Guidance

Part 1: introducing recovery, peer support and lived experience initiatives

Published 8 September 2023

Applies to England

Introduction

Lived experience initiatives and recovery support services

Lived experience initiatives and recovery support services (RSS) support people in recovery and their families and benefit the wider community. They offer practical and emotional support to meet a person’s needs and build on their strengths.

Some RSS are delivered by treatment providers, some by lived experience recovery organisations (LEROs), and some by a combination of both. See section 7 below for more about LEROs.

RSS help individuals and their families to connect to wider communities of people in recovery, and in so doing help them to sustain and develop their recovery in the long term.

Why we need this guidance

Clinical guidance and best practice guidelines have highlighted the evidence for and value of peer support and recovery support in treatment systems. This includes a range of guidance from the National Institute for Health and Care Excellence (NICE) and other government agencies (for more details of these, see Part 4: glossary and resources).

The existing guidance shows why local areas should focus on lived experience initiatives and recovery support services. Until now the guidance about these issues has been disparate and there has been a need for a comprehensive set of guidance in one place. So, this guidance aims to provide that.

Also, the existing guidance focuses on peer support, self-help, community support networks and mutual aid for people in treatment and in early recovery. The focus of this guidance is on support for people who are at any stage of recovery, including people who have never accessed treatment.

This guidance does not replace any of the other existing guidance, but the scope and depth of this guidance is not available elsewhere.

Terminology about lived experience

Language used to describe terms related to lived experience can be inconsistent and confusing. So we have defined 2 main relevant terms below. Other terms used in this guidance are defined in the glossary.

Lived experience initiatives

In this guidance, we describe any service and support which people with lived and living experience are involved in delivering or leading as lived experience initiatives. Where a treatment (or other service) provider employs peer workers or volunteers, we describe the services or support they offer as peer-delivered. We describe the services and support provided by a LERO as peer-led.

Living experience and lived experience

Where people are currently affected by their own or a family member’s problem alcohol or drug use, we describe this as living experience. Where people and families are in recovery from problem alcohol or drug use, we describe this as lived experience. This is distinct from learned experience, which people can get through studying, practicing or exposure. People can, and typically do, have a mixture of both living or lived experience and learned experience.

Supporting people in recovery

Recovering from problem alcohol and drug use

What a person needs to support them in recovery is not very different from what every person needs to feel healthy and safe, such as meaningful activity, having friends and family that support you and living in a secure home. To overcome problem alcohol and drug use, people need to address their alcohol and drug use and create a life that is no longer built around it. To support people to do this, we need to develop and support cultures of recovery that provide alternative communities and activities that can offer lifelong support.

Recovery has a positive effect on individual people and those closest to them. It also has a positive impact on society. A UK survey of addiction recovery experiences found this includes reduced pressures on health, social and justice services and improved productivity (Best and others, 2015). Recovery is not only about stopping problematic behaviour, it’s also about wellbeing and making a positive contribution to society. For example, the survey found that people in recovery are twice as likely to volunteer as other members of the public.

A UK survey of life in recovery for families found that families affected by problem alcohol and drug use can both promote and support recovery and benefit from their family member’s recovery (Edwards and others, 2018).

Drug and alcohol treatment services

Drug and alcohol treatment services primarily support people to:

• reduce harm
• stabilise, reduce and in some cases stop problem alcohol and drug use
• promote recovery

A person’s initial treatment and recovery care plan typically involves reducing, or abstaining from, alcohol or drug use. From the outset, care plans should also seek to identify and build upon a person’s recovery capital to support positive outcomes from treatment.

National Drug Treatment Monitoring System business definitions for core data set Q define the recovery support interventions provided while someone is in treatment as:

… a range of non-structured interventions that run alongside or after structured treatment and are designed to reinforce the gains made in structured treatment and improve the client’s quality of life in general. Recovery support can include mutual aid and peer support, practical help such as housing or employment support.

Treatment interventions can kickstart the process of building recovery capital.

Recovery support services

RSS primarily support people to sustain their recovery in the community long term. These services help people to build on their strengths including the gains made in treatment if they have accessed it. This includes support to deepen their connection to recovery communities and wider community.

When someone has made the changes they want to their alcohol or drug use, and is in early recovery, recovery support services give more focus to further developing their recovery capital and recovery identity. This can:

• increase a person’s resilience to relapse
• optimise a person’s wellbeing
• help grow recovery communities

When people in recovery form a community, it makes recovery more visible and so can inspire other people. This has been described in research as the ‘social contagion of hope’ (Best and Lubman, 2012).

What we mean by recovery

Different definitions of recovery

People’s experiences of problem alcohol and drug use and recovery are personal and complex, so people’s recovery journeys and definitions of recovery differ. Definitions of recovery have traditionally included abstinence as a necessary condition (Witkiewitz and others, 2020). Research and contemporary definitions identify 2 core aspects of recovery (Kelly and Hoeppner, 2014). These are:

• overcoming problem alcohol and drug use
• building the resources (personal, social and community) that are necessary to start and sustain recovery, also known as ‘recovery capital’

Recovery capital

Recovery capital (Granfield and Cloud, 1999) is described as:

…the breadth and depth of internal and external resources that can be drawn upon to initiate and sustain recovery from alcohol and other drug problems.

It takes 3 different forms (White and Cloud, 2008), which are as follows:

• personal capital: examples of this include safe and secure accommodation, physical and mental health and wellbeing, and opportunities to develop skills and experience such as employment, training and education
• social capital: examples of this include peer support, and family, friends, social networks and opportunities that support recovery
• community capital: examples of this include recovery-supportive community attitudes, services and resources such as non-stigmatising attitudes in the broader community, treatment services and other services and supports

The quality and quantity of recovery capital that a person is able to gain is vital to them promoting and sustaining recovery.

Recovery support at different stages

The intensity, duration and type of recovery support people require at different stages differs between individuals (Best and others, 2019).

The first 90 days after someone leaves treatment are a particularly vulnerable time for people (Darke and others, 2007). John Kelly’s 2017 systematic review on recovery support services in the US (PDF, 1.2MB) found that between half and two-thirds of people receiving treatment will relapse within a year of leaving treatment and relapse risk remains high during the early years of recovery. The earlier someone who relapses returns to treatment, the more likely they are to sustain recovery and the less likely they are to die (Scott and others, 2011).

Research has identified ongoing support including positive connections and engagement with peers as particularly important in early recovery (Best and others, 2017).

Factors influencing recovery

Some important factors that help people to start and sustain recovery are:

• social networks
• peer support groups
• engaging in meaningful activity
• religion and spirituality
• healthy environments and access to community resources

We explain more about each of these below.

Social networks

Social networks that support recovery are seen as particularly important due to the ‘social contagion of hope’ (Best and Lubman, 2012) and the related idea that ‘recovery is contagious’ (Moos and Moos, 2007). Learning from other people in recovery and connecting with them is associated with improved recovery outcomes.

Evidence suggests that adding just one abstinent person to the social network of someone in recovery from alcohol increases by 27% the likelihood that they will be abstinent in a year compared to standard aftercare (see definition of aftercare in the glossary) (Litt and others, 2007). These findings suggest that interventions that grow people’s social networks to support recovery can improve outcomes.

Peer support groups

In peer support groups, people can help each other to sustain their individual recovery and strengthen their sense of purpose and direction. This can happen informally and organically with friends and family members, or formally through projects or services as volunteers or workers (Humphreys, 2004).

Engaging in meaningful activity

When a person increases the amount of meaningful activity they take part in, this has been linked to an increase in their recovery capital and improved wellbeing (Cano and others, 2017). This meaningful activity includes:

• attending groups and social activities
• informally supporting other people
• formal volunteering, including peer support roles
• training and education
• paid employment

Religion and spirituality

Religious faith and spirituality are important to some people’s recovery journeys. This includes people returning to old or adopting new religious or spiritual practices.

Healthy environments and access to community resources

Healthy environments can include a person’s home and other places where they spend their time. Someone in recovery can improve their wellbeing and increase their recovery capital if they:

• are living in a home or neighbourhood where they feel safe
• can avoid coming into contact with problem alcohol or drug use
• have access to a range of community resources that can help their recovery (including outside spaces, community centres and workplaces)

How recovery-oriented systems of care support recovery

Recovery communities are networks of people in recovery, their families and friends, recovery-focused organisations and support groups.

Recovery-oriented system of care

The support offered by treatment services and by recovery support services are both vital to a person’s recovery. The interaction of both services and the local community contributes to the effectiveness of a recovery-oriented system of care (ROSC).

A ROSC is a network of local services and community groups that help people to start and sustain their recovery. It incorporates the insight and work of people with lived and living experience and their families at all levels of planning and delivery to:

• offer choice by providing a flexible and inclusive menu of services, community support and opportunities, including lived experience initiatives, recognising that there are many pathways to recovery
• provide a range of responsive and inclusive support and opportunities for people in recovery and their families
• build on the strengths and resilience of individuals, families, recovery communities and the wider community

The roles of treatment and recovery support services in a ROSC are not entirely distinct or separate, nor do or should they operate solely within the definitions given here. In an effective ROSC, the relationships between treatment and recovery services:

• are strong
• have diverse access (and re-access) points into treatment and recovery support
• have a varied and complementary offer of support

This relationship between treatment and recovery services will often blur the boundaries of operation. For example, there will be times when a treatment worker will carry out significant recovery support work as part of a person’s treatment and recovery care plan and that person has no wish to engage with RSS. Similarly, RSS and lived experience initiatives can play a vital role in providing harm reduction services to vulnerable people who are not accessing treatment. There are pathways to recovery that do not involve treatment services at all.

The distinct and shared roles of specialist services in delivering recovery-oriented care

Figure 1: the distinct and shared roles of treatment services, recovery support services and lived experience initiatives in delivering recovery-oriented care

Figure 1 is a Venn diagram that outlines the roles of treatment services, RSS and LEROs by highlighting the core function of each, and the overlaps between their functions in the provision of recovery-oriented care. It can help you see the distinct and shared functions of each service type and how these services can improve care for people affected by problem alcohol or drug use, by working together. It does not provide an exhaustive list of all the interventions provided by each service type. The 3 circles represent:

• treatment services
• RSS
• LEROs

The diagram provides a simple description of each service type’s core function in delivering recovery-oriented care, as follows:

• treatment services support people to stabilise and reduce their alcohol and drug use and promote recovery
• RSS support people to sustain their recovery
• LEROs support people to promote and sustain their recovery

Each of the overlapping parts of these circles provide a simple description of some of the main interventions that can be delivered by 2 or more of these service types. Where 2 circles intersect, we list the core interventions delivered by both services.

Treatment services and LEROs provide outreach, engagement and harm reduction interventions.

Treatment services and RSS provide continuing care.

LEROs and RSS provide:

• peer-based recovery support services
• recovery community centres
• recovery housing
• recovery support services in educational settings

In the centre where all 3 circles intersect, we list the interventions delivered by all 3 service types. These are:

• re-engagement
• harm reduction
• peer support
• recovery check-ups
• facilitated access to mutual aid
• connections to recovery community
• connections to community resources

The dotted lines around each circle signify that it should be easy for a person to access any of these specialist services at any time, and that the services should work together to support people to access other specialist and non-specialist alcohol and drug services that would benefit them.

How specialist and non-specialist services work together to deliver recovery-oriented care

Figure 2: how specialist alcohol and drug treatment and recovery services and non-specialist services are embedded in the communities they support in an effective ROSC

Figure 2 shows how specialist alcohol and drug treatment and recovery services, and the non-specialist services are embedded in the communities they support in an effective ROSC. This diagram follows on from figure 1. Like figure 1, there are 3 circles that represent treatment services, RSS and LEROs. Around these specialist services, the diagram shows the main non-specialist services that can support treatment and recovery outcomes. These are:

• employment, education, training and volunteering
• housing support
• mental and physical health services including primary care
• criminal justice services
• social care and welfare support services

Dotted lines between the specialist and non-specialist services are used to represent the need for interconnectivity between all services that can play a key role in supporting someone to reduce harm and recover from problem alcohol and drug use.

How the wider community can promote recovery

The final outer layer of figure 2 represents the wider community and the factors in it that can promote and inhibit recovery. These factors are represented here by the 5 steps to mental wellbeing and the 5 ways to wellbeing. These are:

• connect
• be active
• take notice
• keep learning
• give

These 5 actions are used to represent the wide range of services, support and opportunities available to people in a thriving community. For example, this includes opportunities to keep learning through libraries and give back through volunteering.

The blue dotted line in figure 2 shows how both specialist and non-specialist services should be embedded within communities that have many of the factors that enable recovery and that where these are community resources they should be supported to thrive. In an effective ROSC, system partners work together to ensure that there are multiple ways for a person to engage or re-engage with support and improve their health, wellbeing and social functioning.

The role of peer support

How peer support helps

Research shows that peer support is potentially useful at any stage of a treatment and recovery journey (Stack and others, 2022) and that it can help people to:

• reduce harm
• engage in support and start treatment
• sustain recovery

The same research found that peers can offer the people they support a strong sense of personal connection, encouragement, and hope (Stack and others, 2022).

The lived experience of a peer volunteer or worker helps to overcome the power difference that often exists in the relationship between a clinician and the person they are supporting (Collins and others, 2019). Peer support also links people into the recovery community and its recovery-supportive social networks and other kinds of support. It benefits not only individuals but also the recovery community and wider community when people offer peer support to each other.

Where peer support is available

Peer-delivered and peer-led interventions have been described and evaluated in a wide range of settings. This includes in:

• treatment services
• lived experience recovery organisations
• the community
• medical settings, such as hospitals and detoxification units
• perinatal services
• primary care
• homeless settings
• the criminal justice system

Peer support has been used at various stages of the treatment and recovery journey. Treatment data from the National Drug Treatment Monitoring System shows that 19% of people in treatment accessed peer support involvement in 2020 to 2021 in England.

Brief interventions delivered by peers

Brief interventions delivered by peers have been shown to support treatment and recovery outcomes (Bernstein and others, 2005). Research also suggests that a single peer-delivered brief intervention can:

• significantly reduce heroin and cocaine use in people presenting to a hospital walk-in clinic (Bernstein and others, 2005)
• increase the rates of detoxification completion and reduce the rates of discharge against medical advice (Blondell and others, 2008)
• increase attendance at mutual aid groups (Manning and others, 2012)
• significantly increase the likelihood of abstinence at follow up (Manning and others, 2012)

Peer support and treatment

There is evidence that peer support delivered alongside standard treatment can improve outcomes. For example, one randomised controlled trial (RCT) looked at a peer-delivered intervention that was delivered to people with complex needs alongside alcohol and drug treatment. The intervention focused on:

• community connectedness
• problem solving
• life skills
• increasing positive social networks

The RCT found that this type of intervention reduced a person’s alcohol use after a year by more than treatment alone did but did not reduce a person’s drug use by more than treatment alone (Rowe and others, 2007).

Peer support and harm reduction

Some recent peer support research has focused on harm reduction, widening access to opioid substitution treatment and digital innovations. This has been largely driven by the opioid crisis in North America and the need to find effective ways to reduce harm and prevent death. This research has focused on peer support roles that:

• refer people from emergency departments into specialist treatment after a non-fatal overdose and offer continued support and harm reduction interventions like naloxone (Ashford and others, 2019)
• link people into opioid substitution treatment (Gormley and others, 2021)
• engage people at overdose prevention sites (Kennedy and others, 2019)

Peer support benefits the person providing it

Peer support roles not only benefit the person receiving support but also the person providing it (Du Plessis and others, 2019). This is a foundational principle in the 12-step fellowship model, in which people acting as sponsors not only help others with their recovery, but in doing so strengthen their own recovery. The benefits for people in peer support roles can include:

• the good feeling they get from seeing other people benefit from their input
• increased confidence and self-esteem
• increased stability and structure
• increased income, where appropriate
• an opportunity to gain workplace skills
• increased recovery capital for individuals and communities

Challenges for people providing peer support

There are also challenges for people working in peer support roles. These include:

• unclear job descriptions, indistinct role boundaries and limited understanding of peer support roles across teams (Englander and others, 2019)
• becoming integrated into hierarchical structures in the workplace (Englander and others, 2019)
• stigma and discrimination, including devaluing of their lived experience compared to acquired learned experience (Englander and others, 2019; Stack and others, 2022)
• fast-paced work with high demands and the risk of emotional strain and stress (Collins and others, 2019)
• no or poor supervision (Englander and others, 2019; Stack and others, 2022), support including coping with triggers to alcohol and drug use, role support, maintaining boundaries and training (Englander and others, 2019; Greer and others, 2021)
• low pay and the related view that peer support roles require less skill and deliver less benefits than treatment workers do (Gagne and others, 2018; Stack and others, 2022)
• lack of clear career pathways and training and development models (Stack and others, 2022)

The role of lived experience initiatives

About lived experience initiatives

Peer-led communities, services and supports offer people recovery support in the long term. It is hard to imagine an effective recovery-oriented system of care without any peer-led services and supports.

A lived experience recovery organisation (LERO) is an organisation led by people with lived experience of drug and alcohol recovery. LEROs deliver a range of harm reduction interventions, peer support and recovery support services and they can help people to access and engage in treatment and other support services.

These peer-led initiatives often grow from small local projects delivered by an informal group of people in treatment or recovery, into organisations with formal legal structures and staff and volunteer teams. Some LERO leaders believe that more than half of an organisation’s staff and volunteer teams, especially leadership roles, need to have lived experience for it to be defined as a LERO.

We are aware of 33 LEROs in England working in at least 40 local authorities.

Peer-led initiatives: what they are

The lived experience leaders who co-developed this guidance describe peer-led initiatives as having the following features.

Led by and for people with lived experience

LEROs are independent organisations led by people with lived experience of drug and alcohol recovery, for the benefit of the recovery community.

Independent and autonomous

Since peer-led initiatives are likely to have multiple funding streams including contracts, grants and donations, they have more autonomy than other service providers. Their independence and autonomy are vital to their ability to respond, evolve and advocate effectively.

Take an asset-based community development approach

Peer-led initiatives are set up with little or no funding by people who have accessed (or, in some cases, have struggled to access) treatment and support. This means they are built on local assets and developed in response to community needs, by the community (see definition of asset-based community development in the glossary).

Offer a culture of recovery

Peer-led initiatives help people to develop a new identity, social network and life, offering an alternative to problem alcohol and drug use.

Agile and innovative

Lived experience leaders are committed to creating change and responding quickly to it. This was particularly evident during the COVID-19 pandemic when LEROs and mutual aid groups continued to support people by rapidly replacing in-person contact with remote alternatives. This included reaching into prisons and providing continuing care for people after release (Best and others, 2022).

Entrepreneurial

Peer-led initiatives are often started without any formal funding and led by an individual or small group, so are necessarily resourceful and entrepreneurial. This means that they are skilled at identifying and tapping into community resources, including:

• connecting people
• securing in-kind support
• setting up social enterprises

Person-centred

Rather than focusing on alcohol and drug use or treatment outcomes, peer-led initiatives focus on supporting personal growth. This includes:

• recognising the needs of people with lived and living experience
• delivering support
• actively checking in on their recovery

Respect different pathways to recovery

Since peer-led initiatives are made up of people who have followed different routes into recovery, they recognise and respect each person’s journey.

Complementary to treatment

As community-based projects with active volunteer teams, peer-led initiatives can be well-placed to support people, especially during transitions back into community settings from prison or residential treatment. Delivery models differ widely, but peer-led initiatives generally provide support that complements the treatment journey and ‘bookends’ it by providing support before and after treatment. They offer entry points through outreach and in-reach (for example, to people who are rough sleeping, leaving prison or in hospital), and by providing in-treatment support and recovery support.

Accessible and flexible

Peer-led initiatives offer out-of-hours support in the evenings and at weekends when treatment services are normally closed. This out-of-hours support can include in-person and remote one-to-one or group sessions, and helplines. Most peer-led initiatives provide outreach and in-reach to people at the point of need. Some more established LEROs have a physical base from where they offer support.

Experts by experience

Peer volunteers and staff bring expertise from their own lived experience. This means that they are well-placed to understand, connect with and help people to sustain recovery.

Diverse and inclusive

As they typically grow in response to local needs, peer-led initiatives tend to be diverse and inclusive organisations with reach into the local community. Their asset-based approach means that LEROs often work in partnership with local community organisations and groups such as faith, women’s and ethnic minority groups. This partnership work can open up pathways between communities and LEROs.

Reducing stigma

Peer-led initiatives model recovery in the community, helping to reduce stigma by showing that recovery from problem alcohol and drug use is possible.

Advocates for people and communities

Peer-led initiatives use their extensive networks to get a deep understanding of the problems associated with alcohol and drug use and people’s experiences of treatment and recovery. This means they can speak and advocate for recovery communities.

Involving and supporting families

Peer-led services recognise the importance and power that close relationships, like family and friends, have on recovery. They directly support and involve families and friends in the recovery community. This also supports people to recover.

Skilled in maximising available resource

Due to the way that peer-led initiatives are established, their infrastructure and their peer-led nature, they can offer support within systems of care by connecting and strengthening available resources. For example, peer-led initiatives often develop relationships with local businesses that want to support local community members and groups. This can include leisure centres providing free day passes or supermarkets providing donations of stock.

Lived experience recovery organisations: principles, processes and networks

While LERO models differ, the principles underpinning these peer-led initiatives are shared. The growth of LEROs and recovery communities in the UK has seen cross-sector networks forming. These networks and organisations have identified the shared principles underpinning LEROs.

FAVOR UK: principles of recovery community organisations

Faces and Voices of Recovery UK (FAVOR UK) is a national charity made up of people in recovery, their friends, families and recovery community organisations (RCOs). RCOs is an alternative term for a LERO. FAVOR UK builds on the work of the Faces and Voices of Recovery (FAVOR) which developed the Alliance for Recovery Centered Organizations (ARCO) in the US.

FAVOR UK runs an ARCO with a network of RCO members in the UK and has developed a toolkit to support people setting up RCOs. The UK ARCO identifies the core principles of an RCO as follows.

• recovery vision: RCOs enhance the support for people seeking recovery and those in long-term recovery, recognising that there are many pathways to recovery
• authenticity of voice: this means that RCOs exist to represent the recovery community. This includes actively involving all members of the recovery community
• accountability to the recovery community: RCOs are usually independent, not-for-profit organisations working with treatment providers and other organisations, but retaining independent governance structures

RCOs also offer opportunities for recovery community members to give back through volunteering and paid work that helps others to sustain recovery. FAVOR UK has described RCOs as using 3 main strategies in line with their core principles. These are:

• undertaking public education and awareness
• advocating for policy change
• delivering peer-based and other recovery support services and activities

CLERO: network and map

The College of Lived Experience Recovery Organisations (CLERO) was started in 2020 by a group of lived experience leaders and supports a network of LERO members from across the UK. The CLERO website says it aims to ‘build coherence, trust, credibility and consensus for recovery groups and communities based on a model that promotes an evidence-based approach predicated on lived experience’.

CLERO is currently developing standards for LEROs aligned with the CHIME framework of mental health recovery (Leamy and others, 2019). This framework identifies 5 recovery processes making up the word CHIME:

• connectedness
• hope and optimism about the future
• identity
• meaning in life
• empowerment

These standards will help lived experience initiatives and system partners to identify what stage of development they are at and how they want to develop further. CLERO has developed a map of LERO provision in the UK and Ireland.

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