Introduction (Bill White)
The international recovery advocacy (and peer recovery support) movement is marked by the proliferation of grassroots recovery community organizations that are distinct from traditional addiction treatment organizations and recovery mutual aid societies. As these new organizations emerge across geographical and cultural contexts, one of the critical needs is the creation of a networking process through which such organizations can share their experiences, forge a common vision and shared goals, and exchange new technologies of recovery advocacy and recovery support.
The following brief report from David Best and colleagues offers a quite promising update on such an effort in the UK. I have closely followed the progress of the UK recovery advocacy movement since my visits there in the 2000s. I find these current efforts quite inspiring and suggest their emulation by other countries.
Connecting the connectors: Creating space to develop evidence-based innovation in Lived Experience Recovery Organisations
By David Best, Ed Day, Stuart Green, Dave Higham, Michaela Jones, Tim Leighton, Tim Sampey, Jardine Simpson, Dot Smith, & Stephen Youdell
The UK now possesses a rich and diverse range of Lived Experience Recovery Organisations (LEROs) whose models and methods are driven by mutual support, community engagement and enhancement and a commitment to individual, group and local community wellbeing. This is often driven by a person of lived experience (POLE) who is often championing a gap between specialist treatment on the one hand and the mutual aid fellowships on the other, in order to meet local needs.
Yet the problem for LEROs is one of fragmentation. There are no professional or membership bodies in the UK or in most other countries, no governance or inspection frameworks and not even any annual events or forums that would allow for the sharing and exchange of good practice of innovation. Partly for these reasons, LEROs remain marginalised in the funding and planning of addiction services and systems, and this marginalisation helps to perpetuate our ‘orphan’ status, and are often perceived by treatment organisations and commissioners as bedevilled by in-fighting and lacking in consistent standards.
Early in 2020, in response to the pandemic and the changing face of recovery support services in the UK as elsewhere in the world, a group of recovery leaders and advocates came together with four primary objectives:
1: To identify and champion innovation in LEROs and provide a supporting evidence base
2: To provide connections and support for recovery leadership
3: To champion good practice in LEROs and to develop standards
4: To act as a voice for LEROs and a hub of evidence and knowledge
The catalyst for convening the group was around the emergence of some incredible innovative and flexible practices around both online transitions following lockdown (in response to the COVID crisis) and some continuing and evolving community work to support clients, their families and the broader communities deal with the hardships that the pandemic had generated.
So what does the group do?
The initial aim for the group was to test shared ideas and shared vision but above all to generate a radius of trust where participants felt confident that they would be heard and respected, and where they could be open and honest without concerns about confidentiality and integrity. Much of the first few discussions (which are held weekly by Zoom) were around what we mean by recovery and recovery-oriented approaches leading to agreement that the appropriate language of inclusion was to focus on Lived Experience Recovery Organisations, where Lived Experience referred to marginalisation and adversity rather than necessitating substance use or misuse. The aim here was to promote inclusivity and compassion.
The initial group membership was opportunistic, based on shared working experiences, yet a number of participants did not know each other, and one of the key successes in the early stages has been that there have been no drop-outs and no additions – in other words, the group has been able to develop its own identity and norms.
With that shared vision and understanding in place, the group is now moving to a process of external engagement and will work towards using these solid foundations to build validity in its communication and thoughts with the wider treatment and recovery landscape.
We are now starting a weekly peer supervision component where the final 30 minutes of the session are to be dedicated to addressing key challenges faced by one of the recovery group leaders. The first one of these addressed the question of maintaining personal recovery values while competing in a professional arena that is often inimical to those values. This process has created strong bonds of commitment and empathy within the group.
While we are still very much in our infancy, there is a clear need for members to explore how to deal with complex issues of leadership and management in organisations that have strong ethical and inclusive principles and values. We are still learning and continue to strive to find the most empathic, humane and empowering ways to deal with people with lived experience.
Defining a LERO: principles, values and standards
Our initial definition of a LERO is: “an organisation of lived experience committed to recovery with a focus on autonomy” while we are deliberately being broad and inclusive in our consideration of lived experience as “Lived experience is defined as personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people“.
From this starting point our aim is to promote principles and values of:
Through these principles our aim is to promote and champion the emerging evidence base for recovery-oriented practice and to ensure that this is effectively and consistently implemented and embedded against a set of standards for LEROs to sign up to. Performance against these standards will be rigorously assessed by those with lived experience.
During the COVID crisis in the UK, there is a general recognition that LEROs and other community organisations have generally been adaptable and effective in responding to threatening and rapidly changing environments. Our aim is to champion this kind of adaptability based on the needs of people in recovery, their families and (crucially) the wider communities. It is often difficult to quantify some of these benefits to service commissioners (whose models are typically designed to address deficits) but they are critical in understanding why LEROs should not be considered as treatment providers nor judged against treatment standards. Our aim is not to be an ‘add on’ to treatment but an equally valued, evidenced and significant component of a balanced recovery-oriented system of care with different (but just as rigorous) standards and values.