By Amy Wells, NSUN’s Senior Communications & Membership Manager
There has been a decades-long movement to increase what gets called lived experience, service user, or patient involvement in the design and delivery of mental health services, programmes, projects, and research. There are now many groups and activists working in a range of ways and contexts to bring much-needed lived experience perspectives to spaces dominated by those positioned as “professionals”. A big pull, I think, for those who want to “do” involvement and co-production, is the hope that things may change for the better for other people who experience mental ill-health, distress and trauma.
The involvement landscape is shifting. Things like “lived experience advisory panels” and job roles that encourage or ask for lived experience are cropping up with increasing frequency across a range of healthcare – and charity – contexts. But the reality is that senior, adequately-paid lived experience roles are still rare, and most attempts at lived experience involvement in services look nothing like the resourcing of well-paid job opportunities.
As a consequence of the involvement and co-production agenda – or arguably, as a consequence of the co-option of it – it seems that things are stalling. The model for involving people with lived experience in work on mental health services (and beyond) seems to go only as far as offering a select few “a seat at the table”, whether that’s through inviting us to a meeting or a focus group, having us on an advisory panel, or offering us jobs.
How does this stand in the way of our imagining of what things could look like if we thought beyond the current construct and state of co-production, where lived experience voices are typically involved as add-ons?
Co-production and involvement opportunities, when they happen, are not always genuine and meaningful opportunities to shape something like a service or a new project, because they very often do not involve genuine power sharing. They can revolve around tokenistically bringing people in at a point where there’s already a pretty solid idea from service leaders about what they want to do, and seem ultimately to be looking for a stamp of approval from involvement, or to be able to say: “this was co-produced!”.
Involvement opportunities are often in reality just consultation exercises. We might give feedback, and it might be taken into account to some extent, but we most likely aren’t brought in right at the start of an idea, and given an equal share of the resources and responsibility we need to shape things from the beginning. Instead, we’re being offered opportunities to neatly slot into already-decided structures and hierarchies and often in roles where we’re still not expected (or wanted) to do much other than to “share our stories” in ways that are sanitised and palatable.
As things stand, we are still underpaid, undervalued, and in most contexts, we aren’t setting the agenda.
It is work that can become unsafe, extractive, exploitative, and exhausting, with a deep personal toll. For those familiar with working within institutions, it is not surprising to hear talk of the painfully slow pace of the work; the chipping away for years at a speed that does not reflect the urgency of the need for change.
It can also be work that excludes people who are not known and trusted to bring a relatively uncritical voice. The setup of these spaces within services – their compositions and cultures – also mean that people who do manage to get a seat at the table may be fearful of being too critical (or: too “angry”, too “emotional”, too “unprofessional”). A “user” of a service involved in co-production processes of that very service – one that they may rely upon – faces the very real fear of exclusion from that service based on what they say in these co-production spaces or meetings, where one or a couple of lived experience voices are still greatly outnumbered by “professional” voices. In these spaces, bringing a critical perspective might be met with defensiveness, dismissal, or disapproval, because within services there is still much resistance to acknowledging their capacity to cause pain and harm.
This resistance, combined with the slowness and inflexibility of institutions and statutory services, makes me doubt that co-production and involvement as it stands is the thing that is going to bring about systemic change and take us closer to liberation, freedom of choice, and transformative justice.
I’m not sure I believe that the system can ever truly provide us with alternatives to itself.
Instead of invitations to the table, I’d like to see more of “our own tables”. I’d like us to think beyond inserting lived experience into already-existing structures and spaces which can remain hostile, and where people can face a fight for credibility, the devaluing of their lived experiences, and the pressure to serve someone else’s agenda in dangerous territories and cultures.
What I’d most like to see, rather than simply sharing ownership or power, is mental health services, organisations, policy-makers and commissioners completely parting with power; giving resources and agency to groups of people with lived experience to create their own solutions and move beyond tinkering with the status quo. That could look like people and institutions with money and power giving that over in full to people with lived experience and user-led community groups who are working independently in ways that centre care, choice, dignity, social justice, and freedom from oppression and marginalisation.
Co-production as it is needs to be real and authentic. It must involve the true sharing of power, and it also has to be able to be critical of itself, making space for conversations about the power imbalances that exist within co-production spaces even when power is “shared”. But if we think and aim beyond professionalised co-production, beyond lived experience involvement only as a part of bureaucracy, perhaps we could better work towards the flourishing of communities who are doing things for themselves, by and for and with their own people, providing alternatives and choice far beyond what’s currently on offer or seen as possible.