1990, and stayed with him.  I was appalled by the climate, which was ghastly – 100 percent humidity, 100 degrees F all the time except in August; things I'd never really experienced before – and I was rather staggered by the amount of work going on.  A wonderful lab, most of the scientists there were Ivorian.  They'd basically creamed off the best of the medical and paramedical Ivorians they could to work there, paid them salaries which were somewhere between Ivorian and American, and had a very good infrastructure.  Computers the like of which I'd never seen before.  Email was just about to start.  

I met a lot of doctors. I met the local senior pathologist who was very nice.  I looked at the mortuary, and thought: God almighty, what a ghastly place!  There was a very nice French pathologist called Anne Beaumel whose salary was being paid by the French government. They all said to me, “Come and work here”, and I said, “No, no, no!”  

Every person over a period of three months had been autopsiedBut then Kevin said, “Would you like to finish off a project for us?”  He gave me a pad of paper and a whole lot of tissue blocks and slides and I worked through them.  They turned out to be a set of autopsies and as I worked through them I found that they were 50:50 HIV-positive and HIV-negative people.  The HIV-positive people had TB and a bit of pneumocystis, and the HIV-negative people had boring things like lung cancer and the like.  I thought: this is very odd; what is this?  And when I looked more closely I saw they were in fact consecutive deaths – every person over a period of say three months had been autopsied.  I thought: blimey, you can't do that in England!  This is interesting.  I said to Kevin, “How on earth did you get consecutive deaths autopsied?”  And he said, "Ivorian Law, Napoleonic Code, it's French.  Anyone who dies in a teaching hospital in Côte d’Ivoire can be autopsied without consent required."  I said, "Kevin, I'm coming back!"  And he said, "I knew you'd say that.  That's why I got you out here."

And basically the rest of 1990 was frantic… I went to see the UCH head of department Peter Isaacson and said, "I'm thinking of doing a project abroad, a big HIV mortality study to describe the diseases in Africans with HIV. We will look at hundreds and hundreds of adults and kids -- and I mean hundreds and hundreds -- and do it properly".   Peter said, "I can't stop you".  So all I had to do was find the funds to get there and to do my work, because it was going to cost a lot of money.  
 
It would never pass muster now -- ethically, no one would even contemplate doing this nowI still have nightmares just thinking about 1990 and the panic to get things going.  We got a project that seemed to be okay.  It would never pass muster now -- ethically, no one would even contemplate doing this now -- but it passed then.  We would march in to… not a strange place, because it was on the back of the project which was run in collaboration with the Côte d’Ivoire Ministry of Health.  When people accuse me of being bad – which they do very occasionally – I say, "They wanted it. The MoH supported this to the hilt, and more!  And that's what was done then."  

We drew up a project basically to autopsy a representative selection of as many people, including children, with HIV, and some HIV-negative controls, as we could in a year.  We postulated that we could do 500 in a year, and we actually got to 496, which is pretty good.  God, it was hard work!

This actually mattered, because you could treat these thingsWe wrote a project proposal saying this is what we were going to do, and these are the benefits: knowledge -- you know, hypothesis: it's all TB, it's not TB; there's a lot of pneumocystis, there's no pneumocystis... This actually mattered, because you could treat these things, you could give prophylaxis for them.  We would be able to state that in a place that doesn't have regular diagnostic tissue pathology you will be able to manage empirically what's going on by looking at the scenario.  And that's exactly what we did.  I mean, it really worked, and it was terrific.  Best year of my life!  I went without the family.  The kids were doing O levels and A levels, so and I went there by myself, essentially for a year, and just worked flat out.

Public health benefits versus personal objection

SA:  Looking back on the project now you probably feel, “Oh my God, how did we get away with that sort of thing?”  But do you think it's right that there has been the Alder Hey effect, where everybody started asking questions about the ethics of pathology practice?

The public health benefits are colossalSL:  Up to a point.  And the "up-to-a point" is because when it's done well and properly, the public health benefits are so colossal that in my personal opinion they override to some extent personal objections.  I'd be quoted saying that in public quite happily, but it doesn't look good.  But it's true.  And one of the problems we've had recently is that the public health benefits of what was going on – essentially to no one's great detriment or hurt (and remember, all these people are dead, we never killed anyone, that has been forgotten) – the public health benefits are colossal. I worked in Côte d’Ivoire only for a year.  I ‘embedded’ myself there; no Ivorian would say Lucas did a bad thing.  Honestly.

We got the money, that's the point, and I tell you, it was a close-run thing.  It got to September -- I really wanted to start on January 1st if it was going to work at all -- and there were still lots of things to do, like buying equipment and getting the stuff out there.  I knew I'd have to have a complete laboratory which was mine only (we donated it to the local path lab at the end).  I couldn't use the local lab; it was just not up to speed.  Eventually I took out a technician, who has become very distinguished.  It did him a lot of good, getting this under his belt.  He and his assistants, who we recruited locally, were actually producing slides at the rate of 10,000 a year. That's five times what the people in the lab here do.  I mean that's real work!  And brilliant stuff.  They still photograph all those slides.  

SA: So where is the archive?

SL:  In the basement downstairs here.  That's the archive of African AIDS – the first samples.

“Africa was completely different”

SA:  What manifestations of AIDS did you find in Africa that were so different from in the West?  Did you already know what was going on in America and the rest of the western world by then?

All the patients I was looking at were gay white middle-class men. That's what AIDS was in London thenSL:  I was doing a lot of HIV work.  I'm actually a bit unfair to UCH: they gave me huge licence; they rebuilt a mortuary dedicated to HIV for me at the back of St Pancras hospital, and we did loads of consented cases, and I suppose a few coronial ones – they all seemed to be the same then.  About three or four autopsies a week, and I just did AIDS.  We did CPCs (ClinicopathologicalPertaining to both the signs and symptoms of a disease (the clinical picture), and the nature, causes and consequences of the disease (the pathology). conferences) and I taught all the local clinicians about AIDS, but it was all very different from Africa.  You must remember that at that time all the patients I was looking at were gay white middle-class men.  That's what AIDS was in London then; Africa was completely different.

The first thing that hit us in the face was: actually, it's all TBThe first thing that hit us in the face [in Côte d’Ivoire] was: actually, it's all TB.  More than half of all the cadavers I looked at had tuberculosis.  I couldn't believe it.  And this became evident after the first two or three months.  Kevin and I said, “Well actually, even if the project comes to a complete stop now, we've done it.  We've proved what it is: it's TB.”  So we started broadcasting this like mad.  You'll find, in the early 1990s, loads of papers written by Kevin and me and others just banging the TB drum, and the importance of prophylaxis, diagnosis, etc etc, because we'd seen it; we knew TB was the major problem.

SA:  And what was happening to Slim, this cryptosporidium?

SL:  Well, that was the point.  We saw a bit of cryptosporidiosis, but it rather faded.  Like all these things, you can do lots of rather small studies and find extraordinary things which turn out to be unrepresentative, and I think that probably was the case with cryptosporidiosis.  It was the same in Abidjan.  One of the things we discovered, and actually wrote up specially, is there's an infection called nocardiosis, which is a bacterial infection not seen very often.  But we found that for every ten patients with TB, one actually had nocardia.  Now, it does the same thing; it's the same sort of lung rot, and it spreads round the body and looks much like TB.  Even down the microscope it looks very similar till you see that the bugs are very different.  And we postulated that actually a large chunk of what appeared to be TB empirically, clinically, radiologically -- but it was smear-negative, in other words the sputum didn't have it -- might actually be nocardia.  And we said, “Actually nocardia is under-reported.”  Now, that proportion -- one for every 10 TB cases -- has never been found anywhere else, and it's actually a spurious finding.  These things happen; it doesn't matter; it's all good learning.  

This is fantastic, this is hot feedbackI should say that whilst we were doing this project, the clinicians in the hospital in Côte d’Ivoire very rapidly got wind of it and every Saturday morning there was a ClinicopathologicalPertaining to both the signs and symptoms of a disease (the clinical picture), and the nature, causes and consequences of the disease (the pathology). meeting of the cases we'd seen that week – with the professor of that particular ward, and his senior doctors and all the junior doctors as well.  And they all loved it.  No one said, "Ethically you shouldn't be doing this".  They all said, "This is fantastic.  We've never had feedback like this; this is hot feedback.  The patient died on Monday, we now know why he died.  This has never happened to us before."

SA:  And did they come and watch the autopsies?

SL:  They came, and they gave me every possible help.  The X-rays, they were thrown at me.  I needed an assistant to help with something; they'd arrive.  This was real clinical pathology going on hand-in-hand with management of cases, and they loved it.  They gave me a huge party and a farewell when I left and they said, “Please come back!  This is what medicine's meant to be all about."

So my point about overriding what we now regard as narrow consensual requirements is that it is completely outweighed by the public good it does.   I had two complaints through the whole process.  No parents of any of the kids complained, and we did about 150 children.  One person, a judge as it turned out, complained that both his sons had been autopsied by me.  

SA:  But if you'd asked for permission from the families you probably would have got it anyway, wouldn't you?

SL:  I don't know, and I didn't ask.  I didn't need to know that.  The point is we could do it.  Now if I tried to resurrect this project again it would never get anywhere.

SECTION 6

SA:  So what are you doing now?  How big a part of your work is AIDS today?

It doesn't happen overnight; there's a lot of analysis.SL:  I came back in 1992 to England having spent a year and a bit in Côte d’Ivoire, and the next two or three years were basically spent writing it all up.  It doesn't happen overnight; there's a lot of analysis.  Kevin was also back in Britain by then, which was wonderful.  He was a professor at the London School of Hygiene, so basically we sat together and wrote papers.  And that enabled me to get the chair here -- which, going back to where I started, I had at the back of my mind.  You know, doing ‘good work' leads to promotion.  So there was a self-interest element as well.  But primarily it was basic public health education: what is AIDS in Africa?  We have now described it.

Actually there have been some other autopsy studies in Africa, most of which have been done with me as a supervisor, and as an author as well, and they show more or less the same thing.  There's a lot of fine print and things on the side which are different, but the main bulk of the presentational problems were described by us in 1991, and I don't think that's going to change very much.  Not until HIV therapy is completely rolled out and AIDS in Africa then becomes like in England, where the disease pattern is different.  So it's an on-going story from that point of view.

Serendipity plays a part

What happened then?  Well that was until the mid 1990s.  Then I applied for the chair of pathology in Liverpool in 1993. Three great things have happened to me in my career, and I haven't told you about all of them yet.  One was meeting Michael Hutt here.  The second was that I did not get the chair in Liverpool, because I'd have had Alder Hey to deal with, that madman Dick Van Velzen, and I'd have been completely incapable of dealing with that.

SA:  Why d'you think you would have been incapable of dealing with it?

SL:  Because I'm not very good at managing people.  Third, there's no AIDS there!  I knew that even as I was being interviewed, because I'd asked the HIV people to tell me about their numbers – "How many HIV-positive people have you got on your books in the Liverpool area?"  The answer was 42, and I thought, “Oh, this may not be a very good idea!”  Anyway, vanity drove one forward, and thank God I didn't get the chair!  Chris Foster did.  Also Liverpool was primarily focussed on cancer, and I'm not that interested in cancer.  I'd have been hopeless there and I'd probably have had to leave after a while.  So that was the best thing: that I didn't get the chair there.  And the next best thing was that I got the chair here.

Michael Hutt: “the grand old man”

SA:  You keep mentioning Michael Hutt, he's one of the big people in your life?

SL:  He's the grand old man – the main person in my professional life.  In 1977, when I realised that infectious diseases were interesting, I said, "Who knows about infectious diseases in London, in Britain?" And everyone said, "Well the only person who does anything about them is Michael Hutt."   He was actually working three rooms along from where we are now in St Thomas’.  He was the professor of geographical pathology – a unit he and Denis Burkitt had set up with support from the Wellcome Trust in the days when they funded things like that.  Its mission was to promulgate tropical pathology.

SA:  What on earth is ‘geographical’ pathology?

SL:  Well, it's tropical pathology.  It's pathology that's different in the tropics than it is here.  This was before HIV was 'invented', of course.  Michael Hutt would have been the same age as my dad, born in about 1923, and he retired in 1983 when he was 60.  He had been here in the 1950s as a junior doctor and a trainee pathologist, and then as a consultant pathologist.  He decided to do something different and go abroad, and he went to Makerere Medical School as the pathologist.  He took over from Jack Davis, who was the founder professor in the British colonial medical school set up there.  So Mike was the second professor of pathology at Makerere.  He was there for the 1960s – the good days.  He gets out about the time that Idi Amin comes in – so he gets out in time, because those were the Bad Days.  It was virgin territory for describing diseases

So Mike and people like him – and there were a lot of people like him, all very famous clinicians, epidemiologists -- get their knees brown and make Makerere a jewel.  There were loads of exciting things happening; it was virgin territory for describing diseases. Burkitt's lymphoma is just the most famous one.  And Buruli ulcer, a ghastly skin diHe was the nicest person I've ever metsease, was described in Buruli which is a little place on a bend in the River Nile in Uganda. It's a bacterial disease in the same family as tuberculosis and leprosy.  So what do you do?  You set up an MRC Buruli ulcer investigation project.  Who comes out?  David Bradley and John Stanford, a very famous microbiologist.  Anyway a lot of people come out and make their names and describe the disease.  A lot of fantastic work is done, and Michael facilitated everything.  He was a wonderful facilitator; he was the nicest person I've ever met.  

A huge archive of genuine tropical pathologyAnyway, he came back in the 1970s, and he could have had a regular chair here, but he didn't want to do routine diagnostics -- because once you've worked abroad it's boring, frankly.  So the Wellcome Trust give him a geographical pathology unit and they pay him and they pay Denis to promulgate tropical pathology.  And he does that by providing a weekly diagnostic service for Malawi, by post and by aeroplane.  A box of all the tissue diagnostics for the whole country of Malawi is assembled with the request forms and flown -- by BOAC (British Overseas Airways Corporation), I imagine it was then -- to London.  It comes here and Mike and a junior trainee would chomp through the specimens and the results would go out the next week by airmail.  A huge archive of genuine tropical pathology was there.  

He wrote articles about it and he spoke.  I met him at a gathering where he spoke about medicine in the tropics, and I said, "This looks very interesting."  He said, "Come and see me", so I did.  He asked what I was doing and I told him, and he said, "Are you interested in infectious diseases?"  I said, "Yes, I really am", and I told him about the amoebiasis case, and other things that I'd seen since then.  He said, "D'you want my job?" and he told me, "It's really representing tropical infectious diseases pathology in this country."  I said, "Yeah!"  And he said, "Fine, come and work with me when you've got your MRCPath, when you've grown up, and that's out of the way.  Come on a course or two."  

I came here in 1979 having done the exam the previous December, and Mike said, "I'll fix it," and he fixed the Wellcome Trust to pay me, which was very nice of him.  I wasn't interviewed for anything – or if I was I can't remember it.  I started working here, and also in the School of Hygiene doing some experimental parasitology pathology – lots of things like schistosomiasis, which we published on and which was quite fun.  I saw a lot of experimental parasite stuff – of malarias, babesia, schisto, cestode worms, and various things.  People basically showed me things, and I said, "That's interesting; this is what it is."  They found it quite useful to have a proper pathologist there to say what mattered and what didn't matter.

SA:  So did you work on his archive here…?

SL:  I worked on the archive here and at the School of Hygiene, and at the outreach station in St Albans, which has long since closed down.  And I wrote a lot of papers.  Then Mike said, "We've got to get you to Africa; you've got to get your knees brown.  Where are you going to go?"  We found this huge map of the world, and he said, "You can't go to Uganda, there's a bloody civil war going on.  I've got friends in Nairobi, we'll fix you up there."  I got a job there, no interview.  And the Kenyans paid me, the Wellcome paid me a bit, and the great thing was – and it doesn't happen now – that the British government paid me.  There was something called the British Expatriate Supplementation Scheme, BESS, and there were a whole load of middle-aged Brits out in the colonies, doing ‘good work’, on a lifeline for ever really.  But it was coming to an end then; I was probably one of the last people who ever got one of these.  

SA:  What hospital were you working at?

SL:  About the only place you could work in Nairobi as a pathologist was the main hospital, the Kenyatta Hospital.  I was based in the path lab there.  It was run by friends of Mike Hutt's, people he had trained in Uganda.    There was Alfred Kungu, David Gatei... Mike must have contacted them and said, "I want to send out Sebastian Lucas, will you have him?" and they said, “Yes please”.  The reason became very obvious because the moment I arrived I took over the lab and they went off to do their private practice in the afternoons.  Fine.  

I was doing much of the diagnostics for KenyaI spent two years there just diagnosing and working in the mortuary alternately. I was doing much of the diagnostics for Kenya for an entire year, and teaching the next generation as well, on double-headed microscopes.  It was great fun; I made lots of friends.  And again, those people I taught, the ones who are still alive, are now the ones who run pathology in East Africa.  The ones who aren't alive all died of AIDS.  These things happen. There was a whole cull of rather senior people who disappeared, sadly.

SECTION 7

The Alder Hey controversy

SA:  Changing the subject to the state of pathology now – was Alder Hey a real turning point, from the point of view of recruiting new young doctors who want to be pathologists?  And also having material to show them and learn from?  What do you feel?

SL:  I don't think it was. When Alder Hey happened I was here.  I got the chair here in 1995, and I'm still here 12 years on.  

When Alder Hey happened, we were more vulnerable than most other places in the country because we have the biggest –and I joke not, it's publicised – we have the biggest collection of paediatric kidneys, hearts, and things anywhere.  Much bigger than Bristol.  Because we're a big cardiac unit, a surgery unit.  We had a professional Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathologist who was very interested in congenital heart disease, and she kept everything -- because one did; no criticism of her.  She's no longer here.  She took this whole business very badly, actually, and after some months she left, and now the last thing she'll ever do is perinates.  All that phase of life, all gone, she's doing other things now.  I met her recently and she's very happy somewhere else, and that's that.

Damage limitationI have to say the chief executive here was brilliant.  He's just left, actually, Sir Jonathan Michael, and I have only praise for him.  He was wonderful.  He realised that organ retention was a big issue, we were vulnerable (he didn't know how vulnerable, but he found out pretty quickly!) and it had to be addressed head on, openly.  And we had to have an absolute protocol about what to do.  So very rapidly we had a team organised with all the right sort of people to work out what we'd got – that was the first consideration and there was quite a lot of work for us to do.  There was the national enquiry about what we've got everywhere so that was part of it.  Damage limitation, in the sense of: if we're vulnerable, what are we going to do?

One thing that didn't happen here, and that did happen in Bristol, Alder Hey and other places, was that we didn't have a whole lot of anguished mums and relatives on our doorstep.  You might have thought we should have had, given the numbers, because we had masses of stuff.  But we didn't, and I think the reason is that London is very different from Liverpool.  I think it's partly because Liverpool is kind of cut off historically, economically, and socially... and it's just different.  Whereas patients coming to this hospital – and it's Guy’s and us together – come from an enormous catchment area, so big that they never get together. You could never have a 'We Do Not Like Guys and St Thomas' Action Group' because it would be physically impossible.  So from that point of view it was diluted.  We had a few die-hard problems which we have dealt with.  We talked to people, and we were not sued.  We handed over stuff when we wanted to, but not very much stuff got handed over…  Most people were not interested.

SA:  But isn't it that, suddenly, because there was the media storm, there was the assumption that what was going on in pathology was wrong?  I mean certainly there had been rather nasty maverick people like Van Velzen…

SL:  He wasn't nasty; he was just two standard deviations on from anyone else.  No, he is not nasty.  We all have our own views of Van Velzen; all I can say is thank God I didn't have to try and manage him.  He was a peculiar person, I knew that from, in a sense, having interviewed him when I was thinking about getting the job there.  He was obviously odd, but you know, there are an awful lot of odd pathologists around!

SA:  Okay, so what he did was standard for the time?  And was it useful, or wasn't it?

SL:  No, this is his big mistake… What he was doing was collecting an enormous amount of material – I saw it and I admit it didn't occur to me to question whether he should be collecting it -- in order to work on what were important projects, like what causes SIDS (sudden infant death syndrome), and so on.  Now that's an important project, and he had hypotheses.  What he didn't do was actually any work on this.  No, that's slightly unfair – he didn't do so much himself, but he did have a few non-pathology scientists working with him who were working through some of this stuff.  Not very fast, and not actually, in retrospect, very productively.

SA:  But does that make it unethical, the fact that someone hasn't got round to doing the research?

That was professionally awful and unforgivableSL:  Yes, and that was a major criticism.  The major criticism of what Van Velzen was doing was that he took much more material than anyone else did, okay?  Secondly, a very legitimate criticism is that he actually lied, in the sense that there were reports coming out which said he'd done work on these materials which he obviously hadn't because they were still intact.  That was professionally awful and unforgivable.  But if I say he was only two standard deviations beyond many other people that I know…I know other people who lie.  I do a lot of autopsy review work, I know lying goes on still.  So he's not alone there.  He took stuff intending to work on it but never did, and probably knew he would never be able to because he'd just got so much material he knew he'd never get through it.  But he just kept on collecting all the time.

SA:  Okay, but does that not go into an archive that other people can use?

SL:  Yes, they could do if it was properly documented.  But it wasn't properly documented, so that archive is effectively useless to anybody else.  So that's another practical point.  And he didn't tell people he was doing it.  Now there's a lot of discussion as to whether he needed to have told, in all circumstances, what he was doing, but I'm not going to revisit all that, because it was a mess.  

But there's still a huge grey areaAnd actually in a way things haven't got all that much better.  They've got more bureaucratic, but there's still a huge grey area in tissue retention across the consented to coronial autopsy spectrum, and it's not very clear.  Or it's very clear what to do if you want to stay absolutely within the letter of the law, be squeaky clean.  You do nothing!  That's easy.  But the point is, to be good and to be useful for public health you need to do a bit more than that, and that's where the grey areas come in.  I experience this day by day, and I know how to deal with it because I've rubbed along the raw edges… I've worked out how to do things that are ethically reasonable with appropriate consent built in, but so that you get what you want in order to advance knowledge and help people.

SA:  This is what I wanted to ask: the rules now, are they really so constraining that you're actually losing a lot of what might be beneficial?

SL:  Absolutely.  Do you want me to explain?

SA:  Yes I do.  I think it's very useful to do so.

The impact on recruitment

They really were demonised by the publicSL:  Okay, the impact of Alder Hey…You asked me first, did it impede recruitment into pathology in general?  And the answer is no, not as we saw it in London.   That's for two reasons.  One is that it didn't really put that number of people off… I think it put people off going into Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathology, because they really were demonised by the public, and there were some very nasty incidents of pathologists being criticised through their kids, via their kids' friends, and that sort of stuff.

SA:  But the rest of pathology you don't think was affected?

SL:  Well, our recruitment is funny.  I have to say Histopathology UK Inc is not self-sufficient.  We don't supply all our needs.  We have to import.  So if there was a problem in getting British graduates to fill jobs, there's no lack of people from abroad, specifically Iraq and India, wanting the jobs instead.  So we've always got the numbers.  

SA:  Really?  And are they trained in those countries, and are they good?

SL:  It's variable.  So if you look at the recruitment patterns for cellular pathology, histopathology, there's actually an increasing trend for overseas graduates rather than local graduates to fill those posts.  Whether Alder Hey had any impact on that, I wouldn't like to say, but the point is that in terms of total recruitment, it made absolutely no difference.

The value of archives

SA:  I’ve been told that young people who go into medicine now are learning less and less pathology -- it's being pushed out by considerations of the ‘art of medicine’ rather than the science…

SL:  Sure, I agree.  Speaking purely personally, I'd say this has nothing to do with Alder Hey.  



We have the biggest pathology museum in the country here, the Gordon Museum in Guys.  Not for a moment did we shut a door, remove an exhibit, close anything at all -- unlike Dublin, which closed its museum.  Unlike another medical school somewhere up north, which shut it off.  Unlike the London, which cemented it in – I joke not!

SA: And made it inaccessible to anybody?

Now this is not prurient stuffSL:  Yeah.  A whole lot of deans took fright, and actually shut the museums.  Without even thinking very much, we here said, "We do not do this.  We will keep our displays open."  And particularly, we have a fantastic series of pots of malformed fetuses -- I'm very proud of them, though they are nothing to do with me, they're history.  Now this is not prurient stuff; this reminds the students that this is why we have prenatal scanning: so that we don't have more babies coming out with no heads, spina bifida and things like this.  It's a brilliant display, there's nothing better.  You can be lectured like mad about the importance of antenatal screening; 10 minutes in the Gordon museum and you can see why you do it. 

Status of pathology today

I don't think Alder Hey had any impact reallyThe reason why pathology is dumbed down and that medical students don't know as much as our generation, or even the next generation after that, is nothing to do with Alder Hey, I don't think.  It has everything to do with touchy feely medicine, with the public health people, with the GMC actually thinking pathology is not terribly respectable or important.  I don't think Alder Hey had any impact really at all.

SA:  Okay, let's set aside Alder Hey, but why is the GMC beginning to feel that pathology is not all that nice and that the touchy feely stuff is more important?

SL:  I wish I knew.  I do find it very peculiar, and I'll tell you why.  If we go back to what I said hours ago about there being three bits to pathology: the surgical diagnostic pathology is very interesting because that's had a huge renaissance.  I mean it was never small, but it's got bigger and bigger and more and more important.  When I started in pathology, diagnostic pathology – I'm talking about surgical pathology, bits of people – no one over the age of 75 ever had a biopsy, because the surgeons wouldn't know what to do with the answer.  Nowadays that's the median age of what we get!  Average age of patients presenting with lung cancer is now 75.  And we're operating on them – they're taking lungs out and things like that.  

No longer are we invisibleSecondly, our reports then were not good compared with what they are now.  Everything today is pro-forma driven -- minimum data sets, and all that, you know?  And they're good; I'm right behind it because they give information, and the treatment options have changed so much.  Today pathologists are a central part of management; we see our clinical colleagues on a weekly basis.  I'm going to see all the lung people tomorrow morning for an hour and a half.  They will know what pathology is because I'll be sitting there right in the middle, reading out the answers.  No longer are we invisible.  So, it's a little odd that this has all got out of phase.  But that wasn't the case 10, 15 years ago when we all did it kind of by post, and by just letters and things.

SA:  Really?  So you weren't a face in the team then?

SL:  No, that's the point.  We weren't a face in the team.  There were mutual meetings – I don't know what we called them, but we call them multi-disciplinary meetings now -- but they weren't an obligatory part of the cancer network systems.  And so the pathologists really were back-room boys, and often relatively invisible.  (There are huge exceptions of course, many famous people who were very much more prominent.)  But that would be inconceivable now.  We all do multi-disciplinary meetings.  In fact they're the bane of our lives!  You know, some people, such as the haematopathology people, do three a week. They do nothing else!  Either getting ready for, or recovering from, these meetings.  I don't have very many to do.

We are kind of death-taintedBut what we still don't have, and I don't understand why, is we don't have the full-hearted support of our clinical colleagues.  I'd lay this on the line: we don't have the full-hearted support of our clinical colleagues as absolute equals.  They may say we are equals, but we're not treated like that.  We're still treated rather differently, slightly hands-off because we're lab boys, we don't touch the patients so much, specially if we are kind of death-tainted as well, which would apply to me because I do autopsies.  We'll still have the rather condescending: "We're not going to give you all the clinical details because you can probably work it out from the biopsy yourself, or you should be able to."  That still happens, and I do find this very odd.

SA:  That's fascinating.  So there's a prejudice within the medical setting, it's not just from the outside world?

SL:  Yes, there is, but I think that'll be overcome, as we are absolutely critical to this.

SA:  But you always have been.

Party time during 1991 sabbatical in Abidjan, IvoryCoastSL:  Well, not so.  It's only really in the last 40 years that diagnostic histopathology has become truly respectable.  Prior to that, surgeons would take out breasts and colons and say, "That's cancer", and throw it in the bucket -- not have it confirmed and evaluated for stage and for what you might do next.  My inspirational first pathology teacher, Joe Smith, was appointed specifically to UCH to be the first proper professor of diagnostic histopathology, because previously all diagnostic histopathology had been done by very famous but experimental pathologists who did wonders in general pathology and wrote text books that are still the gold standard for that sort of thing, but were hopeless at diagnostics.  Then the surgeons got together and said, "We are fed up with these crap answers; we want a proper pathologist who knows what he's doing. Get us someone who's trained in America."  So they got Joe Smith.

SA:  Really?

SL:  Yeah.  That's how it started.  It's only 43 years since he was appointed there.

SA:  So what's happening now is you're having these multidisciplinary clinical meetings, but at the same time the training of medical students is going in the opposite direction -- it's going away from that sort of multi-disciplinary approach to clinical care?

SL:  Exactly.  And this is very odd.  We obviously encourage students to come to these meetings, but they don't come to enough of them.  I think they should come to all of them, because you see everything in one go there.  They won't actually see the patient, but they'll hear about the patient, they'll see the imaging, they'll hear about the pathology, and they'll hear about the what-are-we-going-to-do-next, which is what medicine is all about.

SA:   But how can they learn medicine without seeing all those angles?

SL:  Well that's a very good question, and I'm glad you asked it!  Please ask someone else – I don't know. 

The decline in autopsy rates

I must go back to the autopsy and say two very important things, and then I'm going to shut up fairly shortly and get off home to Islington!  

In terms of the autopsy, two important things have happened.  One is that the consented autopsy rate has declined.  We now have one every fortnight asked for in this hospital.  One a fortnight... We used to do three a day!  So we do 25 a year.  That means that very few doctors here have ever asked for an autopsy, so they don't know how to ask for consent from the family.  And of course, because of Alder Hey, the consent forms have got longer.  

They've assumed all autopsies necessarily are badSecondly, they've never seen an autopsy.  Because of the down-spiral in pathology education, you've got a whole group of new consultants in their mid thirties, in all aspects of medicine, surgery and what have you, who've never actually seen an autopsy at all.  This is amazing, given that in this medical school every student sees an autopsy.  They may only have seen one, but at least they've seen an autopsy.  But we have consultants from other hospitals who've trained there and who've never seen one at all, so it doesn't occur to them that there's any utility in it, and that's a problem.  Then there's the coronial autopsy business, which, as we've already hinted, is of variable quality and output.  And the problem is that too many of the doctors, senior and junior, have seen coronial autopsy reports which bear little or no relationship to the patient they thought they were looking after, and they've assumed all autopsies necessarily are bad, therefore they're not worth considering.

And I just want to reiterate that last point, which is very important.   The work done on the coronial autopsy front has been of very variable quality and too many clinicians have seen very bad reports which are not ‘the truth’ and don't represent what the patient had, and  they have therefore been put off, thinking that all autopsies are like this.  That's the fault of the coronial system, which is something I don't want to talk about now in any detail, but is a huge problem.  And it’s only beginning to be addressed now, but no one quite knows what to do.

ENDS

 

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