Starting Drug User Groups – The Craft of Drug User Organising


Mat Southwell describes a technical model for starting a drug user group that is based on the direct experience of Coact, a peer-led technical support cooperative, and the shared experience of others involved in running or supporting community mobilisation among people who use drugs.

Community mobilisation among people who use drugs (PWUD) covers two separate but connected areas: drug user organising – the self-organisation of people who use drugs and meaningful participation – the involvement of people who use drugs in the planning, commissioning, delivery and review of harm reduction and drug treatment services.

Community mobilisation with PWUD can take many forms as a review of the <History of Drug User Organising> illustrates. Importantly, models of community mobilisation will necessarily need to be tailored to fit the local context and this highlights the important local expertise that is held by country drug user activists. However, this article puts forward a process model that can support the start up phase of a local drug user group.

The Investment Framework published in the Lancet in 2011 by a group of global public health strategists provided a critical analysis of the HIV response and identified the actions and investment required to end HIV as a global epidemic. Importantly, community mobilisation was identified as one of the critical enablers required to support the basic harm reduction programme interventions that are the evidenced-based HIV prevention strategies for people who inject drugs. Critical enablers are “complementary strategies to increase the effect of basic programme activities” that are “crucial to the success of HIV/AIDS programmes”. This locates drug user organising as a key part of the HIV response with PWUD. Of course, drug user organising can also contribute to other policy and practice objectives affecting the lives of people who use drugs but this UN endorsement of the ‘craft’ of drug user organizing is an important step forward.

The authors of the Investment Framework call for a ‘strategic revolution’ and securing the required investment in community mobilisation and deepening meaningful participation will require a revolution in the actions of many policy makers and service providers. However, community mobilisation specialists also need to approach drug user organising with a professionalism informed by forty years of community mobilisation among PWUD.

Community mobilisation can be initiated in two different ways. This has been described as:

  • Spontaneous development – where drug user come together to self-organise with momentum coming from one or more drug user activists often with transferable experience from other social struggles.
  • Contrived spontaneous development – where drug users self-organise or are supported to mobilise with encouragement from harm reduction or drug treatment providers.

Increasingly PWUD are providing the inspiration or technical support to those starting up drug user groups. This can be part of programming initiatives from representative regional or global drug user networks (International Network of People who Use Drugs – INPUD model), technical support to harm reduction and drug treatment programmers (Coact model), capital-based drug user groups supporting drug users from other regions to self-organise (ASTAU opioid substitution therapy (OST) association in Ukraine), or twinning initiatives developed by national networks (Australian Injecting & Illicit Drug Users League – AIVL in Asia or Autosupport des Usagers De Drogues – ASUD and Médecins du Monde – MdM in Francophone Africa).

In discussing the importance of community participation in peer education, Trautman drew a distinction between ‘peer education’ and ‘peer support’. He defined peer education as drug users being used to deliver professionally designed programmes placing value primarily on their ability to access their network. By contrast, Trautmann describes peer support as a process of engaging the community in the design, delivery and review of the peer programme. This is shown improve the sensitisation of the programme to local needs and to generate a greater sense of ownership within the target population. Therefore, it is important to ensure that drug user groups are developed in a participative and empowering manner, regardless of the route that led to the launch the drug user group.

Coact has been working with different partners to develop capacity building programmes for drug user activists and their partners on community mobilisation with people who use drugs. The following model was developed to transfer our learning from working with Bridge Hope and Health Organisation in Afghanistan to a new partnership with peers and partners in South Africa.

Table: Technical model for starting drug user group

Enabling visit or community meetingGathering of PWUD – spontaneous peer led or facilitated by harm reduction or drug treatment partner. External expert can be brought in.

NGO, online and peer networks used to advertise and engage participants.

Peer leader or external expert is looking for natural community leaders who have standing within local community.

Development meeting creates forum to draw together and assess potential community leaders.

Concept Note developed to describe the project and the roles of different partner if external expert model.

Founding Statement developed by the group if spontaneous model.

Country partnerHarm reduction network or NGO host identified to be in country ally with right values and technical skills set for the drug user group.

Hold money and contracts while organisational experience and systems are developed.

Drug user leader/s build effective partnerships with country partners.

First level technical support on skills like budget or project management, harm reduction interventions, etc is best provided in country in shared language.

MOU established with country partner   describing relationship, setting quality standards and identifying how partnership can be ended – ensures ongoing assent.
Leadership developmentSpecialist leadership coaching for drug user leader/s provided through a mix of country visits and virtual coachingThe coach provides a space to review progress and support troubleshooting between drug user activists.

Coact offers advice and identifies potential strategies but supports local ownership of decision-making.

MOU established with leadership coach describing relationship, setting quality standards and identifying how coaching can be ended or the coach replaced.
Community consultationQuestionnaire developed with peer leaders

Protocol developed to describe delivery of questionnaire.

Consultation with key stakeholders to secure legitimacy around tool and protocol.

Questionnaire used as a tool to engage peers, gather their views and understand their needs.

Members recruited to join drug user group who share contact details.

Members receive ‘What We Stand For Charter’.

By also sharing basic demographic information when joining, members also become available for targeted consultations.

Key peers recruited and trained to work as peer researchers (deliver questionnaire) or peer recruiters (identify eligible contacts and bring them to an independent researcher)

The questionnaire reviews the lived experience of people who use drugs and their involvement in the healthcare and NGO system. It also identifies what peers want from the drug user group.

Strong membership base demonstrates that drug user group has the support of local peers giving legitimacy to advocates.

Extends the leadership group and builds their capacity and confidence – delivering the research helps move from an individual to a community perspective.

Peer ambassadors would be recruited to represent different peer groups or local drug scenes. This group would be developed as peer educators. They would form an early warning system around new drug trends, risk behaviours or threats to people who use drugs.

Situation assessmentQuestionnaire developed to interview providers of local harm reduction, drug treatment and other professionals with roles that impact on the lives of PWUD.Snowball model applied to help peer interviewers network with local policy makers and providers of health and NGO services.

Opportunity for drug user advocates to engage key local stakeholders.

Map local services
and secure working relationships to support future individual advocacy or partnership work.

Power map developed to identify and document their areas of expertise and contact details to support future advocacy or partnership working.
Capacity buildingFindings of the community consultation and situation assessment fed back to local peers and partners.

Key peer leaders, including the peer ambassadors, invited to capacity building event.

Review and analyse feedback from peers and incorporate recommendations in strategic thinking and advocacy planning.

Build practical skills sets of peer workers.

Strategic plan for developed for the drug user group including partnership strategy

Advocacy plan describing local, national, regional and global advocacy strategies including links with regional and global representative networks.

Communications strategyNeed to manage inward (members, peer workers etc) and outward facing communications (NGO or UN partners, donors etc)Monthly progress review blog from Development Worker.

Member stories – Mainline Magazine model of humanising peer group through telling life stories with stylish photos.

Development blog keeps donors, partners and members briefed on local developments.

This should be supported by a monthly members meeting to allow for dialogue.

Create empathic connection with key stakeholders beyond the statistics with personal story blog posts.

Resource mobilisationStrategy and advocacy plan informs resource mobilisation strategyIdentifies resources available through peers, friends and family and NGO networks.

Identify potential grants or donors.

Identify funding consortiums, technical support funds, or small grants schemes.

High profile engagement provides platform for crowdsource fundraising model.

Access to communications and IT equipment, office or workspace.

Access to client population through hosting focus groups or allowing community consultation to take in Drop In Centre or alongside outreach sessions.

Develop funding proposals that deliver on agreed strategic plan and / or advocacy plan.

Work-plan and budgetSet up work-plan and budget on free software (i.e. GoogleSheets)Monthly update and report of budget and work-planSupports effective project and budget management

Access to online budget and work-plan supports transparency

I hope others will find this model useful and that you will share your feedback and experiences with this development model so we can refine and develop it. We are at a key moment in the HIV epidemic for community mobilisation and there is a reinvigorated debate on global drug policy. It is key that drug users are able to self-organise so that we are active partners in addressing the public heath crises that impact our community while we fight to end criminalisation and promote the human rights of people who use drugs.

Mathew Southwell

Mat Southwell has worked in the drugs and HIV fields as practitioner, manager and activist for 25 years, in England and worldwide. Mat was an early harm reduction worker in the UK and in 1991 founded the pioneering Healthy Options Team (HOT), a harm reduction agency that employed peer workers and used community mobilisation strategies with people who use drugs. At present he works for Coact which is a team of technical support experts who are both drug users and drugs professionals. This dual background helps Coact build bridges and facilitate learning engagements between the drug using community and professional stakeholders in the drugs response.

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