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The Emergence and Evolution of Drug User Groups in the UK

Published onJun 06, 2020
The Emergence and Evolution of Drug User Groups in the UK
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Note: This is the postprint of the following paper; publisher version available here.

Bennett, Trevor, Scott Jacques, and Richard Wright. 2011. The Emergence and Evolution of Drug User Groups in the UK. Addiction Research & Theory 19:556-565.

Abstract: The aim of this article is to describe and explain the development of drug user groups in the UK and elsewhere by drawing on a case study of one of the earliest drug user association formed in England in 1983, known as the Drug Dependents’ Association. By way of context, a literature search was conducted to find other examples of original case studies of early drug user groups. The main method of investigating the case study arose out of the recovery of research materials by two of the authors which were used as part of another research project conducted in the early 1980s. The data collected comprised a full transcript of the first meeting of the group, agendas of all of the meetings and notes taken by the authors at the time. The analysis of the search material and the case study data indicates that drug user associations have change markedly since these early forms. The main changes include the integration of drug user groups into mainstream practice through the development of service user groups, a shift away from user-led to service-led organizations, as well as a change in focus from broader political campaigning towards the details of service provision.

Introduction

Prior to the 1960s, the number of known non-therapeutic opioid addicts in the UK was small. In 1959, there were less than 500 addicts known to the British Home Office, and, even by the late 1960s, the number was under 1,000 (Spear, 2002). As far as we can tell, there were no early drug user groups among these addicts, and users in treatment were given the same rights as other medical patients. During the late 1960s and 1970s, a small number of voluntary organisations were established, such as Phoenix House, which aimed to rehabilitate drug users, and Release, which campaigned on their behalf (Mold and Berridge, 2010). While these organisations supported and acted on behalf of drug users, there were no independent drug user groups at that time. During the 1980s, the first user groups appeared and began to campaign for the rights of drug users. While they initially were treated with suspicion, over the next two decades drug user groups expanded rapidly and were incorporated into current debates. By the end of the 1990s users’ views and rights were an accepted feature of national drug policy (Mold and Berridge, 2010).

The aim of the paper is to explore the rise, development, and effect of user groups in the UK, and to a lesser extent elsewhere, by drawing on a case study of one of the earliest groups of this kind. The data used for this enterprise was to some extent fortuitous in that two of the authors recently recovered the transcripts of a study that they conducted on drug users in the early 1980s on a different topic. In thinking about this historic data, it became clear that the information comprised one of the fullest accounts of early user group formation and might help explain more generally how and why these groups emerged. Such information is important because, among other things, it serves to situate modern harm reduction policies in their socio-historical context and to demonstrate the challenges faced by drug users in campaigning for a role in their own treatment. Accordingly, this paper deploys these data not as an historical curiosity, but rather as a lens through which to view contemporary drug user groups worldwide.

Methods

Review of User Groups Studies

In order to provide a context for this investigation and to determine which other studies had reported on drug user groups, the authors conducted a review of the research literature on substance user groups.  The review was based on a key-word database search using CSA Illumina which encompasses four databases (Applied Social Sciences Index & Abstracts (ASSIA), British Humanities Index (BHI), International Bibliography of the Social Sciences (IBSS), Linguistics and Language Behavior Abstracts (LLBA).  We did not attempt a full systematic review as we aimed mainly to provide a context for our own micro-historical research. The search resulted in 13 studies of relevance to the topic area and six of these studies reported original findings on particular user groups (the details of these are reported in Table 1). We also included two previously held publications that provided useful secondary information (Mold and Berridge, 2008, 2010). While not an exhaustive search, we believed these 15 studies provided a comprehensive overview of the topic area.

The Early Group Case Study

The material for our micro-historical case study derived from data gathered during 1983 and 1984 as part of a larger project studying the changing landscape of British drug policy. By mutual agreement, the third author of the paper chaired meetings between DDA representatives and local doctors and staff in a drug clinic in the middle of England. The materials collected include detailed notes of interviews with DDA members and clinic staff, minutes of all meetings between DDA and clinic representatives, and a verbatim transcript of the first meeting of the DDA group.

One justification for this method is that much of what is known about drug policy derives from ‘top down’ conceptualisations and explanations based often on strategy documents and government reports. There is an increasing argument in favour of micro-qualitative case studies which can help explain social phenomena from the ‘bottom up’ (Campbell and Gillies, 2001). 

The Rise of User Group Associations: The 1980s

The results of the research study review shows that the early history of user group associations begins in the early 1980s. A summary of the growth of user groups associations around the world is shown in Tables 1.

***Table 1 about here*** 

One of the first user group associations was the ‘Junkiebond’ established in Rotterdam in 1981 by a group of heroin users (Trautmann, 1995). The main aims of the group were to campaign against current drug policies focused on rapid detoxification and restrictive methadone prescription procedures, and to establish a needle exchange programme. The group generated a great deal of support among the media and national ministry of health and in 1987 succeeded in achieving a national needle exchange programme (Friedman et al., 2007).

Early groups associations were also recorded in the United States. Friedman et al. (2007) described the ways in which Intravenous Drug Users (IDUs) responded to the onset of AIDS in the late 1970s by establishing street markets in sterile syringes. The authors conclude that this ‘grass-roots, micro-social action’ almost certainly had a substantial impact on the spread of HIV. In the autumn of 1985 an association called ADAPT (Association for Drug Abuse Prevention and Treatment) was established in New York City by a small number of former drug users employed in drug treatment programmes (Friedman et al., 1987). Their aim was to act as a pressure group in relation to treatment policies and existing drug laws. They also established a syringe exchange programme. The core membership included over twenty active members comprising street users and those currently in treatment. In 1988, a needle exchange programme called Prevention Point was established in San Francisco by HIV counsellors and local IDUs (Moore and Wegner, 1995). Initially, the scheme operated illegally and volunteers often were arrested. Eventually the programme became accepted and the police entered a tacit agreement not to arrest the street workers. At the time of publication, the authors noted that Prevention Point had become the largest syringe exchange programme in the US.

Other early drug user organisations were developed in Australia. These also were stimulated by the threat of HIV and AIDS and other health problems associated with intravenous drug use. Several groups emerged during the late 1980s, including the Victorian Intravenous AIDS group (VIVAIDS). It comprised 30 drug users (some of whom were HIV positive) as well as a number of concerned service providers such as drug workers and staff from the state health department (Crofts and Herkt, 1995). The group was successful in opening the first peer-based needle exchange programme in Victoria. Other schemes included the New South Wales Users and AIDS Association (NUAA), the Queensland IV AIDS Association (QuIVAA), and the Australian Capital Territory IV League (ACTIV League). Together, these schemes were heralded as being a significant factor in curbing the spread of AIDS in Australia (Crofts and Herkt, 1995). 

The studies show that the early history of user groups around the world began in the early 1980’s. There are no records that we found of groups earlier than this but it is possible, of course, some incipient forms were in place slightly earlier. The main features of these groups were to campaign against current drug policies and for better harm reduction measures. Some groups were general in their interests (e.g. ADAPT in the USA) and some had specific concerns (e.g. VIV AIDS in Australia which campaigned primarily about the prevention and treatment of AIDS). One feature of these groups that is particularly striking when comparing them against their current forms is that they were almost wholly user instigated and user led. 

The Growth of User Groups: 1990s

The early groups appeared when the concept of harm-reduction as applied to drug misuse was still in its infancy.  In the UK, the early days were filled with confusion and uncertainty and drug policy in treatment clinics wavered between being tough and lenient. Initially, the vast majority of addicts attending such clinics were prescribed injectable heroin on a non-reducing or “maintenance” basis (Stimson & Oppenheimer, 1982; Bennett & Wright, 1986). Within a decade, however, prescribing policy among consultants in many of the clinics, especially those located in London, changed. An informal agreement was reached not to prescribe opiates in injectable form, and to provide non-reducing doses only for established patients, that is, those who already had been in treatment for some time (Spear, 1982).

During the late 1980s and early 1990s, with increasing concern about HIV and AIDS among injecting drug users, British interest in harm reduction returned (Stimson & Lart, 1991; Newcombe, 2007). This was reinforced by the Advisory Council on the Misuse of Drugs, which argued in its report at the end of the 1980s that AIDS was more of a threat than drug misuse (Advisory Council on the Misuse of Drugs, 1988). In response, a number of needle exchange schemes were established with the initial aim of reducing the spread of HIV infection among drug users. The development of these schemes was documented in the guidance notes of the first strategy document of the new Labour government Tackling Drugs to Build a Better Britain, Guidance Notes 1998 (Home Office, 1998). The notes welcomed the expansion of needle exchange programmes over the previous decade. They explained that the primary aim of such programmes was to reduce the use of shared injecting equipment and to increase the use of clean equipment among injectors who did share. The paper accepted that there were harm-reducing benefits attached to maintenance prescribing and noted that, ‘The controlled prescribing by doctors of drugs to help users deal effectively with withdrawal from heroin, tranquillisers or alcohol, and the longer term prescribing of substitute opiates as a suitable and safer alternative to street heroin, are well established practices in the UK’ (Home Office, 1998: 33).

One of the earliest publications on user associations in the UK examined drug user networks and coping strategies in the early 1990s in England (Power, Jones, Kearns, Ward, & Perera, 1995). The authors found that drug users in the three areas investigated (London, Hertfordshire and ‘Midtown’) relied heavily on each other for advice and support. Many of them were part of a social network centred on the use of illicit drugs. Most of these networks promoted risk reduction strategies and examples were given of networks collecting and distributing clean injecting equipment to members. The authors provide a case study of one network which discouraged intravenous drug use and banished members who lived chaotic lifestyles. They concluded that the social networks in the areas studied provided positive coping strategies and enabled drug users to adopt and sustain desired behavioural change (Power, Jones, Kearns, Ward, & Perera, 1995).

The climate for the development of user groups was much more favourable to user groups during the early 1990s. During this time, user groups began to expand in numbers. One of the most widely documented programmes is the Vancouver Area Network of Drug Users (VANDU) established in 1997 by a group of Vancouver residents, drug users and community activists as a means of addressing what they saw as a health crisis among local IDUs (Kerr, Small, Peeace, Douglas, Pierre & Wood, 2006). The group organised community meetings of drug users and others interested in drug and health issues. The group soon expanded to over 1,000 members and has since been attributed with many successes, including improving health care and support for drug users and limiting the spread of AIDS. 

The early user groups were thus characterised by harm reduction and the threat of AIDS.  All of the groups identified from the literature review focused their efforts on the risks of injection and the development of needle exchange programmes. They all existed outside of mainstream policy and to some extent were marginalised from current debate.  Along with the broader social change that occurred at the turn of the new millennium,  the style and focus of user group associations began to change. 

Contemporary User Groups: The 2000s

Since the beginning of the new millennium and the consolidation of harm reduction as one of the main arms of the national drugs policy, user groups have flourished.  At the same time, their role has changed away for the dominant focus associated with intravenous injection and the threat of AIDS towards a broader social and political role. User groups are now widely represented in almost all aspects of drug treatment and come in several forms.  The major development during the late 1990s and the early 2000s was the widespread involvement of substance users in the implementation of government policy (Mold and Berridge, 2010). The precursor to this change was the Conservative government’s Citizen’s Charter which gave users of the public services the same rights as the consumers of other services (Home Office, 1991). The concept subsequently was applied by the Labour government to the health service with the idea that patients should be viewed as service users who have rights over the type of service received. These changes in turn began to influence drug policy and practice, and drug users became reconceptualised as service users. The task of managing this change fell to the National Treatment Agency (NTA) which provided financial support for some national users groups and even included drug users on their management board. Since then all local drug services are expected to involve drug users in planning and implementing their services. Active drug users are now frequently employed as care workers and as support staff in local treatment agencies (NTA, 2006).

User groups also continue to exist outside of statutory services to campaign for the rights of drug users.  These groups tend to operate at a national level through internet sites and their own publications. The main groups are Black Poppy, the Users’ Voice, the Alliance, and Transform. They tend to be more confrontational than the state-backed service user groups and seek to improve user rights generally, including their rights to use drugs (Mold and Berridge, 2010).

Contemporary drug users’ groups thus comprise those that aim to improve treatment for service users and those that seek broader social and political goals for all users. It could be argued that both groups are now mainstream: the former have existed for many years and are more or less normalised and the latter are an accepted and even encouraged part of the process of dealing with drug dependence. This is a long way from the earliest groups that fought to create a voice for drug users. It is tempting to speculate about the reasons for these changes. However, it is difficult to do so when so little is known about the true nature of these early groups. While there are some cases studies available from the US, Canada, Australia and the Netherlands, there are few qualitative studies from elsewhere, and none from the UK. In the remainder of this paper we will describe one of the earliest (perhaps the earliest) user group established in the UK, drawing on field notes and transcripts collected at the time of its inception. 

The 1980s and the Rise of the “Drug Dependents’ Association”

One of the earliest drug user associations in Britain was the Drug Dependents’ Association (DDA), established in 1983.[1] It emerged at a time when harm reduction policy in Britain was being called into question and concern was beginning to be expressed about the appropriateness of treating dependent drug misuses as if they were long-term patients. It was in this context of uncertainty and suspicion that the DDA was formed.[2] 

Founding the DDA

The first meeting of the DDA was devoted to establishing an organizational structure, deciding on rules for membership, and setting a preliminary policy agenda. Albert, the addict who chaired the meeting, reported that it was highly successful, despite being a little difficult to control: “Everybody was shouting across the room to one another and nobody addressed the chair.”[3]

The first matter discussed at the meeting concerned who was eligible for membership in the union. It was decided that, for the time being, membership would be restricted to so-called “registered” addicts, that is, those who currently were receiving treatment for addiction at the clinic. Nevertheless, there was strong sentiment expressed for eventually opening up membership to non-registered addicts, occasional users, and alcoholics. There was even a fair amount of support for allowing dependents of addicts and users to join the union, though some felt that because the clinic already sponsored a support group for the dependents (a liberal user-oriented regime) of drug dependents, they did not need to be included.

The next issue addressed was whether and how to use the media to advance the union’s interests (again sophisticated community activism). The majority view was that the media would exploit and misrepresent the idea of a drug addicts’ union; thus, they were best avoided for now. Albert vehemently disagreed, arguing that publicity was the best way to improve addicts’ image with the public (an interesting and unexpected aim): “Have a group of addicts digging old ladies’ gardens with a convenient newspaper photographer nearby.” Although he was out voted, he did get the membership to agree that generating positive publicity for the union would be important at some as yet unspecified future date.

Perhaps the most important decision taken at the meeting involved the establishment of a “grievance committee,” with three members -- Albert, Paul, and Mike -- being elected to represent the union’s interests in dealings with the clinic. The goal was to persuade clinic doctors, nurses, and social workers to meet regularly with this committee to discuss union members’ concerns. In establishing a grievance committee, the addicts quickly realized that they had few realistic sanctions that could force the clinic to negotiate with them. As Albert explained: “Everyone at the meeting agreed that we must work with the clinic. We must not be divisive because in a power struggle, we’ll lose.” It was this recognition that dissuaded the addicts from including the word “union” in their organization’s title, opting instead to call themselves an association. Thus, the DDA was born.

The First Meeting

The first meeting between representatives of the DDA and clinic staff took place on February 22nd, 1983. Representing the DDA were the three members of its grievance committee, while the clinic was represented by Mike’s doctor, a psychiatric nurse attached to the clinic, and the clinic’s psychiatric social worker. Although the consultant in charge of the clinic sanctioned the meeting, he did not attend. The meeting was chaired by Author C, who at the time was a drug researcher attached to a local university.

To begin the meeting, the chair asked the DDA to outline the general aims and intentions of the association.  Paul responded that “this is really the main aim, to try and establish some kind of regular meeting, everything else stems from that. Apart from that, we feel that we can help one another better by being a little more united than we have been in the past, by our very nature we have been isolated as individuals….The original aims [of the DDA are] firstly, to establish a dialogue with the clinic; secondly, to try and let the clinic know how we feel about the operation of the clinic; and thirdly, to try and improve our image in various ways by paying our way a little bit more.”

The chair then asked whether any of the clinic representatives wished to respond to Paul’s opening remarks. The social worker present observed that “the agenda the DDA has given us is quite general and I’d like to hear their specific proposals.” Paul answered by asking whether it would be possible to meet regularly with clinic staff: “The opening point is can we call this the first in a series of meetings or is it a one-off thing? Really we would, however rarely, like reasonably regular meetings.” On behalf of the clinic, Mike’s doctor replied that it certainly should be the first of regular meetings, saying, “I very much hope that we will get together to talk.”

After some discussion, it was agreed that the group should meet at 1pm on the third Tuesday of the month, with one of the DDA representatives being substituted with a different member of the organization for each meeting, thereby increasing representation while maintaining a degree of continuity from one month to the next. The DDA representatives felt that it was vitally important to give other members of the organization a chance to participate in the meetings. As Albert explained: “Lots of people have asked [to be at this meeting] and lots of people wanted to be here. More than you would have expected really; they’ve got lots of things they want to say to the doctors that they can’t say in their doctor/patient relationships.”

DDA representatives and clinic staff were agreed that a forum that allowed patients to raise concerns about their addiction treatment with doctors and staff could be useful and productive, with the DDA representatives going so far as to predict that it could serve as a model for other clinics throughout England and Wales. On both sides there was a strong commitment to establishing such a forum, and to maintaining it over time. Mike put it this way: “We don’t want it to fizzle out. We don’t want people to say, ‘Well, we knew junkies couldn’t get anything together for very long.’”

The DDA Agenda

For the next half year, DDA representatives met monthly with clinic staff to air their concerns and grievances. Four major topics dominated those meetings: assessment of drug needs, emergency provision of treatment, sterile syringe availability, and deterrents to coming off.

Assessment of Drug Needs

A recurrent theme throughout meetings between the DDA and clinic representatives concerned how best to assess whether someone approaching the clinic for drugs really needed them and, if so, what dosage they required – the size of an addicts habit being particularly difficult to determine. DDA members were especially concerned about this matter because they knew first hand that certain individuals had been “over-prescribed” by the clinic and were selling a portion of their drugs on the open market, often to other clinic patients who, in their judgment, had been “under-prescribed.” This, they contended, not only fuelled a blackmarket in pharmaceutical drugs, but also tarnished the reputation of all clinic addicts, thereby jeopardizing the stability of their own drug supply. As Mike observed: “Junkies selling gear is the biggest argument against maintenance doses put forward by opponents of the clinic system.” To counter this threat, DDA representatives called for a more reliable method of drug needs assessment.

Clinic representatives, especially Mike’s doctor (the only physician who ever attended one of these meetings), expressed great concern about the selling of prescribed drugs, but could not suggest a practical way to assess addicts’ drug needs reliably. They also questioned whether addicts were really being over-prescribed, suggesting instead that some individuals were selling their methadone prescriptions to enable them to buy non-pharmaceutical heroin or some other street drug. The DDA representatives admitted that this sometimes happened, but maintained that in most cases addicts were selling part of their prescriptions simply because they had been prescribed too much to begin with. They suggested a system of “random” or “continuous” drug needs assessment in which all clinic addicts would be required, without prior warning, to inject the whole of their daily prescription in front of one of the clinic doctors who then would observe their reaction to the dosage. Furthermore, they recommended that all addicts be told at the outset that consent to this procedure is a non-negotiable pre-condition of being taken on at the clinic. This, they argued, effectively would deter many addicts from requesting a higher dose than they can handle in the first place.

Another emergent tension concerned whether or not DDA representatives should provide the clinic with names of individuals who are known to be selling a portion of their prescribed drugs.  A majority of DDA members favoured doing so, arguing that these individuals almost certainly would be caught eventually anyway and that this not only would embarrass the doctor involved and reflect badly on the DDA, but also could result in reduced prescriptions for all of them. Some, however, feared that informing would destroy the DDA’s credibility with addicts and thereby jeopardize its long term viability as an organization.

Emergency Provision of Treatment

A second recurrent theme throughout meetings between the DDA and clinic representatives had to do with emergency treatment for registered addicts, especially those who accidentally “broke” or “lost” their methadone ampoules during times when the clinic was closed. In the past, addicts receiving a prescription for opiates were able to get an emergency supply of methadone linctus “to tide them over” from the casualty department at the local hospital. That practice, however, had been curtailed, apparently because the consultant in charge of the casualty department believed that the addicts were selling their prescriptions so they could buy heroin instead, and then coming to casualty to make up any shortfall in their drug needs. As the clinic social worker explained: “Why there’s a problem with [addicts getting emergency prescriptions from the local casualty department is] because there are a few people who tell some pretty drastic untruths some of the time… It’s assumed that you are all degenerates and you are all liars; liars first and degenerates second and it’s not true. It is true for some people, but…you catch it in the neck for that small group.” He then asked whether these meetings might help to promote more honest communication between addicts and doctors. Albert answered that this certainly was possible, provided that the clinic adopted “a more realistic view” of their addict patients: “So, I mean, you can have more honesty yes, but…it takes a more realistic view on your part not to assume we are all angels because we are not and people don’t keep to their prescriptions. I think we are prepared to come out and admit a lot of things if we are not met with a victimization or punishment for admitting [them].”

Mike’s doctor suggested that perhaps one solution to the occasional need for an emergency supply of drugs out of clinic hours would be for addicts to contact their G.P. The DDA representatives, however, were strongly against this idea because they felt it further would damage their image with doctors, especially as this often would involve calling them well after midnight. Mike went so far as to suggest that the idea of contacting their G.P.s out of hours was wholly impractical. As he put it: “It’s just ridiculous, isn’t it?” Instead, the DDA representatives suggested setting a strict limit on the number of times a year that any given addict could receive an emergency supply of linctus and requiring that the clinic be informed each time they receive one so that, as Mike said, “everyone can explain it next time they see the doctor.”

For their part, the clinic representatives welcomed the idea of requiring the casualty department to inform the clinic if and when a registered addict received an emergency supply of linctus, but opposed setting limits for fear this would encourage more abuse. The clinic nurse spoke for all in saying that “rather than putting on limits, [the provision of emergency drugs should] emphatically [be] reported back to the prescribing doctor; then it has to be discussed with you, rather than lending itself to, ‘Well, I can have three accidents a year.’”

This discussion highlighted an abiding tension between DDA and clinic representatives over the primary goal of addiction treatment. Whereas the DDA tended to focus on matters of social control, especially the prevention of a large-scale drugs blackmarket along the lines of the one that already existed in the United States, clinic representatives tended to emphasize matters related to the care and treatment of individual patients. This is not to say that their concerns did not overlap; they clearly did. Mike’s doctor, for example, often was heard to lament the fact that too few of her colleagues were willing to recognize that one of their medical obligations was to control the blackmarket. Rather it is to suggest that the DDA and clinic representatives came to the negotiating table with different understandings of the aims of addiction treatment; this, perhaps more than anything else, complicated the search for common ground in their discussions.

Sterile Syringe Availability

Closely related to the availability of emergency treatment was the DDA’s strong advocacy for making sterile syringes available to all addicts registered at the clinic, including those who were not being prescribed injectable drugs. As Mike put it: “It’s ridiculous not to, people won’t get hepatitis from a dirty needle then, and they are going to use [syringes] anyway….They are going to use their friends’ dirty ones….They are going to use eyedroppers [and] then they share them, go round the group like this, dirty and bloody….Like the New York scene where everyone is getting hepatitis and everything.”

Clinic representatives accepted that some addicts “will bang up anything” and that it might be reasonable to give them syringes. At the same time, however, they argued that doing so might encourage injecting and that this therefore was “a complicated moral issue.” The DDA countered that there was little evidence that providing needles to addicts encouraged injection and that, even if it did, it was preferable from a health standpoint that clean needles be used. In the end, the clinic representatives agreed that, subject to the consultant’s approval, syringes would be given to any patient who requested them.

With benefit of hindsight, it is easy to see that the DDA was prescient in pushing the clinic to act on this issue. Although no one realized it at the time, AIDS already was finding its way into Britain’s addict population. 

Deterrents to Coming Off

A final theme that recurred throughout discussions between the DDA and clinic representatives concerned ways in which current clinic policies inadvertently served to deter patients from trying to get off of drugs. Although many patients at the clinic were receiving so-called maintenance (or non-reducing) dosages of injectable methadone, those who tried unsuccessfully to quit often found it difficult to get re-registered. This, DDA representatives argued, was illogical and counterproductive. As Albert explained: “I think the important thing is the effect [the current policy] has on the people who perceive what’s happening, those who might have success in coming off. One failure isn’t really so important as compared to those who might succeed if they were prepared to try. I mean, what’s lost by failure – nothing is lost if they are trying. If they try in the first place, they can at least cut their use down. So in a sense if it isn’t that difficult to get re-registered, that’s not going to [deter them from trying]. At least it means they cut down; no one is going to go back on their original prescription, no one is asking for that. At least it will be a limited success.”

Paul then asked why the clinic had to have such a rigid prescribing policy: “I’d like to know if there’s any reason why prescriptions have to be so…hard and fast; you either are or are not [registered], you know. Couldn’t there be a period of time where you’ve got something to fall back on? Maybe you’ve got to sweat a bit to get it, but at least you’ve got something [if you need it]….People would at least be able to feel more at ease if they really did get bad or go through a bad patch….Is there any reason why it should be all or nothing?”

Mike’s doctor explained that the current policy was much easier to administer than a more flexible approach to prescribing, adding, “[B]ut that’s bureaucracy [and] that shouldn’t be what we are really concerned about because we are concerned about people. I think the fear [attached to a more flexible prescribing policy] would be that people who came in and said I really must have six amps for the next three days would not be satisfied. They would be back next week and say, ‘that’s not enough, I’ve got to go on having eight amps every day.’”

Mike admitted that this might sometimes happen, but that this was preferable to having relapsed addicts scoring on the blackmarket: “I think that probably, if they [do] come back, that would be the case and just saying, ‘No, you can’t have it at all,’ they are just going to go somewhere else. You would be doing them a big disservice. You would be doing everyone a big disservice, except the people selling blackmarket gear. In theory it sounds okay what you are saying, but in practice the only guy who’s going to benefit is the person selling blackmarket gear. The person who’s addicted again and wants to be covered or something like this, even if they do come here and say, ‘I want eight amps,’ it is better really for them to do that. Anything is better really than to be thrown back on the street with a bad habit.”

Here again it is evident that the DDA and clinic representatives viewed the same problem from distinct but overlapping perspectives. Both agreed that addicts seeking to come off of drugs should be encouraged, but whereas the clinic believed that this required steps to deter any temptation for them to backslide, the DDA saw those same attempts as discouraging addicts from trying to come off in the first place. Moreover, the DDA feared that the current clinic policy was serving to fuel the local blackmarket, while clinic representatives saw it as removing potential customers from that market by curing them of their addiction, even as it provided maintenance prescriptions to many of its patients. 

The Demise of the DDA

DDA representatives failed to turn up for the eighth regularly scheduled meeting with clinic representatives. With that, the organization effectively ceased to function. The most proximate cause of the organization’s demise was a fight over a woman involving two members of its grievance committee. But there were deeper causes as well. Foremost among them was a deepening frustration among the membership over what was perceived as a lack of any real progress in persuading the clinic to change its policies. In retrospect, this frustration is hard to understand; within the space of six months regular meetings with the clinic had been established and some preliminary steps had been taken to respond to at least some of the DDA’s concerns. At the time, however, the enthusiasm with which the DDA was established had fuelled expectations that were impossible to meet, especially among an addict population not known for its ability to delay gratification.

Another major reason that the DDA fell apart relates directly to the fact that its representatives were dependent on drugs, which made it difficult for them to portray themselves as reliable and responsible in their dealings with the clinic. For example, Mike, a normally mature and thoughtful individual, routinely got nervous before meetings with clinic representatives and compensated by overusing his prescribed drugs. As a result, he had a tendency to nod off or “gouch” during meetings.

More than anything, though, the DDA was swimming against the tide of a changing national drug policy; one that was moving away from maintenance prescribing and injectable drugs in favor of reducing doses of oral methadone. Ironically, the clinic they were seeking to influence was bucking this trend and, perhaps for that very reason, the consultant there showed less inclination than they wanted to deviate further still. This, too, had the effect of making the DDA appear ineffectual to its wider membership and, ultimately, to its representatives as well. As a result, and reflecting Mike’s initial fears, the DDA “just fizzled out.” 

Discussion

The DDA was primarily a pressure group which sought to influence clinic policy. It was formal rather than informal in structure and had an executive board, associate members drawn from clinic staff and doctors, and regular minuted meetings. It was user-instigated rather than provider-instigated, as the primary movers in forming the group and taking it forward were the drug users themselves. The primary aim of the DDA was to improve the day-to-day conditions of users in treatment as well as monitoring the quality of black-market drugs. While it also had more grandiose aims of changing media and public opinion and ultimately government policy regarding the control of drugs, no direct actions were taken in this respect.

In many respects, the DDA was typical of the kind of user groups that formed during the 1980s.  However, as one of the earliest groups in the UK, it came slightly before its time and its purpose was never fully understood by the doctors or the users. Had the DDA emerged a few years later, it might have met with more success and perhaps even become a national model. In the early 1980s, AIDS was spreading silently among intravenous drug users, but this was largely unrecognized and certainly played no part in drug policy discussions that instead focussed much more strongly on getting addicts off of drugs as soon as possible. Once AIDS was linked more firmly to illicit drug use, the case for sterile needle exchange and numerous other aspects of harm reduction was much more easily and persuasively made (NIDA, 1995). Looking back, it is chilling to realize that the DDA and clinic representatives debated how best to minimize the various harms of drug misuse under the spectre of a virus that would end up killing so many intravenous drug users.

It is not wholly clear how or why user groups in the UK expanded rapidly during the late 1990s and early 2000s. One important factor is likely to be the broader political changes in government policy concerning the expansion of citizen rights. Citizens of public services were to be regarded as service customers who had similar rights as those in the private sector. Further, the existence of a national health service meant that government health policy could be readily implemented in practice. The principles contained in the citizens’ charter were fairly easily absorbed into the health service and patients quickly became viewed as customers. This prompted the creation of service users groups and a platform for the views of substance misusers.

A second question is the extent to which the early user groups were in any way similar to user groups today. The micro-historical case study of the DDA has provided some useful data on how they might compare. The main distinction that we can observe is that the DDA combined features of both the user activists and service user groups of today. Contemporary user activists seek to change the political standing and rights of users including the right to take drugs, whereas service user groups monitor and advise on drug treatment policy and service provision. The aims of the DDA included both. It is tempting to conclude that this early group was a hybrid containing elements of the major types of user groups that followed. A limitation of this depiction is that the DDA contained more of the features of the current service user groups than of the user activists. In practice, the focus of their activities was on managing their own treatment programmes; little was done to promote the broader rights of drug users. An alternative interpretation is that the DDA was an incipient form of the service user group aimed at improving the care of drug users in treatment, pre-empting by several years the government’s involvement in this process.

A third question that the paper can help answer is the extent to which the DDA group was different to contemporary versions of these groups. The DDA, like many of the early groups, was independent, self motivated, and operated largely outside of mainstream medical practice. Contemporary users, by comparison, are typically established, not so much by users, but by mainstream organisations and agencies seeking to involve user group representatives in their activities.

There are several other lines of inquiry raised in this paper that should be explored in future research. The issue of the representativeness of users groups as a voice for drug users generally needs to be considered. There is some evidence from the DDA case study that the core members of the groups were an elite few who in the end came to represent nobody but themselves. It is also unknown whether the attempts of user groups to put harm reduction on the government agenda resulted in its absorption into government policy or whether the broader drive towards harm-reduction heralded by the government placed harm-reduction on the agenda of the user groups. A plausible hypothesis is that both were at work. It is certainly possible that during the early period user groups were instrumental in raising government awareness of the need for a harm reduction approach. More recently, it is more likely that government harm reduction policy has influenced the agenda of user groups, particularly the service user groups.

The field is also in need of more micro-level research on the influence that contemporary user groups have on treatment practices and policies. Substance misusers are often recruited to sit on committees run by local agencies and sometimes on the boards of national committees. They also provide a voice for users within the main treatment services and agencies. Despite their pervasiveness, there is some doubt about how much influence they have in practice (Lenton, 2004). One concern is that while user groups are often instrumental in bringing about change in terms of programme implementation and health care practice, they play much less of a role in determining drug policy (Mold and Berridge, 2010).  If this is correct, then drug user groups have had greater success in terms of influencing their own treatment plans than in influencing the broader debate about the criminalisation of drug misuse and the status of drug misusers in society (see Measham & Shiner, 2009). Perhaps this is because, as revealed by the experience of the DDA, addicts are experts when it comes to outlining the day-to-day problems they and their peers confront in trying to obtain drugs, but are not necessarily best-placed when it comes to deciding how those drugs should be regulated. Thus they are bound to be more successful in advocating for their own direct interests than in shaping government policy directed at controlling drug use and abuse among the population as a whole.

References

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Crofts, N. & Herkt, D. (1995). A history of peer-based drug-user groups in Australia. Journal of Drug Issues, 25, 599–616. 

Friedman, S. R., Des Jarlais, D. C., Sotheran, J. L., Garber, J., Cohen, H., & Smith, D. (1987). AIDS and self-organization among intravenous drug users. International Journal of the Addictions, 22 (3), 201-219. 

Friedman, S. R., de Jong, W., Rossi, D., Touze, G., Rockwell, R., Des Jarlais, D. C., & Elovich, R. (2007). Harm reduction theory: Users’ culture, micro-social indigenous harm reduction, and the self-organization and outside-organizing of users’ groups. International Journal of Drug Policy, 18 (2), 107-117. 

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Kerr, T., Small, W., Peeace, W., Douglas, D., Pierre, A. & Wood, E. (2006). Harm reduction by a 'user-run' organization: A case study of the Vancouver Area Network of Drug Users (VANDU). International Journal of Drug Policy, 17(2), 61-69. 

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Table

Table 1. Recorded users group associations established in the 1980s and 1990s

Date

Country

Description

 

 

1981

Netherlands, Rotterdam

One of the first in Europe was the ‘Junkiebond’ established in Rotterdam in 1981 by a group of heroin users (Trautmann, 1995). The main aims of the group were to campaign against current drug policies focused on rapid detoxification and restrictive methadone prescription procedures, and to establish a needle exchange programme. The group generated a great deal of support among the media and national ministry of health and in 1987 succeeded in achieving a national needle exchange programme (Friedman et al., 2007).

 

1985

USA, New York City

In the autumn of 1985 an association called ADAPT (Association for Drug Abuse Prevention and Treatment) was established in New York City by a small number of former drug users employed in drug treatment programmes (Friedman et al., 1987). Their aim was to act as a pressure group in relation to treatment policies and existing drug laws. They also established a syringe exchange programme. The core membership included over twenty active members comprising street users and those currently in treatment.

 

1988

USA, San Francisco

In 1988, a needle exchange programme called Prevention Point was established in San Francisco by HIV counsellors and local IDUs (Moore and Wegner, 1995). Initially, the scheme operated illegally and volunteers often were arrested. Eventually the programme became accepted and the police entered a tacit agreement not to arrest the street workers. At the time of publication, the authors noted that Prevention Point had become the largest syringe exchange programme in the US

 

Late 1980s

Australia, Victoria

Several groups emerged during the late 1980s, including the Victorian Intravenous AIDS group (VIVAIDS). It comprised 30 drug users (some of whom were HIV positive) as well as a number of concerned service providers such as drug workers and staff from the state health department (Crofts and Herkt, 1995). The group was successful in opening the first peer-based needle exchange programme in Victoria.

 

Early 1990s

England, London and nearby

One of the earliest publications on user associations examined drug user networks and coping strategies in the early 1990s in England (Power, Jones, Kearns, Ward, & Perera, 1995). The authors found that drug users in the three areas investigated (London, Hertfordshire and ‘Midtown’) relied heavily on each other for advice and support. Many of them were part of a social network centred on the use of illicit drugs. Most of these networks promoted risk reduction strategies and examples were given of networks collecting and distributing clean injecting equipment to members.

 

1997

Canada, Vancouver

The Vancouver Area Network of Drug Users (VANDU) was established in 1997 by a group of Vancouver residents, drug users and community activists as a means of addressing what they saw as a health crisis among local IDUs (Kerr, Small, Peeace, Douglas, Pierre & Wood, 2006). The group organised community meetings of drug users and others interested in drug and health issues. The group soon expanded to over 1,000 members and has since been attributed with many successes, including improving health care and support for drug users and limiting the spread of AIDS.

 

Notes

[1] The acronym DDA was purposely chosen by the addicts to reference both the Dangerous Drugs Act of 1967 - which authorized the drug-dependence clinics - and the locked DDA Cabinet in which British chemists store drugs restricted under this Act. 

[2] To our knowledge, this was Britain’s first drug addicts’ union, though a similar organization – the Alba Association – was established in London shortly thereafter.

[3] All names are pseudonyms.

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