Choose life - Dr Roy Robertson, the front line of harm reduction

Roy Robertson, Professor of Addiction Medicine at the University of Edinburgh, sometime government advisor and the Queen’s physician in Scotland, doesn’t always stick to the rules.

As a GP in Edinburgh’s Muirhouse for almost 40 years, he first started to see the collateral damage of heroin abuse when teenagers turned up at his clinic in the early 1980s, jaundiced and with needle tracks in their arms. They were getting ill and didn’t know why.

This was the beginning of the capital city’s heroin epidemic and the precursor to the spread of HIV which saw Edinburgh dubbed as the AIDS capital of the world. And, while the country engaged in moralising and government scare tactics, Robertson just got on with his job as a doctor, dealing with the immediate health needs of his patients – drug addicts or not. 

“They were just young kids, just out of school, and didn’t even think they were injecting heroin, just something they called ‘smack’”, says Robertson. ¶  “Actually, the first case I remember seeing was just before I moved to Muirhouse, it was in the Northern General which is now sadly gone, and it was a young woman who was in for a respiratory problem. She had pneumonia, quite common in young people, but she confided in me that she was using heroin and she showed me injection sites and gosh, I was shocked. Here was an attractive young woman damaging herself in that way, it just seemed really awful.  

“You could tell she was having withdrawal symptoms and while she’d technically recovered from her actual illness, she wasn’t obviously better. She was distressed, she was agitated, she was sweating, and it was obvious that she was suffering withdrawal symptoms, so the cure was to solve her withdrawal symptoms.

“I spoke with my colleagues about what do we do about it and they said give her some heroin and get her out of here, so we did. That was extraordinary, really, because it was illegal in the sense that we didn’t have a license to prescribe heroin and it wasn’t indicated for her medical condition, but we gave her some, she injected it, and she buzzed off. 

“It was pretty ropey medicine, really, but you know, I could see what needed to be done. I just assumed that she would get better somehow and in my mind, I thought she’d stop taking heroin because she wasn’t daft.

“Then within weeks, I suppose, or months maybe, we started seeing more cases coming into the surgery, young people again, very young people, 16, 17, 18, 19-year-old boys and girls with obviously injecting-related problems and it really was an interesting time because they were just normal kids from that area, and they didn’t have a track record of being alternative lifestyle sort of people in the sense of new age or anything – which is where traditionally heroin users were found.

“In fact, if you spoke to the drug squad at the time, they said there were probably about 50 heroin users in Edinburgh, and they knew most of them. They were sort of hippie types, alternative lifestyle types; smoked a bit of cannabis, used a bit of heroin, were in and out of trouble, but not serious trouble. They were a range of students, ex-students, youngish people, mainly, and they were known to the authorities, and they were known to the treatment services.

“There was a famous paper published in the 1970s, The first 100 heroin users in Scotland, which gave you a scale of the problem, it was very small, 100 users in the whole of Scotland, and published by the psychiatrist who had a lot of them in treatment.

“The legacy of the 1960s was that treatment clinics had been set up throughout the UK, and there was one in Edinburgh at the Royal Edinburgh, one in Glasgow, and they provided a treatment clinic service for people with opiate disorders. They got methadone in the main, but it was small scale, controlled and there wasn’t this sort of urgency or pressure from anywhere to do very much, they were just there, being managed and basically beneath the radar.

Reducing the harm

“That all changed in an instant and it was due to things pretty well outwith anybody’s control, really. Global changes, like the fall-out from the Iranian revolution and other changes in that part of the world, meant that the type of heroin that flooded into western Europe was different from the Chinese heroin that was largely injectable. Our heroin was smokable so there was a rise in heroin smoking in the UK and in other parts of Europe, but in Edinburgh for some reason, there was a rapid increase in injecting, and nobody is terribly clear why that was. 

“There were people injecting in Liverpool, they were injecting in London of course, but Edinburgh went for injecting in a big way and almost all the heroin we saw at that stage was injectable and people were using it three, four, five or six times a day. These were young people who had no idea of what heroin was, they said it was smack, and it was largely a local phenomenon which was basically passed round the estate.”

Robertson paints a bleak picture of Muirhouse in the early 1980s which was one replicated in inner city housing estates across Britain. These were the Thatcher years. A decade defined by the ‘haves and the have-nots’. Years marked by the divide between the ‘loads of money’ yuppies and those at the sharp end of rising unemployment, benefit cuts, inner-city riots, the miners’ strikes, and increasing deprivation coupled with public service cutbacks. 

Robertson says there was a 30 per cent funding cut to social work the year he started practising in Muirhouse and, he says, GPs felt they were simply “firefighting”, dealing, largely, with the symptoms of poverty. And amid that febrile atmosphere, the growth in heroin addiction wasn’t fully recognised until people started getting ill and the rise in cases of jaundice was the first warning sign that something was seriously wrong.

“The drugs squad was pretty ineffective at the time, but it was capturing people, taking them to court and charging them with supplying heroin.People were being sent to jail for years because they had a couple of grams of heroin, there were huge injustices. 

“We didn’t really know what our role was because there was now this crossover between us and social work, housing, the courts and the law, and some of the partners were really unhappy about it because it was seen as non-medical stuff. 

“But then, all of a sudden, people were coming in with acute hepatitis or acutely jaundiced, they had abscesses on their arms and legs, and we had sudden deaths. I spent loads of time up in the mortuary up here on the High Street just identifying bodies and saying, that’s so and so and the pathologist at the time wouldn’t even do a post-mortem, and would say, it’s just another kid on heroin. Quite an astonishing attitude towards it, really. 

“However, I wouldn’t criticise people too much because it was all new for everybody. No one knew quite how to handle it.

"The police would phone me up and say, we’ve got a young man dead in his flat in Muirhouse and it’s a heroin overdose, can you come and certify the death? I’d ask whether the pathologist and the forensic team were there, and they’d say there was no point because it was just one of my heroin users. I’d ask them to look at the body and tell me what they saw. They’d say, ‘it’s so and so, he’s 21, he’s here, he’s covered with blood, he’s naked and he’s in the flat and he’s dead and it’s a pretty straightforward case’. I’d say it doesn’t sound straightforward and that they should phone the procurator fiscal and organise a post-mortem because I wouldn’t just give out a death certificate. But inevitably, the body would just turn up in the mortuary and someone would just certify the death and mark it down as another heroin overdose. People didn’t really care much for drug users then or the reasons they were dying.

“But we knew there was some kind of medical problem emerging and that we weren’t doing very well. I wrote a letter to the Superintendent of the Royal Edinburgh Hospital saying there was a major issue going on in Muirhouse and that I thought this group of drug users were at risk of maybe getting something like this new AIDS virus which we’d heard about from America. He didn’t write back.

"That was the irritating thing, people, when they don’t want to expose themselves, they don’t write, they phone you and they say you’re being hysterical. He said this was all hyperbole and that by the way, he was going to close down the methadone clinic at the Royal Edinburgh anyway because it had been running since 1966 and the users were no longer the psychiatric patients that the staff were trained to deal with. People were coming from Glasgow and coming from London to get methadone.

"So, the methadone clinic was closed down and while we howled with anger, they just abandoned this group of about 50 patients, these poor chaps who had been on methadone treatment for 10, 20 years, they just were on the street, a lot of them went back to using heroin, a lot of them died, some of them came to us. 

“The next thing that happened was in 1985, the test for HIV became available and there were some tests done on blood samples taken from A&E, basically, just to test this new kit out. They all came back positive which no one had really expected. Even then, though, no one was really thinking about HIV and drug users – it had largely been seen as an issue within the gay community – or had a handle on the incubation period or the fact that once you contract the virus, once it’s transmitted, it might be 10 years before you develop symptoms, so when we were seeing cases in New York in 1980, they got infected in 1970 and nobody realised that because there had been no test available. We weren’t yet seeing any cases but we started to understand the risks.”

Robertson is one of the most self-effacing men I have ever met. He has spent almost his entire medical career on the frontline dealing with Edinburgh’s heroin problems as a local GP. And it is indisputably because of his close and ground-breaking work with heroin users in Muirhouse, the trust he had built up among them, and his understanding of their particular drugs’ culture, that the link between intravenous drug use, the sharing of needles and the transmission of HIV was first identified. By him.

“Looking back, yes, we did warn that HIV would happen, although we were trying to just raise the stakes and frighten people. When it did happen, we were taken as much by surprise as everyone. And maybe it was a bit unorthodox, but we basically went back and tested lots of our patients’ blood samples without permission and while that wasn’t unthinkable then, by today’s standards, you wouldn’t be allowed to do it. We found them all to be positive and we had this horrible situation where we knew that we’d got all these positive results and all these patients who didn’t know they’d got HIV.”

What did you do?

“We went and told them.

“People had no idea what HIV was. That was ‘86. It was ’85 that the test became available, September ‘85, that was the year of the test, everybody got tested, and our cluster was at the epicentre of something really big.”

“After we had a piece published in the British Medical Journal in 1986 and the link between drug use and HIV was more widely understood, everyone from government people to Playboy magazine turned up in Muirhouse. We had about 50 TV companies arrive over a few months and journalists from all over the world on our doorstep. Everybody wanted to know what was happening here.”

And beyond the emerging story of a public health epidemic of terrifying proportions –Edinburgh was home to seven out of 10 of Scotland’s AIDS cases – was the story of a city experiencing a bewildering combination of public ignorance and a hungry news industry craving a headline. With more than three out of every five of those cases accounted for by intravenous drug users, Muirhouse was caught in the headlights, with tabloid journalists and camera crews hoping to capture deathbed tableaux of the first tragedies of AIDS. And as rumours circulated of addicts being paid to inject on camera, all the worst excesses of a salivating media fuelling a moral panic were on display.

I had just started my traineeship as a journalist on a newspaper in Wester Hailes, another sprawling housing estate on the other side of Edinburgh that was experiencing very similar problems to Muirhouse. I met Robertson then as we were both charting, in our very different ways, the progression of a disease that everyone was trying to understand. It’s fair to say that those years and those estates helped shape us both.

Everyone was trying to get to grips with what felt like a nightmare. And among those who wanted to chronicle history was the polemicist, William Rees-Mogg, Jacob’s father and former editor of the Times. He arrived in Muirhouse to write a piece for the Independent. Robertson picked him up in his Ford Escort and drove him down to the estate which others had described as like being ‘on the other side of the world’ when contrasted with the gentility of Edinburgh’s New Town.

“He was a big guy, massive guy, and like his son, was eccentric as well. He was wearing a cloak, a long tweed cloak and he had a big hat, a fedora on, and could hardly fit in my car. He asked if we could go to a patient’s house and we went into this flat in one of these derelict stairs where we were stepping over the dog mess and so on. We went into this house and there were no chairs, just bean bags and people, all drug users, sitting around.

"So, there’s this massive guy in his cloak and hat, sunk in this bean bag, looking not at all comfortable, and saying, ‘I hear you’ve got HIV infection, can you chaps tell me what it’s like?’ This kid just looked at me and said, ‘what the fuck is he saying?’ I said, he wants to know about your AIDS, tell him about your injecting, and he’s like, ‘oh, I just jag up, and I get this jaundice and I get yellow and all my pals have got it’.

"Rees-Mogg was asking me to basically translate. He couldn’t understand them and they couldn’t understand him but you know, he wrote a really good piece about heterosexual transmission. I’d asked him to look around that room; seven kids, all between 18 and 25, all injecting drugs, sharing needles and all with boyfriends and girlfriends. The question was, what is going to happen next? And that’s what he then wrote that we’re going to have a heterosexual epidemic, it’s going to go African, and that was of course what lit the blue touch paper.

“That really was the game changer. Norman Fowler, then health secretary, went to San Francisco to see what was happening there, and basically came back and told Thatcher that things had to change in terms of educating the public. This was no longer ‘someone else’s problem’, it was all of ours.”

And as the wheels of government started to move and politicians tried to catch up, Robertson, who in and around his normal GP duties was conducting a follow-up study with patients who had been first diagnosed with HIV, was called upon to give evidence at various Westminster committees.

“I was invited to speak to the House of Lords but while I was in London, I used the opportunity to try and find one of our original patients. I went to Brixton to this address I had been given, which turned out to be wrong, but they knew her and invited me in. Everybody was sitting around smoking cannabis, the room was thick with it, and one of them said, if you give me a minute, I will take you to see her, and he threw this helmet at me. I got on his motorbike and we whizzed through London to this hospital and he said, I’ll distract the nurses ‘cause they won’t want you going in, they don’t like having visitors because she’s got AIDS. Do you know she’s got AIDS? And I said, yes, I know.

"He distracted the nurses and I went in to see Morag, who was clearly pretty much near the end. I asked her if I could take a blood sample for our follow-up study and she agreed. I put it in my bag, sneaked out and got on the back of the motorbike and the bloke dropped me off at Westminster. I went into the House of Lords and got seated at this big table in this committee room and gave evidence on HIV infection, knowing that I was sitting with this blood sample in my bag. Ridiculous, really, but when you look back at that time, it was just a rollercoaster of just amazingly funny, ridiculous and interesting events. And, of course, tragedy. Morag died shortly thereafter, one of many.”

The tragedy of that time was famously captured by Irvine Welsh, who had been caught up himself in Edinburgh’s heroin epidemic of the 1980s, and who used his personal experience, along with what he had read of Robertson’s work, to feed into his seminal novel, Trainspotting, which was published in 1993.

And while some criticised his work for glamourising heroin addiction, Robertson, who met Welsh when the book was first published, said it was “a breakthrough in terms of public awareness”.

“I didn’t find it shocking at all. I felt it was day-to-day stuff, this was exactly what we were seeing at the time, so it wasn’t shocking. In fact, some of our drug users said it was pretty matter of fact, they recognised the characters, they recognised that spectrum of activity and they wondered if they’d been based on them or their friends and they can see, so I think it was great, and the film was even better because it brought in a bigger audience. It was vivid and portrayed the horror of it all.”

Thirty years on, it is fair to say that the horror continues. HIV may no longer be a death sentence and advances such as Prep may now make it a preventable disease but that is still largely restricted to the gay community who have taken it up in a way that drug users have not. They remain a marginalised group and controversy continues to rage about the right approach to dealing with them.

Robertson is currently working on a report that follows his original cohort of drug users 30 years on, which will be published next year. His previous studies have shown that one in four had died, almost entirely for reasons linked to long-term drug use, and others were suffering from the effects of hepatitis C and liver and lung disease. One in three was still injecting heroin and two-thirds were on methadone. Less than one in five had come off drugs and of the survivors, most were living in social housing, on benefits or working in low paid jobs.

After decades of being immersed in the multi-layered issues relating to drug addiction, Robertson has been frustrated by government responses. He has, among other things, recently criticised politicians for not backing the idea of safe injecting rooms. 

“Everybody is looking for a treatment, a cure. But it’s absolutely clear in my mind that we need to apply basic principles to a condition that is not unusual.

"Throughout history, people have been addicted to things and people have suffered the consequences. Everybody has experience of family who have got alcohol problems, for instance, but I think we have a difficulty in recognising that some conditions don’t respond to a short-term treatment and that we’re really just managing symptoms rather than curing them.

"In many cases, drug use is a temporary phase and spontaneous recovery is common. For a minority, however, dependency on a drug, or more than one drug, is an enduring condition with ongoing and cumulative risks. In this group, the number of actual cures are quite small.

“We apply that basic principle, of preventing the most damaging consequences, to a lot of conditions such as diabetes, dementia or hypertension, where we’re managing symptoms and simply trying to mitigate the bad effects. It’s just that what we are talking about in this case is a condition with an illegal status, and serious stigmatisation. Drug users are marginalised and the most serious drug problems are associated with poverty and deprivation.

“I think managing addiction is like any chronic disease management, it’s a condition some people have to live with, and it is something caring services can help with. There are ways of intervening helpfully and there are a lot of resources to draw on, but the problem may not go away and that is difficult for individuals, their families and society to accept.”