John Feehally interview with Prof Sir Netar Mallick – 2017
J: Today I’m interviewing Professor Sir Netar Mallick at his home in Manchester. And to start Netar, before we hear about how you became to be a nephrologist, perhaps a little to start with about how you became to be a doctor.
N: Personally, I had no intention of becoming a doctor, I wanted to be a lawyer. But my brother, who was significantly older than me, went to Cambridge to read medicine, and did not succeed. My father thought that one of the sons should do medicine. So, I was ‘persuaded’ to do medicine, and ‘persuaded’ also to come to Manchester rather than go to an old University.
J: Your father was a doctor and therefore thought there should be somebody else in the family as a doctor.
N: Yes, my father qualified in Lahore. Because he was a Hindu in a Muslim part of India, he couldn’t get a job, even though he had been at the top of his year. So, he came to England to get further qualifications and stayed and developed a general practice in Blackburn.
J: And when you began to do medicine in Manchester was the intention always to be a physician? What was the plan when you started?
N: Yes, good point. I think I knew early on I didn’t want to be a surgeon. I don’t have the hands or perhaps the stamina to be a surgeon. So, the option was to be a physician, and that’s what happened.
J And then the first exposure to nephrology was what?
N: Yes, that that that that was interesting, because it came about in an unusual way. When I qualified, I then met my future wife, though neither family were keen on this. She went to work in the States, as au pair to the professor of American Studies, who’d got a post at Harvard for a year. And I got on very well with our then Dean, Professor Mitchell. I was president of the Union in that particular year, and he’d given me an extension of six months to do that. So I said, I do not want to do my house jobs yet, I want to go to the States, and he said, “what on earth do you want to do that for?” So, I told him, and he wrote to Harvard. And Robert Gross, who was one of the famous cardiac surgeons at Harvard (he wrote early papers on the surgical closure of patent ductus) offered me a job. I went there and spent a year developing the first extracorporeal circuits for open heart surgery, and published three papers on it in 1960.
We nearly stayed, but we decided we would come back, and I looked for a job. And of course, the house job I had been offered (which was actually on the unit I eventually ran at the Manchester Royal Infirmary (MRI)) had gone to someone else. I did find a job, but it was on the urology service. Now shortly before I came back, Robert Platt, who was then the professor of medicine, had been gifted a Kolff dialyser. the only one to come to the north of England. He had not the first idea what to do with it – not a clue. I never saw him out of a suit. (But he’d always been very helpful to me personally, and I’ve been grateful to the family support he gave me). So, he went to the urologist Thomas More, and said ‘Thomas, would you run this machine for me?’ So, when I arrived, they were all looking at this extracorporeal machine I was the houseman, but the only one that had any idea about the circuits and so on. So, I became heavily involved in the first Kolff dialysis at MRI.
Somewhat later, when I began looking for SHO jobs, I went down to the medical professorial unit in Cardiff and they listened to my story. They also had a Kolff dialyser on the unit and I think this partly encouraged them to take me on, although I didn’t get immediately involved with it. But when the registrarship became available with responsibility for on looking after the dialyser, I was shooed in to the job.
J: So, you’re on the medical unit, and the only person who actually understands how to run a Kolff dialyser.
N: Yes, and of course, that was in the early 1960s. And one day a woman called Dr. Dennis, from the Department of Health, came to see Professor Scarborough, professor of medicine and a haematologist, and said they wanted to put one of the twenty renal units they had decided to develop in Wales. And the Cardiff professorial unit was the obvious place for it. Now, I think he blanched at the thought. So he came to me and said, ‘will you sit on the committee for me because I haven’t a clue? And I said yes. So, I think I was 28 or 29 years old and I went and sat on Hugh de Wardener’s committee, and became involved in that way. Then I did all the planning for the renal unit in Cardiff, and they offered me a consultant job to run it. But I said ‘I don’t know enough. I know how to run an artificial kidney (I’d been running the service for a couple of years) but I don’t know very much about kidneys. And they didn’t know what to do with me. They said, ‘Well, you either accept the job, or we have to get somebody else to do it’. And I said, ‘I’m not going to do it’, which was a spectacular miss really. And then I had to look for another job. I applied for a fellowship to go to an American centre – Robert Berliner was prepared to have me, but I couldn’t get the money. So, luckily, Douglas Black, who was here in Manchester, who I had known because he’d been with Robert Platt offered me a job. I came back down the ranks as a lecturer, but it was a big renal setup. So, I began to learn about renal medicine.
J: So, when you were in Cardiff you knew how to run a dialysis machine, and you looked after a few patients, but you didn’t really feel you actually understood nephrology sufficiently.
N: but I didn’t. It was barn door obvious. I suppose you could say nobody did. But of course, there were a large number of the then chairs of medicine who were intellectually nephrologists, who Douglas called ‘nephrophiles’. They were interested in the physiological disturbances which went on, but in terms of renal failure treatment they hadn’t a clue, of course. Knowledge of the kidney was in the hands of a group of intellectual giants, really. And you knew you had to bridge that gap, somehow.
J: And so, you really learnt the intellectual and clinical base for that here back in Manchester, when you’re already here.
N: Yes, they appointed me lecturer and the people above me were Geoffrey Berlyne, of course, who was famous in his day, . I don’t know if you’ve ever looked at his book on nephrology. And Bill Stanbury whose work on metabolic bone disease was legendary in its own time, and Douglas himself, who was a major nephrologist in the intellectual era.
And so, I was expecting to learn a great deal, which I did for a while. And then after maybe 18 months Geoffrey Berlyne went back to Israel. I was at the International Nephrology Conference in Mexico City in 1967 and Douglas came up to me one day at the congress and said’ ‘Oh Netar, I think I should tell you, I’m leaving, I’ve been appointed the advisor to the Department of Health. I think you’re going to have to take over’. I had, by then, got consultant status.
So he went, and Bill Stanbury took over as professor of medicine and was not really pleased to have me there. If you remember, dialysis was not the flavour of the month in Manchester at the time because the first ever hepatitis epidemic had occurred in Manchester, just a few months before I came back in 1967, and killed several people and nearly killed two of the doctors. Jack Tinker (who became a very well known, intensive care doctor in London) was comatose for a while and Peter Ackrill was very seriously ill. And of course, they lost some of the nurses, a technician and all the patients. All the patients, there were six or seven patients, they were the only patients on chronic dialysis, and they all died.
J: We may come back to that because that’s a very big pivotal moment, isn’t it?
N: After the hepatitis outbreak it was only because of Douglas’s persistence, that we were able to develop a transplant service, with no dialysis service. Thanks to him we had three small dialysers on top of the professorial medical unit, which were used to support the transplant service. But the idea of somebody coming in as a nephrologist and redeveloping a dialysis service at MRI with all its history and then developing transplantation on the back of it was anathema. And when Douglas left, I felt the full force of the fury that nobody wanted me there. They wanted it all to go to Withington, where the dialysis unit had been developed. But Douglas had made sure that the transplant unit was at MRI, and I was involved as transplant unit physician from the word go. And I knew we needed dialysis facilities, we couldn’t do without it.
The short story is, I got them through the combination of wile, bloody mindedness, and some help from the region. We managed to get a few dialysis beds alongside the transplant beds, because without them you couldn’t do transplant, and then gradually expanded the service up. But it left permanent scars because a lot of people felt it should never have happened.
J: I’m interested in why you ended up in nephrology. You’ve described the ‘ mechanics’ of how you got there but as this was all happening, did you think to yourself: ‘This is really interesting. I want to do it’ or was it happenstance taking you there? Because it’s a big step to go into an emerging specialty, which has real uncertainty about it, don’t you think?
N: yes, in retrospect, you wonder how you did it. Just before I came back to Manchester I enrolled in the Inns of Court because I was intending to leave medicine, I didn’t think it really fitted with me. And the only reason I stayed was because I thought I’d better get an extra qualification, otherwise I’d have wasted seven or eight years. So, I got the membership. And at the time I got the membership I spotted nephrology. And it was such an interesting challenge. I would say that I got hooked on the fact that every day there was something new. .
J So there were intellectual challenges, and organisational challenges?
N: All of the above. I think it was just a fascinating time. I had also developed a peritoneal dialysis machine when I was in Cardiff, and we published that and actually made it commercially viable. So we could do things and every day there was something happening. And so, I just never went to the Inns of Court.
J: You describe your very first experience with haemodialysis with the Kolff. And presumably, that was just dialysing acutes.
N: Real acutes. I mean, they were really, really damaged.
J: And likewise, you described developing a PD cycling machine in Cardiff. And again, was that for the acute use only at this stage?
N: Yes, it was.
J: So, the chronic thing only happened when the Department of Health identified Cardiff as a place and there was a discussion about chronicity.
N: That’s what happened, transplantation was being developed in Cardiff simultaneously. So, the need for some dialysis facilities was essential, and there was a small unit develop for regular dialysis .
J: And in Manchester, presumably, also, the Department of Health would have said Manchester should have a unit. And the debate was simply whether it should be at Withington or MRI or both.
N: Absolutely. In those days, what people did with inconvenient services was put them in the non-teaching hospitals. If you look around the history, even in Leicester, you know, that’s exactly the sort of thing which happened. Nobody wanted to know – this wasn’t for the men in suits and ties. This was for the urologists or the hoi polloi to manage.
J: For the youngsters nowadays, they’re so used to seeing integrated care, they don’t have this notion that transplantation was developing, and dialysis might or might not be developing alongside, and they weren’t always necessarily talking to each other at some stages, I guess. But you being physician on the transplant unit, at least you made sure that happened.
N: yes, that didn’t go wrong with us, because Willy Orr, who’s no longer with us, was an exceptionally good young surgeon, and had been abroad to study transplantation and came back to the department. And he and I formed a very close friendship. We personally got on very well. And he did the surgery, and I did the physician bit, and you know, we just got on with it. We lost the first five patients but all of a sudden it started to click, and people were living. The reason we lost the patients is that they were desperately ill to start with. We put them on immunosuppression, and they disintegrated. But when we clicked, we were the second unit to go down to low dose steroids, following Mollies McGeown’s work in Belfast. It looked to me that it would work, so we just did it. And it worked. Patients who are surviving, and some of them survive to this day. So, the integration at that level was very close.
J: You said the first five died. How did you manage that? Nowadays if a hospital saw a new service and the first five patients died, you’d be stopped; it was clearly a different world then. For you and the whole team, did you have real doubts at some stage that this just wasn’t going to happen? You couldn’t transplant?
N: There are two or three questions there. The reason we were able to continue is because Douglas Black was there. I think without him, without his authority as the chair of medicine, (this was the late 1960s). I think there would have been an attempt to close it down, because there’d been such a disaster with dialysis. And I remember very well, we used to have Saturday morning meetings, with all the physicians sitting in a room and whoever was doing the presentation was sweating blood. And I had to present our data and say ‘we lost 5 patients’. And you could just feel the atmosphere – you could cut it with a knife. ‘So, what are you going to do next?’ ‘Well, we’ve done this and that’ And Douglas was sat there and because he was there, you weren’t dismissed. But we could see that we didn’t have much longer to go. And then luckily, things started to be turned around and three or four patients did very well. So, of course we presented those immediately. And then our critics went quiet and it took off, but I think, it was a fairly close call.
J: Did you have self-doubt at that point? Because, when I started in nephrology, dialysis and transplant were already up and running. But you were at a very developmental stage. I mean, did you find yourself thinking, maybe this isn’t possible?
N: Well, not really, because we knew it was working elsewhere. We knew it worked, and we could see where the problems were. When you take something on, if you take it on with self-doubt you’re not going to get anywhere. You have to think ‘I’m going to get this thing to work’. To some extent, you learn to do the right things, and to some extent it’s luck. But I remember those Saturday morning, meetings very well; it was very, very tense.
J: And when all that was happening in the late 60s and early 70s, did you ever imagine we’d end up with the situation now, which is just so large and successful and costly and a vast healthcare burden? Did you think we’d be there by now? Or was just not possible to think in that way?
N: The answer to your question is no, we didn’t. And the answer to your question is that even with the very high intellectual levels of the people we had around us, we did not foresee it. Because we’re dealing with a predominantly young population, there was a lot of talk about how the cumulative patient numbers would grow because people survive, and mre were taken on on. And if you went on the wards, you would not see many patients over 65, or 70,most were younger people. So the concept of looking after this vast, increasing aging population, just did not exist.
And the possibility of treating diabetic kidney disease did not really exist, because what they were really trying to do was to keep diabetes itself at bay, and it was still mainly type one diabetes. And so, where the challenges have come since was not foreseen, or even imagined. I don’t recollect seeing any early papers or hearing any discussion about the rising prevalence. Eventually our own work began to show the problem and that made an impact on us.
J: And presumably, you also knew at that stage, that whatever process was being used to bring patients in front of you for treatment was sporadic, and it was inequitable. So just dealt with what was in front of you?
N: Yes, it was a first come first served basis. If somebody was there, and you could deal with it, you dealt with it. And if they were there and you couldn’t deal with it, you didn’t deal with it. We didn’t have a committee to decide who should be treated because we’d seen some evidence of such committees elsewhere which had run into the ground. I think there was one in Sheffield.
J: On the model of the original Seattle committee?
N: They had a number of religious people who I think just couldn’t agree. I think it was Sheffield. And we simply did what we could.
But I know I had to go to individuals and their families to say, ‘We can’t do anything for you’ I very clearly remember two such cases. One was an extremely nice well to do bachelor; I remember having to say to him, he was only in his late 50s, ‘there’s nothing we can do for you’. And I remember a very vigorous businessman in his late 40s with polycystic disease, and I remember having to go up to him and say we couldn’t do it. There was a reason for him – he had heart disease. At that time, anything with that history, took you straight out of consideration.
J: You wouldn’t be able to dialyse or transplant.
N: In a sense that that was important. If you weren’t transplantable, because we were running alongside the transplant service, we’d try to send them to Withington, but they were overloaded in no time.
J: It’s very interesting hearing that because in South Africa at the moment, for example, in Cape Town and Western Province, they use such a model. If you’re transplantable, you have access to chronic dialysis as a preparation for transplantation. If you’re untransplantable, you don’t have such access. And many of my contemporaries and younger nephrologist are horrified that that could be such a process, but it was effectively what you’re describing.
N: It was. I know this particular businessman went all around the country hoping to get onto dialysis but still couldn’t find somebody to take him on.
J: I was going to ask you about what might have been your worst experiences along the way. And I suspect we might have touched on two of them, one of which was Hepatitis B and the other was the early transplantation problems.
N: We had to redevelop dialysis, in the knowledge that one case of hepatitis would have closed the place. Because the experience had been absolutely horrendous – all over the national and international papers, all over the medical press. Geoffrey Berlyne got terribly hit because they said, ‘Oh, you made a terrible mess of it. Nobody else is having this problem. You obviously don’t know what you’re doing.’’
Of course, after that hepatitis developed in many other units. But by then he’d been badly damaged – ours was the first hepatitis outbreak and it happened to be one of the more vicious ones. So, I knew that if we had another case we would be finished So we had to make sure we carefully followed what were then the Rosenheim recommendations. We did and never had another case. And maybe we were lucky, but we were very, very careful.
We did publish one of the first tests for hepatitis B, and then we began to use it. And I remember an occasion, quite early on shortly before Christmas, when one of our two dialysis technicians (they washed the boards of the Kiil dialysers and rebuilt them between dialysis sessions) turned up positive. And I though ‘ that’s curtains for us because if she’s positive everybody is positive’. Now at the time they were doing the hep B test with turkey cells, and she’d been out buying a turkey. We repeated it and it was negative! And so, we managed to keep the unit free of hepatitis.
J: And I appreciate you weren’t around for the Manchester epidemic, but I can imagine how awful it was if all of the dialysis patients died and you said you lost nurses and a technician?
N: Yes, one of the technicians who was regularly carrying specimens back to the lab. He must have spilt something on himself and not cleaned it and he died.
J: But then as you say, it happened in Edinburgh, it happened in Guys…
N: All of a sudden it just cascaded; it was everywhere. Edinburgh had a massive outbreak, Woodruff in Edinburgh was a huge figure in medicine Once his unit got hit, you know, the idea of incompetence went away.
J: We’ve alluded to it a bit but this question of you having to look people in the eye and say, ‘I can’t dialyse you, I can’t transplant you’, or you looking people in the eye and saying, ‘we’re going to try and transplant you, but our chances of success are only…’ I guess all doctors have those sorts of difficulties. But for a young nephrologist, now, the emotional burden of that seems actually very difficult to imagine. Could you tell me about how it felt ?
N: I think I looked at it the other way around, I can remember the time where people are dying on the wards with uremic frost. If you got uremic frost you’d be put in a corner with this breathing and you’d hear the stertorous breathing. Screens would be put around and in two, three days they’d have gone. So, I suppose I thought everything was a plus, if you were doing something to move people away from that outcome. So, in a sense, you are moving forward. And I suppose because you were young, and you thought that everybody who was 50 was nearly dead anyway! And I remember thinking about a woman of that age ‘well she’s had a good life’. So our perspective was different. I think it was a much more positive view, we’re bringing people out of the mire, and we’re doing what we can. But of course, in the individual case, it was an agonising experience. I remember a woman with Alport, and shortly before she died, she found her son had Alport also and I remember her being just devastated by it. So, every now and then the carapace broke, and you really understood what was going on. But most the time you just carried on because you had to.
J: But when the carapace did break, did you ever have moments thinking? This is so difficult, emotionally, that I rather wish I were at the Inns of Court?
N: It’s a very good question. Maybe I should have done that. But the problem I had was a different one. I was suddenly pitched into being in charge of what had been one of the foremost renal units in Britain: I mean, Robert Platt, and then Douglas Black. And I had the current professor of medicine telling me to so and so off. And my view was I must to try to keep up the Manchester nephrology tradition; that was what part of what I was trying to do. So, I suppose having that foolish, stupid idea: ‘I’m not going to let this one drop’. I think that was the main motivation.
J: We’ve talked about the difficult experiences. But tell me what the very best things about those early days in nephrology, that really helped you along and made you think – Yes!
N: Obviously, the patients because those were very courageous patients. They knew they were in the new world. And I never ceased to be amazed at how flexible people could be. You’ve put on a family, living in relatively poor circumstances, the need to take somebody home and dialyse them at home. And the way people would adapt to that and do it and be uncomplaining. I found there were many inspiring moments. And the other thing I found inspiring were the nurses because the nurses put an enormous amount of time and effort in. And I never remember one complaining. And they’d take on dangerous jobs – it was a dangerous job being a nurse in a renal unit then.
J: If they weren’t aware their friends would have told them about Hep B.
N: There were times when student nurses would do the morning and afternoon rounds of the wards. And normally they would come into the ward door and walk around the ward with the sister. But when they came to the renal unit they stopped at the door. They wouldn’t come in. They were scared. It was a scary place. And so, I think the fact that you were working with people who were being courageous, and you were working with staff who were unstinting in what they would do, was very, very important.
J: And how did you develop that team, I mean, are these simply self-selecting people who got passionate about it like you did? Were there those who started off thinking this was great and fell by the wayside because they couldn’t take that kind of pressure.
N: Both. We had one nurse who committed suicide, we had another one who developed very acute SLE and died. And what was left was a core of people (some of whom you’ve met) who stayed with it, got into it. Judy Moon, for example. And it just developed a momentum of its own. You knew each other, you knew you were all trying to do the same job. And it attracted people who wanted to do that. And it gradually attracted a very sound core of people who became very experienced, were inherently very good, and slowly there was mutual respect. And I have to say, in our case (how can I put this delicately the boundaries were kept, which wasn’t the case in every renal unit. I think this also helped. Looking back, ours was a very professional service.
J: At the time your clinical team was developing, were there other models in internal medicine of teams of that sort, or was nephrology genuinely unique in the way it developed as a mutually respectful, multi professional team with doctors and nurses?
N: It was unique, the one which came after it, in which we helped to create the equivalent was the intensive care unit (because nephrology was part of early intensive care). That developed very much the same sort of sense of a team of doctors and nurses working together, putting in all hours, as nephrology teams did, and not stinting. There was nothing really like it, possibly neurosurgery was a bit like it back.
J: And within the model, of which I was very admiring, when I first came in nephrology, were there ever any differences of opinion about what was a nurse’s role, what was a doctor’s role? When and how did you manage if there were?
N: Those difficulties came from the nurses. Some of the nurses felt that they knew a hell of a sight more than the doctors, which was not untrue in some cases, and that they ought to be given status, which they didn’t have in those days.
I remember, we had a couple of sisters who were absolutely up in arms about this, and I managed to negotiate that they could order tests. They were given sort of SHO status, so they could do some things an SHO did; they couldn’t prescribe medicine, but they could give them and so on, and they could order tests if they needed.
And then of course, gradually, over time, the nurses became so much more expert than the doctors. Because when I started, I knew I had to be able to take a Lucas machine apart and put it together because if I couldn’t, who else was going to do it. So, I could do anything. But over a period of time, the doctors hadn’t got a clue. They came into this unit with all this equipment, and the nurses were doing it. So, the nurses would tell the doctors; ‘just leave me to it’. So that change did develop in my time of the nurse’s expertise, outscoring the doctors by a long shot – even the consultants.
J: Was that a good thing or just an inevitable thing? Or is it a regret that young doctors these days cannot do those technical things?
N: Well, I think they would be the better and the more comfortable if they could, because they would feel they have authority. But I think it was inevitable. It’s the people who are doing the job on the ground and doing it day after day after day who really get the expertise. Of course, now in some countries, there are doctors who simply go and work in a dialysis unit and that’s their job, and for them, this doesn’t apply. But for our sort of nephrologists. I don’t think it’s going to happen that they’ll get back to that technical expertise.
J: And the other thing that interests me about how the specialty developed, is that you’ve just described to me how you started off with dialysis expertise. Yet, by the time you recruited me to come and do research with you in the early 1980s, I thought of you as somebody interested in glomerular disease and immunology So that was a real change, too, I guess?
N: Well, I was able to do dialysis for the reasons we’ve discussed. By happenstance, I was more confident with extracorporeal circuits than anyone else. And if you worked in transplantation in the early days and looked at the patients coming through, immunology was the key. And that’s one of the first thing that they did was to recruit a couple of people from immunological research. And then we did some work on how patients with increasing renal failure were immunosuppressed, and a chap called Peter Byrne did his PhD with us on that.
Then I got somebody else to work on minimal change. Somebody else did some work on humoral antibody changes. There was no group at MRI studying immunology and renal disease before that. Douglas Black’s interests had been more in the small molecule disorders, the metal disorders, sodium, potassium, and so on. And so, I had to bring that up from scratch. But it’d always been interesting to me. It was clearly uncharted territory, and you could see that there were things you could do with it. And if you looked at it carefully you could do something. So that was really my main intellectual interest. I wasn’t that interested in improving vascular access for example. I grew out of it; I suppose in a way.
Settingthe service up was fine. But I never really investigated it.
J: And so, when chronic therapy started, it was haemodialysis. Right through, I guess until when CAPD started in I suppose 1979/80?
N: Yes. Because I’ve been quite involved with PD early on and got this machine going in Cardiff. Nobody else had designed one in Britain and Lucas (who had their headquarters near Leicester) built it.
Bob Coward, when he was our Registrar said he’d like to have a go at CAPD And I said, ‘if you want to have a go, let’s have a go’. And so we started a few patients and Bob was good at it. Then Ram Gokal came to join us and developed the CAPD programme.
And we were also getting involved in work with glucose polymers. Gerry Milner, a scientist and entrepreneur, had produced as a nutritional supplement Caloreen, a glucose polymer which did not taste sweet and could be excreted. Caloreen was a product of the modified Giovanetti diet which Geoffrey Berlyne had promoted in Manchester. This diet was designed to provide sustenance for patients with advanced renal failure who today would be on dialysis but could not then find dialysis places. It needed a calorie source which was not sweet. Geoffrey was in touch with an entrepreneur, Gerry Milner, a scientist with a background in the food industry, who had decided to specialise in developing foodstuffs for patients with various special dietary needs. He found a glucose polymer which was not sweet and easily taken orally, breaking down in the intestine to glucose and maltose. It filled the requirement for the modified Giovanetti diet and as I was working closely with Geoff Berlyne I was well aware of it. After Geoff left Manchester, Gerry Milner and I remained in contact and we did some studies of Caloreen’s kinetics after intravenous administration. . We knew we needed a non-glucose osmotic agent for CAPD, and realised that Caloreen had potential, given the limitations of high glucose as the osmotic agent, especially in diabetics.. Before Ram came one of my tasks had been to get more junior staff. I was allocated a lecturer and eventually a senior registrar and we had resource for a research registrar also. Chandra Mistry came to this post and took up the CAPD/Caloreen challenge. The rest is history and Caloreen, now of course known as icodextrin it remains a mainstay of clinical practice.
J: And now you were using haemodialysis and PD and transplant all together. Did you have a view about haemodialysis against PD? Did you regard them as modalities of equivalent value for different people?
N: I could never see that PD would quite match haemodialysis over a very long period of time. And indeed, I don’t think it really has, though I’m not saying it isn’t effective. When you’re looking at the very long-term patients, I think haemodialysis has proved to be the more reliable form of therapy. In the early days PD seemed to work for a year or two and something would go wrong. That period is extended now. So, I always thought PD was a necessary thing to do. But for Ram Gokal of course it became his field and I think he did a superb job on it. Though he was always very bothered by Stanley Shaldon having said that it was a second-class treatment for second class patients given by second classnephrologists.
J: That says more about Stanley Shaldon than it does about PD.
N: It does. I used to tell Ram ‘don’t bother about him’. But Ram got it very much in his head that he was running a second-class specialty which I think he showed he wasn’t.
J: When you look back now are you surprised that in some ways haemodialysis and PD are still the same as they were 30 years ago. I know there are nuances and refinements, but in the end if you walked around a kidney unit it looks rather similar.
N: I think the intellectual boundary was reached really. It’s very difficult to see with the current technologies that you could do much different, you’ve got to have access to the blood system, you’ve got to have a safe circuit. All this business where they dialyse once a day on the long-term dialysis, all of them seem to work in one way or another. But none of them is a sort of a quantum change in what you’re doing. And PD is PD. By its nature, it’s a relatively simple approach .
J: You might argue that one of the reasons dialysis has not developed more might be the dialysis industry because it wasn’t in their interest to have a radical change, or indeed to reduce the cost. Maybe it’s got stuck for that reason.
N: There have been a number of attempts, you know, to have portable dialysis, truly portable dialysis, with it being done here by Sandeep and Co. I can remember the very first small ones were produced in East Germany. But I just couldn’t see conceptually that it would really work over any length of time. So, if you talk about the actual dialyzer itself, whatever you do is going to be relatively expensive to produce. It’s got to be very safe. I’m not the sort of person I think who might answer that question versus someone like Roger Greenwood, because he has an engineering background and knows how they go about developing dialyser. I’m sure you were right in saying there isn’t the financial motivation to move away too much. And of course, there’s lots of money to be made.
J: Yes, and an enormous developing market as countries become richer and people expect to be treated. You made a very interesting point early on about the patient’s themselves and their courageousness, but also, what expectations were like and I, I didn’t know what it was like towards the end of your clinical career, but a question of patient’s expectations or sense of entitlement to treatment against those early days?
N: I think you could see it happening when I was retiring . But it was more hierarchical, there wasn’t the same internet access for patients. But I think dialysis patients have always had to have a sense of ownership of what they’re doing, because particularly if they went home. I know we haven’t touched on home against hospital dialysis. But I don’t think what has happened since where there’s a much more challenging attitude to the doctor was back when I retired in 2000.
J: We really haven’t picked up on the question of home therapy and explicitly home haemo but presumably, when you were developing your programme home dialysis grew as happened elsewhere. For example , when I was a registrar in Leicester at one point, I think we probably had as many people on home haemodialysis, as we had dialysing in the unit.
N: We had to because we had a very small unit. And so, the only two outlets were home dialysis, or transplantation. And of course, they were invested in make sure they weren’t exclusive. But we trained patients in Manchester Royal Infirmary to go home. That’s what we did. We didn’t train them to stay in the unit, they went home, and we got them home, we developed a very good home programme with lots of help from some very good people in the hospital, people in the works department and so on. We had a superb team andwe developed a home dialysis service. And only later did regular dialysis on the unit became even feasible, because we didn’t have the space.
J: So, does that would mean that a criterion for selecting patients for treatment was their potential to go home?
N: It was always for MRI and it was for Withington too, actually because Withington. There were not the facilities for hospital-based treatment until we started to develop Crumpsall and then we began to develop other settings including independent dialysis units where people went and dialysed with virtually no nurses, because we didn’t have the people to staff up regular dialysis. That was in the later part of my career Manchester.
J: I’d like to go back to the question of acute renal failure (not that we’re allowed to call it that anymore, it is acute kidney injury). Because that was your very early experience with dialysis. We have focused on chronic therapy. But how about the management of acute renal failure and interaction with other specialties, particularly with ICU? How did that all work?
N: That was quite dramatic. Because when ICU was set up, we were one of the leading players in it. I remember, when we did the first ICU, we had a big hand in how it was developed, because we had two or three independent cubicles, which were for us, acute renal failure. And we just went and did our thing. And gradually, they became more involved in what we were doing. And then of course, they became virtually totally involved, with circuits and so on. And so, I noticed that change occurring within my career that the onus in the intensive care unit shifted very much to the intensive care physicians and away from the renal physician. Whenever I went to ICU it was fine, but I’m not sure the younger consultant bephrologists were able to get the same involvement. And I suppose we were dealing with only part of multiorgan damage. Do you know, are nephrologists much welcomed on the intensive care units?
J: I think what you’re describing happens everywhere. And I think that in some places, it effectively happens that nephrologists have no input to the intensive care unit, except occasionally when asked: and that would most often be because somebody has got better but their kidneys haven’t. r occasionally, I guess for diagnostic dilemmas, but I’m not sure very often. So, it’s an interesting change. For me, one of the pleasures of nephrology was that one had complex chronic patients, but also very sick acute patients. And I slightly worry that the specialty will become less interesting or attractive if we’ve lost that.
N: Yes. I think it will. I mean, there was an inevitability about that, because of the technology available to intensive care. They’re now skilled in dealing with a multi system disease patient, which used to be a nephrology preserve, because you were the only people who dealt with people like that. So that change has been inevitable. Is it changing our specialty? Yes, it is. My own observation, I’m interested in your views, is that the challenges of the specialty seem to be flattened, rather. I mean, from the days when you had to develop dialysis, CAPD, transplantation, all the acute stuff – everything was challenging. I’m not quite sure where the challenges are for physicians coming in. Listening to these young consultants,they all have a subspecialty which they find interesting, but for the nephrologist in an academic unit, I’m just not sure what they’re going to see as their role.
J: I’m meant to be interviewing you, and now you’re interviewing me, which is fine!
I’m genuinely anxious about the future of the specialty. Because I went into nephrology, because there were incredibly sick people, both acute and chronic. Because it was intellectually stretching, I didn’t understand it properly. And because at the same time, you had the chronicity of the patient care which rooted you in reality and their lives, and our commitment to their lives in the wider sense. the kind of people we love. And now I see younger nephrologists some of whom don’t seem to want to go to the intensive care unit, or maybe aren’t even welcome; who seem content to do clinics full of people with what I regarded as rather unchallenging chronic kidney disease where essentially you’re modifying blood pressure and cholesterol treatment and blocking the renin-angiotensin system. And it all seems to me deeply unexciting. Perhaps I am just be harking back with pleasure to an era that the clinical group was small enough that you had to do everything.
N: One thing I noticed in those earlier years was that some of the best graduates around came into nephrology. And I notice that many of them now are going into cancer treatment because they have a sense of where the future is going. They’re probably now also moving into regenerative type diseases. Where the best graduates go is a bellwether, for where the intellectual challenges are.
J: And I think that’s probably right. But there’s no doubt that the current nephrology leaders looking at the recruitment numbers are very anxious. And one of the questions is, what’s the narrative you use to turn that around? Is it that we should be describing what you and I have just discussed: the sheer challenge, excitement, anxiety, and joy of being a nephrologist; that great combination of things which took you rushing to work in the morning. Maybe we can’t recreate that, or maybe we have to find a different narrative, which disappoints me in a way.
N: There is always in the kidney an intellectual challenge. It’s an intellectually challenging organ, how it goes wrong, and how you deal with it and how you deal with all the multisystem effects of kidney disease, I think will always be challenging, but getting the narrative, right, I suppose is, you know, that’s somebody else’s work.
J: Yes, I think it is it for those younger than us, I suspect. There’s an area we haven’t talked about, a bit more about how we are viewed from outside. And so, in the early days, or maybe even also later in your career. How were nephrologists viewed within the hospital, you’ve described some of the early tensions, but later on as a specialty developed will be still regarded as these odd people with spanners in our pockets or?
N: Frankly, I think it changed in in our hospital because we were seen to be successful. Some of the younger consultants in other specialties got it,and told us ‘what you’re doing is what you should be doing’. Whereas the older consultants had a hostility to us, and you could see that every now and then. I had some real clashes, terrible debates with, with the, when Sam Oleesky retired, and I took over the unit and did the general medicine as well as nephrology, and I had two senior registrars. All hell broke loose. ‘Who do you think you’re running a big medical service like that? You should be ‘down there’ (i.e. in the dialysis unit).’
We had a controversy once: a letter was sent to the hospital managers signed by 60 or 70 consultants objecting that I now controlled 70 odd beds in the hospital, and the service must be contained. I knew that we’d had previous agreement to what we were doingbut had to spend an hour and a half looking for the papers in a dusty attic, followed by a foiur hour meeting to defend our position. It was the clash between the old and the new.
J: The newer ones got it. The other thing I sense as you’re describing how you developed the specialty at MRI was that hospital managers, the chief executive and others were, in general, supportive? Now, why were they supportive? Because you’re big, you’re consuming a lot of resource. I might imagine that we’d they’d be rendered anxious by this large behemoth getting bigger and bigger.
N: Oh, they were. In the early days when we were developing, there were two or three of them, who as we are saying, got it and they understood what we were trying to do. And they were supportive. I had no office, for example, so they gave me an office. But the other people who supported us were the region. At that time, we had a regional authority. And both the chairman and the Regional Medical Officer were extremely supportive. They in a sense, ‘got it’. They covered my back, really, and they made sure that at least I got enough support to get started. And again, that was a matter of happenstance.
J: You described earlier the original committee chaired by Hugh de Wardener which you sat on as a youngster, which decided were dialysis services would go. But that was before the hepatitis epidemic?
N: Before. And it was all wonderful then because we had these 20 new units about to start. And then hepatitis hit just when the programme was starting, and it just stopped it stone dead in Manchester, for 18 months or two years. But the other thing was that the department then said, ‘We’re not doing anymore. We’ll honour our commitment to 20 units but we’re not doing anymore, because it’s too dangerous’.
J: And then what? I’m not sure personally of your involvement in this, but I suspect, quite a lot. What were the steps which lead from that difficult position to the gradual and relentless expansion of dialysis?
N: I was involved purely as a young consultant at MRI, persuading local people. Nationally I think Hugh had a very large part to play in that, Douglas a lesser part because he always had some scepticism about chronic dialysis. There was an unsigned editorial for the Lancet, which questioned long term dialysis, which we assume he wrote. I remember asking him and, put it this way, I don’t think he denied it. And he was a very good friend of the editor of the Lancet too, and he wrote very well. .
But Hugh pushed it enormously hard. And he was influential, because, of course, he was one of the few chairs of medicine. And he was in a big London hospital. And he made a lot of friends in Parliament and he used these contacts.
And the Department of Health was also caught by the fact there were people dying, and it looked bad. You know: ‘you can do something for these people, but you aren’t’. I remember the time when we some work in the north west on incidence. And then Mollie did some work in Northern Ireland, and Terry Feest in Exeter. We were looking at an incidence of 40 per million per year, and we published it.
And I remember going to the department with Mollie and David Kerr in I think 1987 and the minister was John Patten, an upper crust Tory minister, and he was a quite a nice man. And he sat in this room with us and his officials. And we gave him this evidence for 40 per million. ‘We’ve got the evidence, you know, Minister, we need this. People are dying in the streets’. And he said, ‘we will have the figure of 40 per million and he wrote it in, and it became departmental policy. So that’s how that eventually consolidated. And of course, once you got there, there was no stopping it.
J: So, that’s interesting, because in the end was data driven? It was your ability to gather local data as a forerunner of what the registry is now able to do.
N: Yes, That’s right. And because it came from different areas of the country, and it had been peer reviewed and published, he didn’t question it.
N: Yes, I remember we all collectively set this up and we all went in to talk to him. And I remember him saying ‘yes, I will do that’.
J: Apart from the actual development of dialysis and transplantation what else do you think have been the really big changes in nephrology, the therapeutic developments things which absolutely changed the game for patients?
N: I think the treatment of minimal change nephropathy was one of the first that only occurred in this period. Douglas and Geoffrey Rose, a statistician, did a short study on steroids for minimum change nephropathy, which showed it worked and they published it.
J: That was one of the very first randomised control trials almost ever published. Black and Rose.
N: Yes, and so that was a major step forward. And I think the understanding of renal biopsies, not just being able to do it, but understanding what they meant was very important too. These are the days where we were just beginning to separate off membranous from other glomerular diseases followed by all that work (some of which we did, of course) to define different groups and then look at their natural history.
I think there was also the beginning of trying to codify data, and make some sense of it. I think that nephrology led with that, partly because we were being pushed for the dialysis data. Including the ethos of doing it that way, saying, ‘Well, what are we really doing?’ You know, ‘what was the evidence’? I think that meant nephrology became an intellectual leader in the field doing this.
And then the use of immunosuppression drugs, which we were using in transplantation. Translating their use into other areas of nephrology, that was important. And the improvement in the technological analysis – human antibodies, complement system and all these things, you could begin to apply those back to immunological diseases of the kidney, I think they were quite important. And then understanding polycystic disease and the other genetically controlled diseases, that was an important field. And of course, behind all that was the blood pressure therapy and understanding about lipids. So, everything was new, and nearly everything related to the kidney in one way or another.
J: Any tricks we missed as a specialty? Any real step changes we might have made but did not? I just wondered with a retrospectoscope whether you have any thoughts on that?
N: I don’t think we missed anything big. I think we learned early on that we were forced into the pocket of government, because everything we did was costly. I think the need to produce data we did get hold of fairly quickly. And I think we developed that very well in many ways. Not only in Britain. So, I think that was that was good. I can’t really say I think we were slow on expanding the specialty. Though I think we let ourselves have too few nephrologists before we’d realised what was coming. And of course, once you missed it, you’re then fighting against the tide. So I think we should have seen much, much earlier that you needed more physicians doing this work.
J: At Kidney Research UK, there is concern about research workforce. The number of bright young people we lose because they don’t want to do nephrology. Or they come into nephrology, and we drown them with clinical work. And the older model that you can be a genuine clinician and a genuine researcher is almost disappearing.
N: That’s a loss. Such a real loss.
J: So, people like me, I spent maybe 70% of my time being a clinician and yet had real research time protected within the NHS. I think we’ve probably lost that, because of the way we work.
N: I think, if I may say so, you should choose your moment, because there will be ministers who will see that. Not all ministers are fools. And nor are all badly intended. I think most of them come into health, which they don’t like because they know so little about the field, they can’t grasp it. But most of them, when they come in, they’re very well motivated to help people. I think that’s what happened with John Patten. I’m not sure you wouldn’t get somewhere with Jeremy Hunt[1]. Where you to take a delegation to see him in private, talk with him about this, because you might just find something which appeals intellectual to him, which the profession would support.
J: I’m hopping back again because I remembered something. You made the point about the Douglas Black/ Geoffrey Rose paper being almost one of the first RCTs ever published. And another anxiety within nephrology research recently, which is very important for patients, has been our very low rate of randomised trials. We’ve been bad at developing them and bad at recruiting to them. And we compare badly to say cardiology, gastroenterology or perhaps best of all to haematology-oncology. For example a young doctor colleague of mine developed acute myeloblastic leukaemia. He sees the haematologist and he’s randomised into the current trial. There’s no question of him being treated differently because he’s a doctor; everyone who gets AML goes into a trial. In nephrology we have completely failed to develop that culture. Trials are not easy in nephrology, but even when they are, we’ve been bad at recruiting patients. Any thoughts on why?
N: In answer to your question, ‘why have you not been able to recruit?’ The answer is, I don’t know. A specialty like ours, which is fairly well into data collection. Why has that happened? I just don’t know. We have good examples, David Jayne and others in vasculitis trials, I’ve seen him present on that. But I just can’t understand why it is because we really, of all specialties, should be good at that.
J: I’ve got a pet theory. And it may, it may reflect back to how nephrologists self-select. I think that it in part relates to us regarding our patients as pet patients, of being slightly reluctant to randomise them into trials that could mean they receive our less preferred treatment. And also because trials are built on the principle of uncertainty aren’t they. And nephrologists don’t always like uncertainty. For example Peter Mathieson and others, including me, designed the UK membranous trial, which you remember was taking high risk cases and randomising to immunosuppressive therapy – either the Ponticelli regimen or cyclosporin. Before the trial began we questionnaired all the nephrologists in the UK, asking ‘would you recruit your patients into this protocol?’ Roughly speaking a third said they wouldn’t recruit because it was unethical to expose these patients to hazardous immunosuppression. A third said they wouldn’t recruit because it was unethical to withhold immunosuppression for those patients at risk of renal failure. And a third like me said, ‘We do not know what to do, so, we’ll do the trial’. And I wondered whether that combination of the best bits of nephrology, which is you love your patients individually, and you’re very committed to them, actually prevents you from recruiting.
N: But I’m not sure where that is so unique. Willlingness to recruit to trials means physicians are thinking very hard about their work, and seeking improvements. The traditions in oncology are so strong now that I don’t think they could be resisted. That’s the way you do it.
J: That’s right, the patient arrives through the door, there is a new diagnosis. And it’s almost impossible to avoid the patient being recruited. A bit like us being unable to let the patient out of the room without taking the blood pressure.
N: And of course, we are bloody minded individuals, I suppose.
J: I suppose that’s what I was hinting at that thinking back to the beginning of the specialty. That kind of determined, driven wish to change the world which characterised early nephrologists, isn’t necessarily conducive to uncertainty
N: No, it isn’t. There’s no doubt it would be very difficult. I think Douglas did it because he was authoritative. But I don’t think they should excuse our failure in doing trials, I think we should still keep at it.
J: Yes. But I think there is also a bit of the truth that when nephrology developed, a certain sort of person was needed. Because otherwise, you’d never get through those early challenges unless there were very striking individuals in the lead.
N: Yes, I think we’d all say we enjoyed breaking new ground and having to be fairly bloody minded to do it. I think that would probably apply to all the ones I can think of off the top of my head. Stewart Cameron at Guy’s. Tony Wing at St. Thomas’s was very determined, Hugh de Wardener at Charing Cross, Mollie McGeown in Belfast, John Goldsmith in Liverpool, Sandy Davison in Leeds. David Kerr in Newcastle was gentle, but very, very determined to succeed. He was probably I would say, the arbiter of taste for these things.
J: You clearly were very determined also, but I got a sense at the beginning of our discussions that you were very much on your own in Manchester, because of what happened? Was that a lonely position to be in? And how did you manage that?
N: Stuff them really, I suppose! I’ve looked back on that myself because I couldn’t understand it. I think I just got this sense that, my predecessors had developed this renal unit to be a great thing. Why should I let it drop? And for better or worse, that was the motivation. That’s what I’m going to do. And that was that really. And I suppose sticking it to them to some extent!
J: And you had no consultant colleagues, or very few at the beginning. I mean, how did you build up a team?
N: I was a single-handed consultant from 1969 through to 1976. And I think the first person who came was Steve Golby who didn’t stay, took himself off to Australia, came back the department here, but then I lost touch with him. But he was a very nice man, but not really wanting to do that kind of work. And then Peter Ackrill came and went off to Withington, to work with Tony Ralston. I had the thick end of 10 years really being the sole consultant.
J: And so, you very much were ploughing your own furrow early on? How supportive was the clinical team you were developing around you, nurses, and others? Or was it something that came later?
N: Well, I didn’t really have juniors to start with. When Bill Stanbury became head of department he gave me an SHO, that was it. And I remember going to Donald Longson who had half an SHO and half a registrar and I somehow did a swap, so I got a registrar. And that’s the way it was for quite a long time, actually. It meant you had to leave the registrar to do quite a lot of the work if you went away and you were never really away. And so, you were very dependent on the nurses because it was such a small team. So I think that helped develop the team because they knew they were needed, and they knew they needed you because you had the knowledge. That relationship developed very well. And then as new staff came in, luckily, there were staff on the whole who fitted with that sort of tradition.
J: I’ve really enjoyed the conversation. It must be 36 years since you recruited me to MRI to do research, and we’ve talked about things that I’ve not known about before today
Last Updated on April 8, 2023 by John Feehally