The power of lived experience – a quick guide for alcohol and drug services

To encourage people to successfully engage in alcohol and other drug (AOD) treatment, services need to be safe, welcoming and non-judgmental.

One strategy AOD providers use to create a positive environment is to employ people with lived experience.

What is lived experience?

People with lived experience, working in AOD support services, have shared at least some experiences of clients.¹

For example, a needle syringe program might have staff members who inject drugs or have injected drugs. A treatment service might employ people with a history of drug problems. A service for parents of children who have overdosed may involve family members as people with lived experience.

People with lived experience have been there themselves, speak the client’s language and can relate to their feelings.

They are considered to be their peers and play an important role in creating safe, welcoming and non-judgemental services that successfully engage people in AOD treatment.^{2, 3}

People with lived experience can:

• help clients tell their story
• help with accessing the right services
• support navigation through health and welfare systems
• help to reduce stigma and offer support as an equal
• build genuine connections and positive relationships
• make change possible by sharing their personal experiences to inspire hope.⁴

What other roles can people with lived experience play?

People with lived experience have different names depending on their role.

You might know them as ‘peer workers’, ‘consumer workers’ or ’consumer representatives’.

No matter what their role is called, the principle is the same. These workers use their real-life experience, coupled with skills learned through training, to support and represent people impacted by drug use.⁴

They may support people one-to-one and they can also share their lived experience to represent their community more broadly.

For example, they might:

• work in high level management positions in drug use advocacy organisations, e.g. AIVL or Harm Reduction Victoria
• contribute to service planning, helping government decide what services should be available, where and to who
• participate in education programs to reduce stigma, e.g. Book a Speaker run by Victoria’s LiverWell
• join expert committees
• help AOD researchers decide what research is most important and how it should be conducted.^5-9

People with lived experience provide information and insights that can lead to smarter decisions, better policies, more efficient funding allocations, and more effective services.^{10, 11}

How can services involve people with lived experience?

Involving people with lived experience in organisations is a new way of working.¹¹

It requires time, relationship building and careful planning.

The wealth of scientific literature and publicly available information about involving people with lived experience in health services can seem overwhelming and it can be hard to know where to start. ^12-17

There are many online resources to support services in this process, including guides by organisations such as the Consumers Health Forum,18 as well as guides specifically for mental health and AOD services.^{11, 19-22}

• Guide to Consumer Participation in NSW Drug and Alcohol Services
• Treatment Service Users Project Final Report
• Straight From the Source

In Victoria in 2020, the Association of Participating Service Users (APSU) updated a practical manual for involving people with lived experience in AOD services.²² This resource is a useful starting point for organisations or health professionals interested in learning more about involving people with lived experience in the AOD sector.

Another useful step is to review your organisation’s current activities that involve people with lived experience. To help with this, the Network of Alcohol and other Drugs in NSW has developed a handy audit tool that assesses consumer participation in service delivery, policy and program development, access and equity, and capacity building.²³ Audit results can be used to develop action plans.

When it comes to incorporating people with lived experience into your program, the aim should be to gradually and sustainably increase the level at which they can participate.²²

Key factors for success include:

• support from the organisation’s leadership team
• a clear vision of the people with lived experience role
• adequate resourcing
• a dedicated program manager or coordinator
• a sound recruitment process.²

Lived experience in action

Looking at how other successful programs involve people with lived experience – either the clients themselves or as peer workers – can provide useful ideas that may work in your organisation.

There are actually many ways people with lived experience participate in AOD services.^{2, 19, 24}

One residential rehabilitation service asks clients for feedback in several ways:

• Client forms are always available for anonymous complaints and compliments, with this information being fed into service planning and staff feedback.
• Weekly group meetings for clients give them the chance to discuss issues and concerns. Client representatives then meet with the manager about those issues. The manager responds in writing, explaining what can and can’t be done about clients’ concerns and why.
• Every three months, all clients are invited to join staff at a meeting to review the service’s policies and programs.

Other services create paid positions for consumer representatives to contribute across all levels of the service’s decision-making.²⁰

One large metropolitan service worked with consumers to develop a Consumer Participation Program. This program sees part-time consumer representatives:

• support individual clients
• attend all meetings
• assist communication between clients and the service
• provide input into service management.

Read more

1. Health Consumers NSW
2. Lives of Substance
3. Australian Commission on Safety and Quality in Health Care