'We can’t help everyone, but everyone can help someone. '

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Building a peer recovery research workforce, May 2021

Dot Smith, Natalie Manly, Nicola Middlehurst, Joan Love, Tim Norval, Linda Chan, Mark Eltringham, Ben Houghton, Finola Sullivan, Raman Nijwahan

The College of Lived Experience Recovery Organisations (CLERO) has emerged in the course of the last year as a powerful force for building an evidence base for recovery community organisation and for generating a positive radius of trust and hope. This will grow into a set of quality standards and a network of recovery organisations committed to evidencing what they do and championing innovation that is embedded in a set of clearly articulated values including transparency, openness and trust.

The CLERO has been boosted by support and engagement from Dame Carol Black who is looking to the group for guidance around the role of recovery and organisations and by a small grant from the Big Lottery to develop our work. One of the key aspects of this is the support and training of a group of lived experience peers in the principles of research. This is not an abstracted academic course but training and development geared towards the first engagement phase of work done with LEROs across the UK.

What is the training for?

There is both a short-term and long-term purpose. The short-term purpose is to build a peer research workforce who can undertake two pieces of work for the CLERO;

1. An audit of research, evaluation and innovation in LEROs across the UK;
2. To undertake initial fieldwork about what LEROs currently do around quality standards and to identify innovation and good practice in this area;

The intention of this piece of work is to build a cohesive group of peer researchers who can complement each others’ skills and talents and who can build their individual and collective research knowledge working with LEROs across the country.

The longer-term objective is about creating a group who are capable of building an evidence base within their own LEROs and helping to build a research culture across the LEROs of the UK. The hope is that a range of services will have people with both enthusiasm and interest and the CLERO will provide oversight and support as they want and need it.

So what was the training and who was invited?

The initial version of the training materials had been developed by David Best for use in a peer research project with Staywell Derby and were extended and amended for the current purposes. The aim was to provide four days of training and support starting with some basic theory and conceptual foundations and becoming increasingly practical so that the second block of two days will focus almost exclusively on developing a design and methods for the audit of innovation.

A two-day residential training (with the option of online attendance) was hosted at The Well in Barrow-in-Furness, with a total of 31 delegates from across the original group of five LEROs in the College of Lived Experience Recovery Organisations. Seven people attended in person and a further 24 online.

There were both challenges with the IT (particularly for those participating on Zoom) and with the theory-heavy content on the first day, but all two participants signed up for the next two-day block and the evaluation of the event (designed by the participants) was generally positive about the course. Crucially, several participants who had no previous research knowledge or experience (many of whom had no higher education) reported their delight at how much they had learned and had enjoyed the experience. A genuine sense of togetherness and mutual support also emerged over the course of the training.

So what have we learned?

It will surprise no-one that the participants were an incredibly diverse group with all kinds of knowledge and experience so it is always going to be difficult to pitch this kind of training. The key is to focus on practical tasks that create a learning experience and that help the groups bind together. There are also challenges of having part of the group in person and part down the line, but there was still an emerging sense of group identity that we will hope to build on.

But the most important lesson is that this is a dynamic, creative and energetic group of people who bring trust and energy to the task and a willingness to share and learn that will ensure the project is successful. We have built a solid foundation for generating a peer recovery research workforce that will grow and learn. The remainder of this blog is given over to participant feedback and next steps

One of the contributors reflected that “As a LERO leader I am all too aware evidencing our impact is often shoved to the bottom of the pile, we are great storytellers but anything more formal is confined to grant and contract performance frameworks. I have progressed in my career through vocational routes, I am at University for the first time aged 54 so research theory and practice is all new to me. The first day really challenged me, the experience within the group was varied but the support and encouragement collectively was really powerful. Just as we would expect from a group of LERO's no matter where in the UK they are from!”

This sense of common purpose was also identified by another participant who added that “we are delighted to be involved in this training and the huge difference we hope to make in evidencing the amazing work LEROs are doing up and down the country.  This training is the first step towards that work, which will only strengthen the growth of the visible recovery movement further”.

The broadening of our vision from exclusively of people in recovery to a wider group of lived experience was reflected in the view that “As a family member of the recovery community and working in a LERO, I want to develop the skills to document the successes and accomplishments I see every day. It is a privilege to be part of such innovation alongside those who can provide such a multitude of perspectives and bring a truly diverse skill set along with them. It is exciting to see what we can achieve together in highlighting the necessity of recovery community organisations and to create confidence and challenge stigma by contributing to an evidence base of the benefits that LERO's provide to individuals, families, local communities and wider society”.

So where do we go from here? We have a second two-day course planned and we will run future cohorts of this course. The aim is to create an evidence-base but also a culture of commitment and capacity to show that recovery is a positive contagion that changes individuals, families and communities repeatedly, consistently and visibly.

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Challenging Stigma

In 2010 the United Kingdom Drug Policy Commission published a report on the stigmatisation of drugs users, and finished the report by stating, ‘if society is serious about supporting recovery from drug problems it has to get serious about challenging stigma’. It does not feel as if we have got far, does it?

It seems as if there has never been a concerted attempt to challenge the way wider society views people with substance use disorders, and as Mother Theresa predicted, we have become the lepers of the twenty-first century, shunned, excluded and unwanted.

A quick scan back over the past decade offers us hope that a united front built around a worthy moral cause can force a gradual systemic change. At last, individuals with mental health disorders are viewed as more than ‘the nutter on the bus.’ Black Lives Matter and the MeToo movements have shown us that a mirror can be held up to wider society, demanding that they do better and recognise the essential truth in the adage ‘do unto to others as you would have them do unto you.’

‘Working With Everyone’ were recently commissioned by the NHS APA to hold a series of workshops looking at the lived experience of stigma among people who use drugs. Stories of the way in which the participants were treated by the wider health system, including G.P.’s, mental health services and hospitals, were depressingly familiar in their negativity and in several instances genuinely shocking, and makes a nonsense of the idea of integrated care systems. How can there be an integrated care system in England if a large part of that system regards us either as not their problem, or unworthy of support?

It is time the sector united around the persistent and endemic stigmatisation of those who struggle with their substance use and took the battle into society, the press, and the corridors of power. We need to remind them that we are mothers and fathers, sons, and daughters, and that we are as deserving of our place in the sun as they.

LERO’s can and must play a central part in this. After all there is not one of us who has not been on the receiving end of stigmatisation repeatedly. It is time we joined hands with the rest of the sector, and held up the mirror, stating ‘enough really is enough.’