This recording was made at the Drugs Research Network Scotland annual conference in 2017.  The following transcript has been made of Roy Robertsons keynote which includes some photo-restorations of some slides, reconstructions of others, inclusion of original source materials where possible, and where not, similar resources illustrating the points being made.

 

 

Due to the filming conditions being challenging on the day, the colour of the video has been bleached. Thanks go to Prof Robertson for giving permission to film and reproduce this work.

 

 

Introduction

Tessa and Katrina persuaded me to talk about research and policy initiatives that made a difference and gave me the opportunity to go back a bit. This is just some declarations which you can see later on if you want to. So I thought I’d talk about various things.

 

 

 

 

 

 

Clinical Research

I thought I would talk about clinical research – about clinical practice, because, I mean, I’m a GP; I’ve been a GP for nearly 40 years in Muir House in Edinburgh. My experience and my driving force is patients—is what people say to you—and I think that’s true for all of you. Certainly, the discussions that have been going on over the last couple of years around the new strategy have been all about patient empowerment, listening to people, and developing policies that are appropriate for people in communities, and things like that. So that’s where I come from, and I’m going to start off on that.

 

 

 

 

Pragmatic Research

Then I’m going on to what I call pragmatic research. Pragmatic is a word that the Dutch use very frequently when they mean it’s just an action—it’s something doing stuff. You build it; you call it research, but actually, it’s very motivated by actions, which is great. Then I’ll talk about research projects that others have done, of course, from national policy.

 

 

Case Studies and Patient Experiences

 

 

 

I hope you can see some of these slides at the back, and you probably can’t read the text, but don’t worry about that; I’ll explain. This is the sort of thing that we see in the surgery—the sort of cases that we see.

 

 

 

 

This is not very clear from the back, I’m sure, but this is a young woman covered with injection sites, not only in her hands but in her groin and on her arms and all over the place. You know, a 20-year-old female—it’s been really distressing for her, but also distressing to see cases like this coming into your surgery, people desperately needing help.

 

 

 

 

And older guys with these femoral vein injection sites—I mean, this chap can inject in the dark. He can inject heroin in the middle of the night in the dark without even looking because he’s got a sinus tract going into his femoral vein. I mean, a very powerful indicator of long-term drug use.

 

 

 

 

And Ethylphenidate injections this ghastly drug that we saw in 2014 that caused a lot of problems and some deaths and amputations. People walked into the surgery with things like this frequently, and they do still to this day.

 

 

 

 

 

 

Some of these have healed up; some of them got better.

 

 

 

 

Desperate injection sites. You know, you think, “Why were you injecting your foot if you weren’t pretty desperate?”

 

 

 

And clear examples of self-neglect—you know, youngish women looking like that. I mean, completely neglecting herself.

 

 

 

 

And then, of course, all the other things that we see. We see hepatitis; this is just to indicate the topic of hepatitis C. Hepatitis is something we see. We see new cases. We don’t often see seroconversion illnesses, but we see new cases. We get new positive tests still, and we have a caseload of people untreated still. And, of course, our historic baggage of HIV in Edinburgh, which still rumbles on to this day.

 

 

Hepatitis C Prevalence in PWIDs (People Who Inject Drugs) Europe 2008-9

 

 

 

 

Indicators of Distress

I’ll come back to this in a minute, but these are powerful indicators of distress and problems in the community, and these drive policy, I think, more than almost anything else. Of course, the AIDS crisis was all about communities; it wasn’t just about people injecting drugs.

 

 

 

 

 

It wasn’t just about a bunch of trainspotting-style kids; this was about communities—children with AIDS. We had several children in our practice who had AIDS, one or two died, so it was spreading out, and that’s what energized policy, of course.

 

 

 

 

 

Complex Health Cases

And big numbers coming up…This you won’t be able to read from the back, and it doesn’t matter because it’s just a list. I mean, this is a case from my practice, just chosen, not at random, but just a drug user—a 46-year-old man with a list of really serious health problems ranging from injecting drugs and long-standing methadone treatment to anthrax.

 

 

 

 

He had anthrax and recovered from anthrax from injecting. He had pulmonary embolus, pulmonary infarcts; he’s got left ventricular dysfunction; he’s got heart disease; he’s got epilepsy, and he’s got a whole lot of medications at the bottom there that we’re prescribing for him—really complex cases.

 

 

 

 

And here’s a lady, a 50-year-old lady, who actually presented on the day with the bottom topic, which you won’t be able to see in the back. It is for hormone replacement therapy; she’s menopausal, and that was her presenting symptom. You know, you sort of say, “Well, hold on a minute; by the way, you’ve got all these other problems we need to treat first.” Untreated hepatitis C, still injecting cocaine and heroin, alcohol problems, you know, recent pulmonary infections—very complex cases.

 

 

Patient Perspectives

Again, you won’t be able to see this; this is just meant to illustrate patients’ perspectives. These bubbles are quotes, and this is from the national forum on drug-related deaths when we had that wonderful volunteers forum which helped us out and told us, you know, gave us feedback from people who were using drugs, and the quotes here are terrible.

 

 

 

 

They really are awful. They say doctors don’t like them; they say they can’t treat them; they call them irresponsible; they stigmatize them. I mean, these are straightforward from patients.

 

 

 

 

And they cut down your methadone, so you’ve taken some heroin, your toxicology is positive, and your methadone gets cut, or you get told to go away and come back and work on your motivation. I mean, really, really terrible…

 

 

Doctors’ Perspectives

This next slide, again, you won’t be able to see it, but this is the doctors’ perspectives, and this is taken from a group of doctors who didn’t actually treat drug users. The reasons they didn’t is because they said they were difficult, they were problematic, they lied, cheated; they didn’t turn up for appointments; they were untreatable; it was a specialist issue.

 

 

 

 

One quote is, “Well, we don’t have any in our practice,” and I thought, “Well, I bet you don’t.”

 

 

 

 

And so… Prescribing—the history of prescribing is complicated, and I think it is important to remember we prescribe a lot of stuff that causes harm and causes risks. Certainly, we don’t do it with the intention of causing harm, but it’s risky stuff.

 

 

We’re in difficult territory, prescribing controlled drugs in big doses to people who are not the best judges and not well-controlled; it is dangerous.

 

 

Drug Interactions and Risks

We have this list of drugs, and some of them in red are drugs that have been taken out of the pharmacopoeia because of frank, really excessive abuse, like Triazolam and Thioridazine. The trouble is all these drugs interact with each other, so you prescribe six different drugs to a patient, and they all cause cardiac side effects. So the complications are enormous.

 

 

 

 

Changing Demographics in Drug Use

I put this up just to move on to the next sort of topic. I mean, this is Irvine Welsh’s fantastic story which we all learned an awful lot from, but this was in The Guardian a couple of years ago. It was there to illustrate that this isn’t what’s happening now. What we’re seeing now is an older group of drug users, and of course, these figures are very familiar to all of you, causing concern.

 

 

 

 

This slide is slightly out of date; in 2016, the 2018 figures are really illustrating what I hope to illustrate—that drug deaths have overtaken alcohol deaths for the first time this year. Um, and so we’ve got a real problem here, and as the minister says, this is what we’re trying to address.

 

 

 

 

 

 

Edinburgh Addiction Cohort Study

Now, this is just my own cohort study—the Edinburgh Addiction Cohort—which is a group of 800 patients registered with my practice. You can see this trend line shows the trend in drug-related deaths, and the blue columns—the very high blue column in the 1990s—is all about HIV, which largely went away in terms of death.

 

 

 

 

 

 

But the conference in Lisbon recently, which some of you were at, really highlighted, and this was slide taken from Louisa Degenhardt, another meta-analysis of lots of data from around the world. I’m just showing that actually, poisoning—that left-hand block—is 32% of all drug-related deaths.

 

 

 

 

If you add in other stuff like other non-communicable diseases, that tops 13%. HIV and all these other causes are drug-related deaths. We really have more than 3,000 drug-related deaths, probably in Scotland, per year. So this is just the tip of some sort of iceberg.

 

 

 

 

Research on Treatment Efficacy

 

So moving on to my pragmatic research—well, this was our prescribing problem. We prescribed a lot of dihydrocodeine in the early 1980s because methadone was sort of beneath the radar. It wasn’t approved of; it wasn’t in the national guidelines for long-term use, and we kind of got drawn into it, and we got criticized heavily, of course, by colleagues and by the Home Office.

 

 

 

 

We used to get regular visits by the inspectorate, and they said we had to stop prescribing dihydrocodeine. So we thought we’d do a trial, and we did a trial, and we recruited 235 patients, and we followed them up for 42 months—94% follow-up rate.

 

 

 

 

Now, I don’t believe anybody could beat that at four years—nearly four years to have 94% follow-up. So it showed retention in treatment; that was the first thing it showed. But it also showed no difference in other various outcomes between that and methadone treatment. So here was our justification for continuing to prescribe an alternative to methadone.

 

 

Adverse Childhood Experiences

Going along with that, our research with Jo Kimber from New South Wales on childhood exposure—adverse childhood experiences is a huge topic, of course—and we identified that in 2010 and published that in the BMJ. Drug-related deaths—or this is about injection cessation. So what we wanted to do in this study is study whether or not people stopped injecting.

 

 

 

 

 

 

Drug related deaths… So this was particularly about injecting cessation; it wasn’t about stopping using drugs because people just don’t stop using drugs so easily. But we showed that with treatment, and the blue curve there is no treatment, and the top curve there is five years plus treatment, you’re much more likely to stop injecting drugs. And the same happened for deaths; you were much more likely to die if you didn’t get treatment.

 

 

 

 

 

 

This is over a time period of several years, so being out of treatment is a huge risk factor for death.

 

 

 

 

 

 

Historical Context of Drug Research

So moving on to research projects—well, most of what we know, or a lot of what we know about drugs, comes from historic information. The famous Lexington experience. This really was not set in stone—but it gave us our knowledge of what happens to drug users, and this was Lexington prison in Kentucky, which was set up in 1935 and ran for 40 years. The prospect of the project was designed to find out why people use drugs, find an enduring treatment, and cure them.

 

 

 

 

 

This was a Therapy Farm in custody, and a lot of the treatments were, by today’s standards, unethical and rather dubious and not terribly effective. The whole project was deemed to be not effective, and 90%—as it says at the bottom there— started using drugs again as soon as they were released. But the follow-up study in New York, twenty years later, was really interesting. So, twenty years follow-up on this cohort of people who’d been incarcerated—many of whom were jazz musicians—were people from theater and a different group from our group.

 

 

 

 

 

 

But the follow-up study, 20 years on—in red there—showed that 23% had died, so quite a large percentage had died, and 25% were still known to be using drugs. But a large percentage were in some sort of controlled abstinence state. So here we are with the early research showing some really useful findings which resonate down the years.

 

 

We still have, I guess, a lot of findings that are very similar. After a long period of time, a lot of people stop using; a lot of people continue to use; a lot are dead. So this is a snapshot of what we can expect to see.

 

 

Natural History of Drug Dependency

So, the natural history of drug dependency—and I won’t go through this—but at the top there I’ve put a very important general rule: the majority of people who use drugs come to very little harm, and I think we tend to forget that. I mean, we tend to see those people that I showed you the photographs of at the beginning—these are the people that come to harm.

 

 

 

There is a big group of people—maybe 10% of all drug users—who come to some sort of significant harm. So really what we’re talking about in clinical practice is the people that come to harm, but the majority of people actually probably don’t come to a lot of harm. Or it’s temporary or they get over it, sort of thing.

 

 

 

 

Treatment Efficacy Over Time

I’m back on treatment. I mean, this is Rosie Cornish and Matthew Hickman’s famous study on the efficacy of treatment in preventing deaths. The important message from this, it’s a delightfully simple slide. This shows that over time—and the bottom axis is weeks, 100 weeks—over time, the chances of dying from opioid substitute treatment gets less and less.

 

 

 

The protective value of drug-related treatment increases as the year goes on, and it doesn’t plateau until about a year. The first few months are risky; methadone treatment, particularly onset of methadone treatment, is associated with an increased risk, but as time goes on, the risk is less and less. But it’s long-term treatment again.

 

 

 

 

Drug Harms and Community Impact

David Nutt’s famous paper on the harms caused by drugs—showing all these different drugs, and you can’t read them, but cannabis and mushrooms and LSD and all that stuff is at the right-hand, then the blue columns show the harm to the individual, and the red to others—to communities, to families too.

 

 

 

 

 

 

There’s a complex calculation giving these totals, but you can see in the left-hand column, heroin, cocaine, and alcohol cause a lot of harm to people, but they also cause a lot of harm to communities and families and individuals.

 

 

Lessons from History

This is a paper which you can’t read, of course.  This is Nikki Kalk and John Strang, and it’s a sort of discussion paper really about lessons we could learn from history. I think it’s a really interesting reference, and it summarizes quite nicely, I think, the risks.

 

 

 

 

It starts off by saying, “Don’t let a good crisis go to waste,” and the message being that policy changes when there’s a crisis. Here we are with our crisis of drug-related deaths and urgent changes in policy—HIV, dramatic changes in policy and so on. There are a lot of other very important messages there.

 

 

Current Public Health Crisis

This is Gerry McCartney, who some of you work with, I’m sure, at Public Health Scotland, now showing the life expectancy in Scotland has begun to plateau. You know, it’s gone down for the first time in recorded history. So here we are; we’ve got a crisis, and this is blamed very firmly on political austerity and poor drug policy, mainly from the Westminster government.

 

 

 

 

 

 

And of course, Michael Marmot’s famous publication, the Marmot Review—the strategic review of inequalities in England—reminds us it’s all about inequalities. The red says 40% of all influences in health are socioeconomic, and that has the largest impact on health. I mean, this is important evidence, isn’t it?

 

 

 

 

 

 

Framing of Drug Users

So drug users have been framed. This is what I suggest to you—that they’re characterized as reckless; they’re characterized as indulgent in violence and blame for crime and everything. But in fact, they’re victims of some sort of poverty and inequalities.

 

 

 

 

And the result again—the result of prejudicial legislation means they’re excluded from treatment, like I said with our GP attitudes.  And there is a resistance to progress; there’s a resistance to treatment; there’s a resistance to innovation, as we can see from the traumas and difficulties we’ve had setting up the Safer Injecting Rooms. So, there’s the result of prejudicial legislation.

 

 

 

 

Important Reports

I’m just going to move on quickly to important reports. There are a whole list of reports; I mean, I used to collect them, and I’ve got a bookcase full of reports. But there are some that stand out, I think. And of course, United Nations legislation is critically important to understand our own legislation because all domestic legislation comes from the United Nations agreements—the 1961 conventions.

 

 

 

 

But our own reports in Scotland—the McClelland Report—tremendously important. And then, of course, the UK followed on; ACMD followed on producing similar reports a year or two later.

 

 

 

 

This—you can’t read—but this is the first hundred patients in Scotland, which I think is really interesting history. It’s only 1973; I mean, I don’t think 1973 is that long ago, but it’s the first hundred cases in Scotland.

 

 

 

 

 

 

And the text there, the abstract really says these guys are untreatable; they’re very difficult. We didn’t have a strategy even though we’d set up a treatment center in Edinburgh in 1968.

 

 

Evolution of Treatment Guidelines

Again, I apologize for the quality of this slide, but with this on the left there is the initial orange guidelines published in, which were about 13 pages long and basically said that really there wasn’t a medical treatment here. Methadone, if you wanted to prescribe it, prescribe it for a couple of weeks, get people off drugs, and then move them into social services, and that was about it.

 

 

 

The McClelland Report on the right here, again about 10 pages, completely changes everything, revolutionizing the whole thing because of AIDS, because of HIV infection in 1986. Seeing upscale methadone, upscale needle syringes, getting people into treatment, retaining them in treatment, social services getting involved, prisons have to pay attention—a huge turnaround, dramatic turnaround just in the space of a couple of years

 

 

 

 

 

…followed on as we have at the present day in the wake of our current crisis with the Social Services Committee. Renée Short and her committee of ghastly backbenchers, came up to talk to us in Edinburgh and really didn’t listen and didn’t pay much attention, but actually, funnily enough, produced quite an interesting report.

 

 

Then our own, our last task force minister—we’ve had a task force before 1994. The government then urgently convened a task force, and there’s a recurring theme here, and we spent a lot of time trying to convince the minister that we have an evidence-based treatment in methadone at the time, but also other opiate substitute treatment. We did get it into this document, but it’s a recurring struggle to get our evidence base into policy.

 

 

 

The ACMD Report of course 2000, which set up the current standards for drug-related deaths, chaired by Griff Edwards, who was the doyen of research for many years and the editor of Addictions, and accepted by ministers, moved us into this era we have of having a proper system of recording drug-related deaths.

 

 

 

 

Policy Documents and Their Impact

Policy documents in England and Scotland—the Scottish one, again a bit of a revolution—all about inclusion, all about recovery, all about looking at the bigger picture and taking in the bigger community, not just individuals who come to their GPs with these awful complications, but you know, bigger. The drug users that are much more likely to do well.

 

 

 

And on to our present report and our guidelines—our current guidelines, the orange guidelines, fifth, sixth, or seventh, I can’t remember the iteration of these guidelines—now 230 pages of, you know, fairly complex text, evidence-based, very strong on evidence, very strong on practical advice and guidelines for clinicians.

 

 

 

But I think it’s more than just a guideline. I keep saying to people it’s more than just a guideline because when we get into trouble, the lawyers and the politicians and everybody looks to this to sort of say, “Well, you know, have we done this right or have we done this wrong?” And there isn’t really another textbook like the guidelines. So this is a really important reference document as well as a clinical manual.

 

 

Critique of Current Guidelines

Just not necessarily being terribly critical, but I just couldn’t help myself looking in these documents. On the left is the Road to Recovery and the Rights, Respect, and Recovery just to see.

 

 

 

You know, if you do this trick where you can search for words, you can find out how many times they’re mentioned, and you can see the harm reduction in the Road to Recovery is mentioned five times. (21.25 min sec)

 

 

 

Now, that doesn’t sound like very much, but that was a breakthrough. That was the first time in my—I’ve looked at in the international literature that harm reduction is mentioned anywhere in a national document, a bit like the McClelland Report. This was a bit of a game changer; they mentioned harm reduction for the first time.

 

 

Sadly, it only mentions harm reduction seven times in the current document. Recovery is mentioned 144 times in the Road to Recovery document and 169 times in the present document. Maintenance method and substitution are virtually not mentioned at all. Although, I mean, I do understand that it’s mentioned in other terms like getting people into treatment, and there’s a lot of work going on to get people into treatment, but you know, I think we’ve got to concentrate on getting our evidence base into policy.

 

 

National Policy Overview

So just moving on finally to national policy. How can we deal with national policy in three minutes? Well, are we in a new era? I mean, I don’t know. You know, it’s the trouble with being old is that you’ve seen lots of new eras. But we’ve got several indications of policy failure, haven’t we?

 

 

 

We’ve got several problems here. We’ve got multiple drug problems—cocaine and heroin all over the place. We’ve got this rising death rate; we’ve got a knees busy with people with drug-related problems; we’ve got our little epidemic of HIV infection—a major indicator of something.

 

 

 

And we’re needing radical change, and we’re needing radical measures, including a thought towards decriminalization, and all these things that are happening elsewhere. The reason we have to think about that is because they are happening elsewhere. You know, Colorado and Washington and California and Uruguay, and we talk about Portugal, but Luxembourg is talking now about legalizing cannabis for personal use, for recreational use, upsetting most of the European Union by going down this line. But I mean, they were going to do it; I think they are going to do it, so there’s change happening.

 

 

But we have a resistance to change clearly in Westminster. I mean, this is a little bit of an old quote, 2014, but it’s still—the rhetoric is still there, and the judgment about time-limited methadone and all these stupid ideas are still resonating a little bit.

 

 

 

This was the Home Office minister’s report—a rather blunt reply to our Scottish member of parliament asking about safer injecting rooms—saying there’s no intention of doing it, and there’s no sign of any change despite everybody else in Europe doing it.

 

 

 

 

Challenges and Opportunities

This is a slide which appeals to me. I don’t—you won’t be able to read it, but it says this is businessmen talking to each other, and the chairman’s saying, “Granted, it would have saved countless lives, but to what end?” And you know, I do think there’s an element of priorities and economic priorities rumbling along here.

 

 

 

Progress and Lack of Progress

So, progress and lack of progress—well, I mean, in my lifetime, in my career, which you know, I know it’s a long career, but it’s not that long. Um, the World AIDS Conference in Vancouver was just an extraordinary experience when David Ho announced the Hannah treatment for HIV infection—a real breakthrough.

 

 

 

Hepatitis C virus, previously known as non-A non-B and a bit of a mystery, is identified in 1990. We now have a treatment—99%, I don’t know how many percent—96% cure rate. I mean, phenomenal. So, two new viruses in my lifetime being identified, and we’ve now got cures for both of them—or not cures, but mostly.

 

 

And that’s extraordinary, but at the bottom here, a lack of progress: antagonism to medically assisted treatment goes on, austerity targeted at mental health and policy, and cuts particularly affecting drug use and mental health, and the policy paralysis.

 

 

Emerging Trends in Drug Use

And just finally, just to, you know, raise this specter of the internet, you know, which we all have to—but this is really just reminding me to say that new drugs are all over the place, new drugs are available, and they’re available on the internet, and it shows over years the supply increasing in all parts of the world.

 

 

 

 

Acknowledgments

Just acknowledgment and thanks; I don’t need to tell you about that. But there’s a quote from Bruce Springsteen—I don’t know if he ever said that; it’s a nice quote. Thanks, Katrina.