Last week, the highlight of my week was not presenting at a conference or completing my part of a hard-worked funding bid, though both of these were satisfying. By far the loveliest thing to happen was a short conversation with an ex-patient who came back to say thank you. She particularly stressed the part that lived experience and having been a peer supporter had played in consolidating her own recovery. I was moved by her gratitude and by what she said.
In Scotland our drug and alcohol policy, Rights, Respect and Recovery, emphasises the important role that lived experience needs to play in helping those with substance use disorders achieve their goals. They and their families are: to be heard (p4), to be involved as key partners (p7), to be realised as key resources (p15), to be seen as experts (p17); to be involved in service design, development and delivery (p31) and must be ‘at the heart’ of a whole family and family-inclusive approach (p41).
Scotland is praised in its approach in a recent blog by UK academic, Professor David Best and American economist, Sonia Martin. Writing at Rec-Path, they evaluate recovery in policy and practice on both sides of the Atlantic. While there are things to celebrate, the ‘disconnect between policy and practice’ concerns them.
Themes I recurrently return to, and which are picked up in their piece, include the tension between public health priorities and what individuals and their families want from treatment, the polarisation of the harm reduction/recovery debate and professional vs. peer roles in supporting recovery pathways.
In their qualitative study of ten peer supporter workers from Ayrshire in the west of Scotland, ‘It’s not 9-5 Recovery’, Martin Anderson and his colleagues found that 8 participants held some negative views around ‘overly medicalised solutions’, whereas belonging to Recovery Ayr played a central role in their recovery, providing meaning and purpose. Peer support allowed integration ‘into a support network not just limited to meetings and appointments’, but peer supporting itself was identified, as it was by my ex-patient, as providing a ‘purposeful social role’ and creating a ‘foundation for recovery’. Small numbers perhaps, but it chimes.
The one thing, arguably not much on the radar, that is highly likely to make a difference to outcomes and reduce harms is this powerful effect of connection to peers, something that should be part of recovery-oriented systems of care. This is not to say that professional interventions are not fundamental to many recovery journeys; it’s just that for many they are a relatively small part of a much bigger picture. I believe that we tend to over-value the role of medical interventions and I say that as a doctor who is passionate about good medical care.
It is notable that almost no funding has been allocated to researching recovery-oriented systems of care in the US or UK in the last decade.
Martin & Best, 2021
We don’t know how good we are at actively connecting our service-users to mutual aid and lived experience recovery organisations (LEROs). We have no monitoring framework in place for this – probably because it’s of little interest or perceived relevance to many in the field. The lack of recovery-oriented research is also something that’s frustrated many of us who’d like to see more of a balance. As Anne Marie Ward, the CEO of FAVOR UK, said at the recent meeting of the All Party Parliamentary Group on recovery ‘we don’t need any more addiction research, we have plenty of that, we need to study what gets us well.’
The group that I chair for the Scottish Government on Residential Rehabilitation recommended that researchers look at this issue recovery outcomes (from residential rehab) specifically. The bottom line is that if the bulk of research in the future continues to be focused on medical interventions then we get the Catch 22 of the oft heard phrase ‘there’s no evidence’ for anything else. Our failure to construct and deliver Recovery Oriented Systems of Care (something that has been called for by one name or another for two decades and something that is much wider than medically-led interventions) is a source of shame for us.
Although there are distinct differences across the pond (notably the way healthcare is paid for through insurance), Best and Martin highlight what they see as the common issues
- The domination of policy and practice by clinical ‘experts’
- The ‘haunting’ issue of harm reduction vs. recovery and the swinging policy pendulum
- Lack of visibility and accountability from policy-setters
- Hegemonic influences of disciplinary backgrounds
- The continuing shadow of the pharmaceutical industry
The emphasis on personal and experiential rather than clinical recovery – and on experiential rather than professional expertise – is where the gulf is most apparent between those with lived experience and medical or policy experts.
Martin & Best, 2021
This is not universal, indeed I am endlessly in awe of colleagues who work in the treatment field whose practice is compassionate, industrious and value-driven, but where they do exist, the attitudes behind this gulf are rarely explicit (though they most certainly can be, with one expert in Scotland describing the potential impact of lived experience in Trumpian style as ‘fake news’). Instead, I hear them in softer ways on a regular basis. I see all such references as subtle stigma.
Martin and Best conclude:
“The shared concern in both the US and the UK is that increased investment and increased public concern and attention have not led to new ways of thinking but have largely ended up in doing more of the same. More treatment workers, more treatment services and very little of the crucial lessons from recovery – jobs, houses and pathways to community capital and resources. In Scotland, McGarvey (2018) has referred to this as the self-preservation of the ‘poverty industry’.”
This is a difficult message to hear. Most of us are doing our best in the face of relentless demand, apparently intractable problems, limited resources and high degrees of risk. The danger is we react defensively. I don’t see these themes as personal attacks or threats to our autonomy, but as calls to to things differently. There must be a middle way here where experts by lived experience and experts by training can all sit round the table as equals. More and more of us now have both qualifications, which can bring its own challenges, but distinct advantages too. With the right approach we can be bridges.
The power of lived experience to introduce hope, establish powerful role-modelling and support others in early recovery is phenomenal. It is patently not ‘fake news’. Think of my grateful patient – she helped herself and others by using her lived experience. She helped our service. She helped me.. The power of lived experience to shape and help deliver policy and services has the same potential, but although you will find it written on page after page of policy and guidance we’ve not yet tested it in a meaningful way.
For professionals and those with lived experience to sit equally around the same table, the table must be big enough, the invitations sent, the door open, the chairs comfortable, and everybody must have a chance to have a say. Crucially, those with lived experience need to be heard in a meaningful way. That is, in a way that can influence policy for the better and help translate it into action.
Continue the discussion on Twitter: @docDavidM
Photo credit: Istockphoto Andrew Johnson. Under license.
 Martin Anderson, Alison M. Devlin, Lucy Pickering, Mark McCann & Daniel Wight (2021) ‘It’s not 9 to 5 recovery’: the role of a recovery community in producing social bonds that support recovery, Drugs: Education, Prevention and Policy, DOI: 10.1080/09687637.2021.1933911
 McGarvey (2018) The poverty safari: Understanding the Anger of Britain’s underclass. London: Luath Press Limited