Patients didn’t blindly follow what either I said, or the rest of the team said. And I think we were decades ahead of the rest of the health service in that regard.
Robert Miller was a doctor who treated his first HIV patient in 1984 while still in training, He helped establish Broderip Ward at the Middlesex Hospital, a dedicated HIV ward, at the start of his career and was present when Princess Diana shook hands with a patient in front of the world’s media. His work in intensive care and critical illness combined with his interest in PCP, the pneumonia that occurred as a complication of HIV, led to career-long work with HIV patients and ground-breaking research in the area.
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At school I was always fascinated by science, but it was the influence of our knowledgeable family GP that led me to apply to medical school. Training at St George’s on Hyde Park Corner encompassed three clinical years on wards. Students rotated through different teams, or ‘firms’. I moved from University College Hospital to the London Chest Hospital, developing my knowledge of the chest side of critical care.
In late 1984, a middle-aged male with an odd story of progressive weight loss had been investigated for possible underlying cancer without any conclusive diagnosis. He was then admitted with pneumonia. With hindsight, it was the pneumonia PCP, a complication of the advanced immune deficiency associated with HIV. It would have been the first time I had, unknowingly, looked after somebody with HIV.
I specialised in intensive care medicine, working with critically-ill patients. By 1985, when I returned to UCL, I regularly met young men admitted with HIV and its complications. The leader in those early days was Tony Pinching. Mike Adler at the Middlesex had been instrumental in obtaining political support and funding, and Steve Semple was the professor of medicine and respiratory physician who said, in 1986, ‘We’ve got three different wards under five different teams, all with the same diagnosis – PCP. Wouldn’t it make sense that everybody was under one team?’
I moved to the Middlesex Hospital in March 1987, expecting to work full time on the intensive care unit. I was told, ‘While you’re doing that, keep an eye on this ward we’re just opening, Broderip.’ We started to admit people onto Broderip that month.
We didn’t just hit the ground running, we hit it racing.
Just days later, it was announced that a film crew would be following the team around. By the time Princess Diana came to officially open the ward, we’d established a team. There were dress rehearsals: who’d stand where, who’d be introduced to Diana, where the plaque would be placed. The smell of fresh paint filled the air. A decommissioned toilet adjacent to the ward was recommissioned with a brand new bowl, should the princess need to use the bathroom. The press were appropriately briefed. We changed patient names to protect identity. One patient was willing to be photographed if his face wasn’t shown. We set the scene in a side room, fixed camera angles and lighting, and invited approved photographers from main newspapers to stand looking through a window into the next cubicle.
We pulled the curtains to one side to reveal Diana, in full view, arm outstretched, shaking hands with the patient. It represented a specific agenda: it was safe to shake hands with somebody living with HIV. The iconic picture was syndicated worldwide, and the documentary, The Toughest Job in Medicine by Margaret Jay, was broadcast the evening of Diana’s visit.
I soon realised I had an amazing opportunity to practice medicine in a holistic way. We were being challenged by everything we didn’t know about HIV and its complications, particularly PCP. At the same time, we were in partnership with the people we were caring for. Sometimes they knew more about HIV than we did. I was like blotting paper trying to soak up every piece of HIV information I could. Each month, I’d wait for the American Journal of Respiratory of Critical Care Medicine to drop into the department. Whenever there was a conference in the States, I’d eagerly await the return of colleagues with the conference summary book listing presentations. I contacted fellow researchers via fax.
American colleagues, Walter Hughes and Peter Waltzer, had investigated PCP in the context of children receiving chemotherapy or radiotherapy who developed the infection. We knew the organism existed, but we couldn’t grow it. We didn’t really know how to treat it. And, most importantly, when we did successfully treat the pneumonia, we didn’t know how to stop it coming back.
I got a phone call one day from colleagues in Oxford. Would it be possible, with ethics committee approval, to send them some samples – lung washings – from the patients I was clinically investigating? I went to Oxford to meet them and discovered that they’d developed DNA techniques to diagnose the infection. It was like putting paraffin on the bonfire of my intellectual flames. I’ve maintained that interest in PCP ever since.
We set up a London network, meeting regularly at the Royal Society of Medicine, where colleagues from King’s College Hospital, Chelsea and Westminster, Royal Free, James Pringle House, would meet with the express aim of sharing clinical experience. Brian Gazzard at Chelsea and Westminster was the go-to person for comment, critique, and advice. We began to standardise approaches, ensuring everybody got the best treatment that we knew existed.
At any given time on that 12-bedded ward, there’d be 2-3 patients with PCP and some with the terrible skin condition, Kaposi sarcoma. These young men stayed for up to three weeks. They’d return 2-3 months later with the same problem, or another complication, returning much weaker than they’d left the previous admission.
PCP makes you breathless. You can’t walk around. Your oxygen levels drop. You’re drowning in your own inflammation. The body is desperately trying to kill the pneumocystis, but it can’t. The lung slowly fills up with secretions, blocking off more and more of the air sacs, so it’s less able to maintain gas exchange. Eventually you get the condition ‘respiratory failure’ where you require an oxygen mask, or assistive ventilation. Don Smith and Brian Gazzard at Chelsea and Westminster were investigating whether PCP could be diagnosed earlier. They realised that a healthy person kept oxygen levels up while exercising, using the reserve in their lungs. If you’ve got early PCP, however, if you exercise, your oxygen levels fall, known as ‘exercise induced desaturation.’ They used an exercise bike at the Kobler Clinic as an early screening tool to choose who to bring in for bronchoscopy, rather than waiting for the patient to become ill 2-3 weeks later, and arrive through casualty.
The number of people needing bronchoscopy was increasing, so colleagues used induced sputum, a technique where patients breathed in salty water causing them to cough and splutter until they eventually coughed out deep phlegm. We did a study where everybody agreed to an induced sputum, and then within a couple of days had a bronchoscopy, regardless of what the induced sputum result was. Nobody preferred the induced sputum which reinforced the superiority of the bronchoscopy. Of course, the other angle was patient involvement. It’s important to know what the person having the procedures thinks, not just the doctor. We were decades ahead of the rest of the health service in that regard. We wanted the patient to know as much as we did, perhaps not in the same vocabulary and jargon as we would use between doctors and nurses, but in unambiguous plain language.
Because, before 1989, if you were diagnosed with PCP there was an inevitability. You now had AIDS, with all the emotional stigma that accompanied it. There was community knowledge that once you only had a couple of years of life left. From conversations I had then with my patients, it was a terrifying diagnosis to be given.
My darkest moment was having to tell the parents of a young man, who’d been in repeatedly with PCP, getting better, going home, and then relapsing, that he was now dying. Historically, doctors hadn’t been good at communicating. But the more ill a patient is, the more important it is that your communication is on target. I used the phrase, ‘We’ve passed the end of the beginning. This is the beginning of the end’. It accurately portrayed what none of us had verbalised until that point. There was raw emotion. A wail. A scream. Afterwards, the patient thanked me for being brave, a remarkable thing to say. It helped him and his parents to focus on what was important to them: spending as much time together before he died.
The Medical Research Council had given money to install an MR scanner. We had the luxury of being able to fast-track investigations. If you presented with a headache and confusion, conventionally you’d have a CT scan – a good way of identifying cancer in the brain or a bleed or stroke. But not as good as the MR scan which shows the subtleties that co-exist with underlying HIV. Early MR saved time and helped us come to a firm diagnosis more quickly.
We began to get a handle on lymphocyte count, CD4 count. The lower it was, the more likely a patient would get PCP. Because it had been reported in children, we assumed that everybody got infected when they were young, then the immune system kicked in, knocked off the PCP, but lingered to reactivate once a person got run down. There was no concern that it was something that was infectious to other people.
With the advent of antiretrovirals, AZT and then combinations DDI, DDC and then 3TC, we waited until people became unwell, or until their CD4 count fell, because we knew we had a limited window of benefit:if we started them too soon, their effect would dissipate. By 1989 there’d been several clinical developments which meant that we were much better at treating PCP. We knew we didn’t need to give just antibiotics, we needed to give steroids to calm down the lung inflammation. Survival was dramatically improved. We’d also started using prophylaxis after the episode of PCP, to stop it returning. Combinations of antiretroviral drugs were much better in the medium term at controlling HIV for some people. It became less of death-sentence.
Next to Broderip ward was a lecture theatre. On Tuesdays we’d hold a big team meeting with lab teams, colleagues from James Pringle House , the(the outpatient genitourinary medicine/HIV clinic) GE service:, psychologists, social workers and nurses. With the doors shut, we’d discuss details of each patient, looking at scans, x-rays, blood tests to agree on the best way forward for individual treatment. On Wednesday lunchtimes, the whole hospital crammed in there for ‘Grand Round’. Each team would take it in turns to present a difficult clinical case. I’d teach there on a Thursday. But the rest of the time it was underused. It had a low stage at one end, and it was requisitioned for the Christmas party. The room would be stripped of chairs. They’d be piled high in the corridor, breaching fire regulations, I’m sure. A sound system would appear.
And then we’d have the most shocking, risqué cabaret, outside of Taboo, in London.
Patients would be alongside former patients, relatives, friends, professionals and entertainers. It was a marvellous time that brought home to me that we were privileged to be looking after human beings – people. Not patients, not cases, but people.
We opened Charles Bell ward in the early nineties because we needed the capacity. The two wards were on opposite sides of the corridor, so the team could move between the two sites.
By mid-1996, saquinavirsaquinavir, the first protease inhibitor, was licensed for use and we were into combination therapies. In November 1996 we admitted a young man with severe PCP. He ended up in ICU, requiring ventilation. And he recovered. After he finished his PCP treatment, he began antiretroviral therapy with saquinovirsaquinavir. I bumped into him in 2020, still alive and well. He was the first person I saw the game-changer treatment have an effect on.
The hospital closed in 2006 and we moved to Patrick Manson ward, UCH, merging with the Tropical Diseases ward at from the St Pancras Hospital site. For the first time we had a unique unit with expertise from the HIV side and the infectious diseases side. We shared training opportunities and learnt from each other yet again.
People think about living with HIV today in a historical context, still associating it with emotive statements made by the broadsheets and tabloids 25 or 30 years ago. Yet, living with HIV today is an entirely normal life. But the pattern of illness has evolved beyond recognition. The complexity of investigation and availability of treatments is far greater than it was 30 years ago. Every hospital admission we avoid is a success story.