Who is the drug user activist?: recounting the conceptualisation of drug user activism in the United Kingdom

Abstract

The British model of harm reduction has been referenced as a pioneering approach to substance use in Europe. While many have described the development of UK drug policy through different governments, few studies have focused on the role that drug user activists played in the UK drug policy reform movement. We examine the different conceptualisations of UK drug user activists in literature, including published academic journals and grey literature (news articles, podcasts, websites and unpublished dissertations). We describe the different conceptualisations of ‘the drug user activist’ based on chronological periods relevant to drug policy, namely: Pre-Misuse of Drugs Act (1870–1971), Misuse of Drugs Act (1971–1988), Thatcherite and AIDS crisis (1988–1998), New Labour and Internet (1998–2010), and Contemporary (2010 to present).

In the 1900s, we see a shift from drug users portrayed as victims coming from privileged backgrounds to middle class people who displayed problematic behaviours. After the passage of the Misuse of Drugs Act 1971, drug user activists started to organise themselves and deliver education and outreach services. This was further amplified during the AIDS crisis and the Thatcherite era where drug users were involved in developing what later became the model for the public health approach to substance use. Drug user engagement with the government was strengthened during the New Labour government with the formation of the National Treatment Authority. Outside of government, drug users formed alliances which were crucial in ensuring accountability from the government. Upon the abolishment of the NTA, the organisations of drug users weakened. Drug user activists continued their initiatives, albeit on a smaller scale, while trying to rebuild the drug user movement. Further forms of documentation are needed to develop a more holistic historical account of drug user activism in the UK.

Introduction

The British history of harm reduction is often described in literature by British drug sector scholars as well as by European colleagues as pioneering and a site of some of the earliest recognizable harm reduction activity on the continent [1, 2]. Harm reduction itself has no particular definition and its deviating interpretations have already been debated elsewhere [3, 4]. We adopt the Harm Reduction International (formerly known as International Harm Reduction Association) definition of ‘harm reduction’ and its characteristics described by National Harm Reduction Coalition (NHRC) and UK Harm Reduction Alliance: harm reduction as a practice is concerned with the agency and autonomy of drug users, and thus to be considered harm reduction, a health intervention must not only seek to reduce drug-related harms but uphold drug users themselves as the primary drivers of this change [5].

Drug users are understood as agents of change in a variety of ways. One is that at the individual level, harm reduction tactics are adopted by individual drug users consensually and as is appropriate to their given needs, wants, and circumstances. The health harms faced by a drug user are reduced by their own actions, making them an agent of harm reduction. Another interpretation is that drug users are collectively agents of harm reduction, as they influence or make demands of their broader drug system to produce the harm reduction services they wish to see, and thus change the structures which make them vulnerable to harm, reducing their collective risk in the future. These interpretations are not clearly divided in daily life, and in fact other accounts of drug user activism strains such as narco-feminism name a form of “embodied activism” as “resisting ‘service modalities and delivery systems that are disempowering, controlling and paternalistic’” as a means to changing both drug policy as well as one’s own subjectivity [6, p.728].

This latter focus on the collective is concerned with what we consider to be a form of ‘drug user activism’ or ‘drug user organising.’ For our purposes, drug user activists are the individuals or “associations that are aimed at changing local or national drug policies and that are – or claim to be – either organised by or work for their constituency” [7, pp.20–21].

Drug user activism is a key component of harm reduction, as we have set out above. Where, then, are these activists featured in the history of British harm reduction specifically? This question is not one our paper seeks to answer directly; however, it is the very question that sparked the inception of this paper and one to which we hope to offer some insight. The challenges in answering this question are steep and numerous. These include the problems of delineating what falls under ‘British harm reduction,’ what counts as evidence, how to write a history and how to recover the history of a repressed and largely underground group. We expand on each of these matters below to situate the aims and the findings of this paper, which recounts the conceptualisation of drug user activism present in the existing literature on British harm reduction.

The history of ‘British harm reduction’ is itself a contentious topic because harm reduction itself has no fixed definition. Amongst the past and present interventions, events, and entities which we recognise as harm reduction (fitting to the Harm Reduction International definition, or the National Harm Reduction Coalition (NHRC) principles) many of those things do not self-define as harm reduction, and even where they do, their existence is not clearly and consistently documented. Second, the published histories of harm reduction, like all published academic works, are filtered through institutions which validate specific forms of knowledge and evidence and reject others. This critique has been made of drug research more broadly regarding the epistemic injustice against people who use drugs [8]. In order to address this matter in our own work, we look beyond academic works and include grey literature such as drug sector websites and online publications within our array of relevant historical documents. Widening the parameters for what we include in our body of drug user literature does not entirely resolve the issue of epistemic injustice. More broadly, questions remain of the archive’s completeness or resemblance between the narratives it presents to the occurrences from when those texts were written. As Freire asserts,“[a]ll archival sources are at once primary and secondary sources: neither raw nor fully cooked. but richly textured as both narrative and meta-narrative, as both archive and history-in-the-making.” [9, 10, p. 94] Grey literature is not free from the hegemonic forces which promote specific drug user subjectivities or forms of knowledge production. Seeking an agentised drug user figure from a corpus of literature largely produced under conditions that view drug users as lacking full agency requires critical engagement with all sources.

There are several developments in the social sciences which influence our own approach to this project. Within the field of historiography, our approach is informed by, but not a form of, “history from below.” [11] Our approach to the matter is also informed by the field of subaltern studies. We do not go so far as to label our subject of concern as subaltern. However, the subaltern subject and the drug using subject are both described in flat terms that limit their agency. Prakash describes this stripping of agency, drawing from “theorists… whose writings cast a shroud of doubt on the idea of the autonomous subject,” and calls for scholars to tailor historical and theoretical approaches to the specific conditions of colonial subalternity [12, 13, p. 80].

The question of the “autonomous subject” [13] is one of relevance when examining drug user subjects. Traditionally, drug users have existed outside of the “liberal conceptualisation of the sovereign individual expressed in the dominant discourse of human rights.” [14] This is because this conceptualization:

is centered on ideals of autonomy and rationality, which are presumed to be the necessary attributes of full subjectivity and the basis of individual moral agency. Contemporary understandings of addiction as a disease of the will, in which the addict loses control over her behaviour and her life, produce the addict as virtually the opposite of the rational, autonomous individual [15, p. 146]).

While these two figures are at odds with one another in our own and Keane’s distilled definitions, in the texts that we visit there is rarely the context to make a clear delineation between them. Furthermore, both of these figures are shaped by overlaps in various discourses referred to as ‘narratives of deficit’ including discourses about risk, trauma, criminalisation and pathologisation [16]. These narratives of deficit are hegemonic in contemporary drug-related literature and can obscure the type of figure, be it the addict or the activist, that we are trying to trace. This is because it is unclear what sort of relationship is being assumed between the particular deficit area and drug use itself.

For instance, in Bacchi’s 2015 piece on “Problematizations in Alcohol Policy,” she notes that in some policy papers regarding alcohol, poverty is mentioned as a ‘social problem’ relevant to alcohol. Bacchi notes that “the assumed causal pathway is often that alcohol consumption causes poverty and unemployment, rather than the other way around” [17]. Similarly, we can see how narratives of deficit could work to reinforce Keane’s “addict” figure, as someone sick or traumatised to the point of lacking capacity and without full autonomy. Equally, these narratives can work to the opposite, providing context to the circumstances which constrain the decisions and opportunities available to drug user activists as people already navigating vulnerablising environments, such as spaces of criminalisation and resource scarcity. Thus, when critically analysed, the texts that appear to focus on activists or potential activist-entities like ‘user forums’ upon first look can actually be seen to still be concerned with a subject more akin to Keane’s figure rather than the one we are seeking out here.

Finally, real world drug users’ daily lives are shaped through specific enduring manifestations of oppression, which include criminalisation, stigma, and discrimination. Drug user activists were not exempt from these forces, and as a result entities or individuals recorded as ‘drug users’ who have sought to make political and social change often have had to operate discreetly to mitigate individual risk. This poses a challenge to examining the written archive, one which we hope to mitigate in a future follow-up paper through conducting an oral history to complement the review we have conducted here.

Then, what is gained by exploring the archive if what we wish to understand ultimately is the history of British drug user activism, and we recognise all of the above challenges with the archive itself? Firstly, “subjective nuances in the archival structure”, as drawn from Mela Dávila-Freire’s exploration into the documenta archive, “provide glimpses into an intellectual construction that is otherwise hidden.” [10, p. 94] We do not view the materials we review as a mere list of objective facts to be chronologically ordered and summarized, expecting to input the resulting data points into an algorithm that outputs a precise answer to the history of drug user activism. Instead, we consider the contradictions, gaps, and the evolution of terminology in these materials as valuable data in themselves.

In order to account for the history of activism in this space, we must first understand what already exists in the written record, what is excluded from it, and where contradictions lie. These components can then be reread to uncover the emergence of the figure of the drug user activist. This article asks, how has the conceptualisation of drug user activism present in the existing literature on British harm reduction evolved over the years?

Methods

This article is a literature review of documents that refer to the conceptualisation of drug users in the UK throughout various points of the UK harm reduction movement. The review included published journals, grey literature, and various forms of media available on the internet. Inclusion criteria for the materials include focus on substances deemed illicit and those that refer to drug user organisations or activists. Materials that are from outside of the UK and those that refer to harm reduction initiatives for alcohol, vape, or tobacco were excluded from the study.

Published journals were initially scoped from academic databases (Medline-OVID, Scopus, Web of Science) using the following key terms: “United Kingdom”, “harm reduction”, “substance use”, “drug users”, and “civil society”. The search yielded articles that have little to no relation to the topic of interest. The researchers sought help from an academic librarian who confirmed the sparse literature on the topic in existing online databases. As a workaround, manual searching was done in websites of academic journals related to drug policy: International Journal of Drug Policy, Harm Reduction Journal, and Addiction Research & Theory. A Google Scholar search was also done to supplement the results from the manual search. The articles were screened using their titles and abstracts which yielded 61 articles. After reading through the articles, 17 articles were excluded from the study due to lack of relevance to the research question. We also collected grey literature which included drug user publications, unpublished academic work, websites, podcasts, and videos. 54 grey literature were collected, most of which were websites. These materials were collected from publications from harm reduction advocacy groups and materials volunteered by drug user activists during the community engagement phase of the project.

After collecting the literature, content analysis was done, and all three researchers discussed how to best present the conceptualisation of drug users. Given that the goal of activism is to engage the status quo and work to transform it, we decided to present the conceptualisation based on key points in the harm reduction movement, in drug policy, and alongside leadership changes in the UK government. While the divisions in the timeline may seem arbitrarily set, we believe that timeline set matches the change in conditions which would impact drug user activists. It also aligns with the oral accounts given by drug user activists during the community engagement phase of the research.

We present the literature review findings in the chronological order of the time period the pieces are concerned with, rather than the date the pieces were authored. However, this does present challenges in knowing the exact starting date of the concept of the drug user activist. In general, writings about particular time periods tended to share conceptualisations of drug user activism where any potential mention of drug user activism did arise. This method of displaying results is also most clear for conveying the evolution of the figure of the drug user activist.

Results

Pre-misuse of drugs Act (1870–1971)

There is no fixed point the history of British drug use begins, but drug use becomes more mentioned in the literature from the Victorian period [18]. As Crane writes;

The 19th century was a crucial period of drug-taking development both in terms of potency and plurality. The Victorians took not just alcohol and opium but cannabis, coca, mescal and, with the invention of the hypodermic needle in the 1840s, morphine and heroin. The 19th century also saw the origins of drug control, and the medicalisation of addiction to these substances [18].

We began our search for references to things which might be considered precursor concepts to British drug user activism in the Victorian period because this is the period where both drug controls begin and also where the figure of the ‘addict’ is born [19]. In the academic literature, this period is characterised by the liberal prescribing of drugs by health professionals, documented overdose deaths, and sudden turn to conservatism due to shifts in international drug policy.

Between 1900 and 1920 s, various drug-related deaths have been documented. Women coming from the higher echelons of society and the entertainment industry were the usual deaths documented. These series of deaths caught headwinds of the media causing “drug panics” on the part of the public [20].

Prior to the passage of the Dangerous Drugs Act in 1920, control of substances such as cocaine, morphine, and opium had been minimal. Access to these substances was made through valid prescriptions from a health worker [21]. Prescribing has been so common to the point that prescribing drugs to patients was an accepted part of the practice of medical professionals in the UK which some might refer to as the “British System”. The British health ministry committee sanctioned it as a treatment of last resort for people where complete abstinence is not possible. One of the most notable practitioners is Lady Isabella Frankau, a psychiatrist, who was said to be generous in prescribing heroin to her patients [22]. While this practice was considered legal, practitioners like Lady Frankau encountered opposition among their colleagues who advocated for greater restraint in prescribing drugs [21]. Some argue that doctors profiteered from providing these prescriptions which contributed to the increase in the number of people dependent on the substance [23].

The policy towards substance use started to shift in the 1970s which was influenced by the declaration of “war on drugs” by the United States and the passage of the Convention on Psychotropic Substances in the United Nations. In the following year, the Misuse of Drugs Act was passed in the UK [24]. Substance use policy shifted in the 1970s with the US ‘war on drugs,’ the UN’s Psychotropic Substances Convention, and the UK’s Misuse of Drugs Act, whose ‘failed experiment’ still shapes UK policy and culture today [25, 26].

In this period, two conceptualizations of drug users have been described by Hallam (2016). Drug users in the 1930s were described as victims of drugs who were mostly middle-aged, from educated backgrounds and usually dependent on morphine. Most of them are painted as non-problematic drug users. In contrast, the drug users after 1960 were described as young, working class, and dependent on amphetamine, LSD, and cannabis. Most of them were implicated for drug-related offences [27, 28].

There were no drug user organisations that figured in published literature except for an alcoholic anonymous group who met in London in 1947 [29]. The actors engaging in the drug policy space were mostly charities. Kaleidoscope, founded in 1968 in Kingston upon Thames, was the first charity to establish the first syringe and methadone dispensing service [30]. Phoenix House and Release provided services and campaigned for the rights and welfare of people who use drugs [31]. Kaleidoscope conducted outreach services in nightclubs such as needle and syringe exchange and substitute medication [32].

There is an emergent type of drug user activism in this period, in the sense that entities campaigning on the rights of people who use drugs, taking actions to promote social and political change on behalf of people who use drugs, become present at the end of this period. This, however, does not satisfy the definition of drug user activism put forth at the start of this paper, where the actors we are interested in need to be drug users themselves. Regardless, the terminology of activism does not feature in the literature about this period.

Misuse of drugs Act (1971–1988)

The passage of the Misuse of Drugs Act signalled the adoption of more conservative approaches towards drug use by the government. This had a knock-on effect on British medical institutions’ practices and directly onto drug users as a result [33]. In the same period, there is a newly expressed noticing of the agency of drug users in ensuring safety among their peers via the “user association groups.” [31].

The first shift noted is the curbing of drug prescribing of medical practitioners. Dr. Ann Dally, a physician who set up the Drug Dependency Improvement Group in London, eventually lost her licence for overprescribing drugs [33]. Dr. John Marks, a psychiatrist in Northwest England, eventually closed his clinics after political pressure from his colleagues working in addiction psychiatry and local politicians [33].

The first drug user groups started to organise themselves in the 1980s. They were referred to in the literature as “user association groups” [31]. They campaigned for the rights of drug users and conducted peer-to-peer needle syringe exchange programs. One of the well documented ones is the Drug Dependents Association, founded in 1983. The Drug Dependents Association’s agenda was to influence how the clinics were being run while strengthening their organisation. They set meetings with clinic staff where they were able to raise their agenda on how the services can be improved. However, this initiative died down allegedly over personal issues among members, growing frustration among members on the progress of their cause, and difficulty in maintaining a “respectable” demeanour during their engagement with the clinic [31].

In the same year that the Drug Dependents Association was being organised, in Liverpool, two men both named Allan, Allan Matthews and Allan Parry, met with Professor John Ashton and Howard Seymour of the Mersey Regional Health Authority to discuss the possibility of a drug education centre and began interviewing local drug users to shape how that centre would be designed [23]. They set up the Merseyside Drug Training and Information Centre (MDTIC, currently known as HIT) and appointed Dr. John Marks, whose clinics were previously shut down, as its medical director [34]. Allan Parry became the centre’s first director [35]. The MDTIC created a non-threatening environment, provided information on how to keep drug users safe, conducted syringe exchange programs [36], and connected drug users to various services. The centre’s proximity to the Liverpool Drug Dependency Unit (LDDU) facilitated access to methadone and heroin [37].

In Scotland, needle exchange schemes were expanded following the release of the McClelland Report of the Scottish Committee on HIV and Injecting Drug Misuse in 1986. The report concluded that the confiscation of needles and syringes from users by the police was pushing people to share needles. This led to opening of programs in Liverpool, Peterborough, and Sheffield [38, 39].

In Northern Ireland, there are current gaps in literature on drug user organising efforts. However, McElrath (2009) described how drug users gained further social disapproval due to “anti-social activity”. This was compounded with allegations of drug users sharing information about the Republicans’ activity in their area when arrested and how they contribute to Loyalist earnings by buying drug supply from loyalist paramilitary groups [40].

In this period, there is a growing understanding of the links between social deprivation and substance use, such as Buchanan (2006) who notes the multiple intersecting deprivations that contribute to substance use and points out the need for more social services to complement biomedical interventions [41]. These links are further complicated by political struggles such as the case in Northern Ireland where drug users had to contend with allegations of sharing information and the rise of HIV in Liverpool [40]. As a response to these developments, drug users exercised greater agency to improve how services are being delivered with some drug users being in the forefront of what would later be termed as the public health approach to drug use.

Thatcherite and AIDS crisis (1988–1998)

The Conservative government under Margaret Thatcher prioritised responding to the HIV crisis over drugs which signalled greater openness to public health approaches.

In 1988, the HIV rates continued to rise, primarily affecting injecting drug users as well as gay and bisexual men and people who underwent blood transfusions, particularly Factor VIII [42]. As a response to this, the Conservative government of Margaret Thatcher acted on the recommendation of the Advisory Council on the Misuse of Drugs to prioritise addressing HIV epidemic over controlling heroin use [43]. Some assert that this was due to the high cost associated with treating HIV and a personal contact from within her party who was supporting the harm reduction movement [23]. This direction led to a more proactive approach towards recruitment of drug users from the government. By initiating contact with a government agency, they believed that “drug misusers” will be better educated on the risks of HIV which would allow them to modify their risky behaviours [44, 45].

While these shifts were happening, drug user organisations contributed in efforts to address the HIV crisis. An organisation called Mainliners, founded by Irish drug user John Mordaunt and people from the Phoenix house, conducted needle exchanges and distributed condoms to drug users [46]. Drug user networks also collaborated with each other [31, 47]. Drug users in London, Hertfordshire, and “Midtown” shared practices to reduce risks associated with drug use and distributed safe drug paraphernalia amongst themselves [31]. In contrast to previous fragmented efforts of individual activists, this period marked greater cooperation and solidarity among drug user organisations from different locations.

Another phenomenon noted in this period is the consolidation of drug user organisations into formal charities. For instance, Kaleidoscope, Drugaid, and Gwent Alcohol Project worked together to establish the Drug and Alcohol Charities Wales (currently known as Developing a Caring Wales) [32]. Upon death of Jon Mordaunt, his wife Andria Efthimiou-Mordaunt founded the John Mordaunt Trust, an organisation that amplified drug users voice, provided support for those infected with HIV, and campaigned against the criminalization of drug users [46].

In Liverpool, collaborative efforts by Ashton, Seymour, and Parry continued despite opposition from the local council and community [23]. The syringe exchange program expanded to include delivery of primary care services such as HIV testing, treatment for soft tissue infections, and hepatitis vaccinations were given. The Drug Dependency Unit expanded from providing detoxification to maintenance prescribing. This led to increased utilisation of services by drug users [35]. This later on became known as the “Mersey Model for Harm Reduction” which highlighted the public health approach as a component for harm reduction. In 1990, the MDTIC launched the First International Conference on the Reduction of Drug Related Harm. This conference provided an avenue for various stakeholders to discuss harm reduction practice [37].

By 1995, under the government of John Major, the Conservative government launched a new policy entitled Tackling Drugs Together: a strategy for England 1995–1998. This strategy devolved the national government’s responsibility to local governments to meet nationally set objectives [48]. This strategy also strengthened the associations between drug use and criminality [49]. Monaghan (2012) termed this the “crime-phase” of the UK drug policy in contrast to the “health phase” during the time of Thatcher [48].

In this time period, Zibbbel (2003) describes two shifts in terms of how a drug user is conceptualised. First, a drug user is conceptualised as a consumer of health services. He posits that as a consumer, the drug user should be able to make responsible choices as a competent individual. This contrasts with the former and more paternalistic conceptualisation where the drug user received substantial support from experts in terms of decision making. This approach aligns well with the neoliberal ideology where the role of professionals is decreased as a cost containment strategy [45]. Second, a drug user is conceptualised as an “expert patient” whose expertise grounded from one’s lived experience is valuable in policy making and development of programs [45]. Both conceptualizations changed the role of drug users over their own health. On one hand, the recognition as an expert contributed to increasing their capital which could lead them to exercising greater agency, giving way to more potential drug user activism. This also facilitated shrinking of the role of the professional and the state’s medical apparatus in delivery of services. At the end of this period however, upon the assumption of a new government in 1995, drug users were slowly being seen as criminals rather than partners in the delivery of care, reducing the space for activism and without previous sector allies from the professional world in post to defend their previous “expert patients” [45].

New Labour and Internet (1998–2010)

The New Labour government did not depart much from the previous government’s conservative approach to drug use. The New Labor Agenda promulgated by Tony Blair prioritised drug treatment and criminalization of drug users [46], mirroring the United States approach to substance use in the same period. Blair appointed Keith Hellawell, a former police officer, as the Anti-Drugs Coordinator or commonly referred to as the “Drug Tsar” who would oversee the initiatives on enforcement, prevention, education and treatment [50]. In 1998, the government launched the Drug Treatment and Testing Order which aimed to increase the number of people enrolled in drug treatment and enable people to overcome dependency and minimise initiation or recidivism of crimes. They targeted highly ambitious goals of having a 100% positive impact on health and crime in 2008 [49]. They aimed to expand opioid agonist treatment with the goal of reducing criminality [43]. This shift effectively crowded out efforts to address the HIV crisis which was still prevalent at that time.

After failing to deliver on the intended results, the Drug Tsar was removed from office and the government established the National Treatment Agency (NTA) for Substance Misuse [51]. The agency was formed as a cooperation between the Home Office, Department of Health and UK Anti-Drugs Coordinating Unit (UKADCU) [52]. It was tasked to deliver both the public health and criminal justice agenda of the government [53].

The creation of the NTA ushered greater participation of some segments of the drug users in government. The NTA provided direct financial support and widened the forms of participation of drug users in government. Some agencies provided seats for drug users in their governing bodies while some were hired under paid support staff in local treatment agencies [31, 54]. They also conducted national and regional service user forums regularly [53] where service users can deliver presentations and assist in writing policy documents [45, 55]. It was also in this same period when Methadone Alliance, an alliance of service users and professionals, was founded to advocate for substitution treatment. Some of their efforts included running a helpline, developing peer advocacy programs, and lobbying service providers and policy makers [56]. These efforts led to a wider representation of drug users in shaping drug policy [57].

Since the NTA is tasked to implement criminal justice initiatives and advocated for mandatory treatment, this inevitably led to tensions within the movement [53]. This led some user groups to continue campaigning for rights of drug users and their right to use drugs independent from the NTA. Organisations such as Black Poppy, User’s Voice, Alliance, and Transform coordinated at the national level through the internet and through publications [31].

One of the most prominent coalitions was the UK Harm Reduction Alliance (UKHRA), a campaign coalition of drug users and workers in the substance use field that aimed to champion public health and human rights in drug treatment and service provision. They set up various email discussion links based on specific drug policies (needle exchange) and sectors (women, young people and drugs, users) [58]. UKHRA was responsive on key domestic drug policy issues such as computer-generated prescriptions for controlled drugs, difficult to reuse syringes (DTRS), and diamorphine shortage. It was also active in participating in international campaigns in the Commission on Narcotic Drugs and solidarity work, such as during the arrest of a drug user activist in Denmark and in extra-judicial killings of drug users in Thailand [58].

In 2007, the Drugs and Health Alliance was founded with the following members: The Alliance, the Beckley Foundation, the International Harm Reduction Association (IHRA), the Kaleidoscope Project, Release, the Socialist Health Alliance, Plymouth Public Health, Development Unit and UKHRA. The coalition advocated for more evidence-based approaches and the need to reverse criminalization of drug users [58].

In 2005, the NTA was rumoured to be closing after being flagged by the Audit Commission on issues regulated to performance management arrangements [59]. In anticipation of possible changes in the NTA, service users founded the National User Network [53]. This was spearheaded by Grant McNally, founder of the UK Assembly on Hepatitis C; Andrea Ethimiou-Mourdant of the Mourdant Trust; and Eliot Albert of UKHRA. John Howard of Reading User Forum and Simon Parry of Southampton-based user group Morph were appointed as co-chairs. The network aimed to promote user involvement in service delivery and policy development. It covered both licit and illicit substances. They provided a space for mutual support as well as active engagement with policymakers [60].

Just as drug user groups were gaining greater influence, the Centre for Social Justice, a conservative political think tank, released a series of reports with the theme “Breakdown Britain” in 2007 which questioned the effectiveness of methadone in the treatment of drug dependence [61, 62]. The following year, under a new Labor Prime Minister Gordon Brown, a new drug strategy was released under the title Drugs: protecting families and communities. The strategy highlighted the responsibility of drug users to enter treatment and reintegrate back into the community through becoming drug-free [48]. This approach entailed making government support for people who use drugs conditional on the ability of drug users to meet their responsibilities [49, 63]. The government of Scotland mirrored similar points emphasising on a drug-free life and the need for drug users to be productive members of the society [62]. Finally, in this period, David Nutt, a high-profile drug reformer and academic was removed from the Advisory Council on the Misuse of Drugs (ACMD) for speaking against the classification of various substances controlled under the Misuse of Drugs Act 1971 as being unscientific. After his removal, two members of the ACMD resigned in solidarity, attracting headlines as a form of “collective action” against the New Labour home secretary Alan Johnson [64].

The end of this period of drug policy history in the UK was a difficult one for engagement of the government by drug user activists. The literature does not reflect on the content or mood of engagements between these entities, but we have good reason to exercise a more critical view of the interactions between these entities and delve deeper in later work to what happened to drug user activism in this period, especially as this period is known for the formation of many coalitions of drug user and drug user servicing organisations. There is also a need for the harm reduction movement to know what was happening internally and externally to these organisations, as many did not survive to today.

Contemporary (2010 to present)

The change in government in 2010 cemented the abstinence recovery agenda. The Conservative and Liberal Democrat coalition government launched a new drug strategy called Reducing Demand, Restricting Supply, Building Recovery: Supporting People to Live a Drug Free Life. [65] This strategy covers dependency for both licit and illicit drugs which were both understood to be harmful to society [48]. It also promoted abstinence as the only indicator for full recovery of a person with drug dependency.

National budget cuts were noted in this period which undermined not only the provision of treatment but also implementation of harm reduction programs [66]. Guided with this agenda, the NTA organised a group of experts to provide guidance on ending harm reduction approaches such as methadone prescribing [67]. The government shifted the responsibility for the provision of drug services from primary care trusts to local governments despite having very limited funding [68]. These developments ultimately led to increased mortalities and decreased utilisation of services [69]. In response to this, the UKHRA, the National Users Network, and the Recovery Federation criticised the strategy for not being aligned with the current evidence in the field. They warned that these actions may lead to perverse consequences [62].

In 2013, the NTA was consolidated with other agencies under Public Health England [70]. Methadone Alliance was likewise dissolved [71]. No documents or statements have been collected from the big drug user organisations since then. The following years noted an increase in the number of drug-related deaths which prompted the distribution of naloxone. However, the scope of distribution was highly limited by resource constraints. Scotland was likewise experiencing an increase in overdose deaths and the worst HIV outbreak in 2019. This prompted Peter Krykant, a drug user activist, to open the first overdose prevention service in Glasgow. Using a mobile van, he provided drug users with needles, syringes, and naloxone [43, 72, 73]. Around the same period, the Take Home Naloxone programme was expanded which involved distribution of naloxone kits and training on how to manage opioid overdose [74].

This period saw the decline of the harm reduction movement in the UK. Most of the efforts are continued through the efforts of individual activists who continue to provide services to keep their communities safe [75, 76]. Currently, there are efforts from individuals and drug user organisations to revive the movement given the continuous conservative policies, the austerity measures on drug services, and the increasing toxicity of drug supply in the UK [77, 78]. Discussions have started but this has yet to translate to a wide and energised drug user network that is able to effectively engage the elected government.

Discussion

The study is an initial attempt to understand the conceptualization of drug users in the academic and grey literature. While we were able to deduce some conceptualizations, we understand that the results are preliminary and would benefit from further discussions and academic work. One of the main limitations in answering the research question is the sparse literature on the topic. The limited findings from academic databases suggest there is limited literature written about the topic or that the literature written did not find its way into academic databases. We found that conducting a direct search on the website of subject-specific journals, such as International Journal of Drug Policy, Addiction Theory & Research, and Harm Reduction Journal, have been more productive in yielding relevant journals. This suggests that literature on drug users is highly limited to niche spaces and has not seeped in mainstream areas of academic interest.

We find that the published literature provided information on the historical timeline of harm reduction and a general sense of the conceptualisation of drug users. The majority of the resources were online articles. Very few books have been included in the study due to difficulties in accessing copies, particularly of older sources which have not been made digitally available. It would have been interesting, if time and resources allowed, to see how books would provide additional insights into the conceptualisations of drug user activists.

The grey literature is particularly rich as most of it is produced directly by or features voices of drug user activists. These pieces include old organisational websites, newsletters and publications from drug users, and unpublished doctoral dissertations from academics. Most of these have been collected from manual searches on the internet or nominated by drug users during the community engagement phase of the research. During the internet search, we also saw that the UKHRA maintained discussion boards on drug policy reform campaigns and sectors. We feel that the content of these discussion boards would have contributed additional insight in terms of how drug users conceptualise themselves. However, most of these boards were not publicly accessible. This highlights the need for more systematic efforts to retrieve and archive both online and hard copies of resources. The collection of data can potentially be useful in filling in the gaps in the timeline and provide some points for a more holistic understanding of the role of the drug user activists in the British harm reduction movement.

Of the UKHRA discussions that were retrieved, the majority focused on the description of developments in drug policy reform through different governments and the development of harm reduction as an approach to substance use. The organisation of and initiatives by drug user activists were only mentioned in passing. There was little to no information on how they started, who were involved, how the organisations related to each other, challenges they faced, and their reasons for subsequent inactivity. The highly fragmented nature of this data makes linking the drug policy timeline and the drug user movement and drawing out the conceptualisations of drug user activism more difficult. During the community engagement phase where we presented the data we scoped to six drug users, UKHRA came up constantly, however there were many gaps in the reasoning for its importance, the time it was considered most important, and also contentions raised regarding the broader activist history and how drug user activists were portrayed.

Another challenge is that the literature on drug users is usually very specific to the location where they are in. For example, efforts by Allan Parry and the public health professionals have provided insight to the initiatives done in Liverpool. Very little literature would mention what is currently happening in Wales or Northern Ireland, or even the neighbouring city in Manchester, at that same point in time. Thus, conceptualisation of drug user activism cannot be separated from its local context. This presents challenges in understanding the drug user movement at the national-level given the limited literature. We also begin to reflect if there is actually a “national” drug user movement at all that can be described and if drug user efforts have largely been confined in geographic silos.

Another contentious topic that needs to be parsed in the conceptualisation would be the difference between engagement and activism. The former refers to how the drug users have worked with the state to develop policies while the latter describes efforts to change the status quo. Drug user engagement with the state has arguably led to some gains such as increasing platforms of service user engagement in the development of policies and services. A concrete example of this would be how the drug users have worked with the National Treatment Agency who provided seats for drug users in their governance bodies. However, some would also find that drug user engagement with the state leads to a form of co-optation where they subscribe to the prescribed approach developed by the state. This crowds out “activism” where drug users challenge the status quo by advocating for more radical approaches to substance use and other efforts that address the structural factors that lead to their oppression.

Despite limitations on data and the methods employed by the study, we have traced several moments of the documentation of drug users exercising their agency. This can be seen in how they organised themselves to keep their communities safe, contributed to the knowledge on harm reduction, and asserted themselves as activists in drug policy reform. Drug users were able to publish in reputable academic journals which were mostly thought of as spaces for the academic elite. While they are only a handful, this points to the idea that the categorisation between academic and grey literature, where the former is thought of to be the space of academics, and the latter, a space for people with lived experience, may at times be blurred. In fact, academic publishing can be a space for contestation by drug users themselves, especially that the conceptualisations in academic literature inevitably influence how the drug user community is being perceived.

The limitations in data and methodology points to the need to supplement this piece. We conclude that an oral history with individual interlocutors and members from previous organisations of drug users is very much needed. This study would fill in the gaps in the timeline, elaborate more on the history of drug user activists and organisations, and further nuance the conceptualizations from academic and grey literature directly from the perspective of those who have been in the movement. We would hope to not only expand the archive with this follow-up work, but highlight specific recommendations and calls to action for the ongoing development of the British harm reduction movement based on the knowledge shared from interlocutors and gleaned through ongoing interrogation of the archive.

Conclusion

The conceptualisation of British drug user activism in literature has changed alongside the social context and developments in drug policy across time. In the 1900s, we saw the shift in the portrayal of drug users from victims coming from privileged backgrounds to middle class individuals who displayed problematic behaviours. After the passage of the Misuse of Drugs Act, drug user activists started to emerge and organise themselves to deliver education and outreach services. This coincided with drug users experiencing increased criminalization and more limited options for accessing drugs, as prescribing practices became more conservative.

The drug user activist figure further emerges during the AIDS crisis and Thatcherite era, where drug users were involved in developing what later became the model for the public health approach to substance use. Drug user engagement with the government was strengthened during the New Labour government with the formation of the National Treatment Authority. Outside of government, drug users formed various alliances which were crucial in ensuring accountability from the government. Upon the abolishment of the NTA, the organisations of drug users weakened. Drug user activists continued their initiatives albeit on a smaller scale while still trying to rebuild the drug user movement. Some drug user collectives such as the Methadone Alliance collapsed as their aims were fundamentally incompatible with the post-NTA political landscape, while other local groups survived through adopting the language and goals of the abstinence agenda [79]. In the current period, harm reduction drug user activists exist unincorporated into organizations, with notable figures such as Peter Krykant Mcleod mentioned above, as well as Anna Millington and Mat Southwell, frequently featuring in recent drug user activism-related media, and conference events [80, 81]. Meanwhile, drug user organizations largely exist in the form of ‘Lived Experience Recovery Organisations’ or LEROs, which emphasis their membership having lived experience of recovery, rather than existing experiences of drug use [82]. The conceptualisation of a drug user activist is more present than ever but also more individualized, perhaps reflecting a broader trend of neoliberalisation of the British drugs landscape, all the way down to current rational individual activist Fig. [45].

Despite the chronological order of the events, the generalisability of these conceptualisations are bound by multiple challenges. These include differences in definition of terms, lack of robust historical accounts, and the lack of input of drug users in literature about their own community. Additionally, as discussed in the introduction, the findings are limited due to the traditional criteria of what can be counted as historical evidence and what has been welcomed versus discarded from the harm reduction archive, and the related challenges of recovering the history of a repressed and largely underground group. Thus, there is a need to follow through with this preliminary work to better understand the role of drug user activists in the history of harm reduction in the UK.