Power to the people — From ‘Service User’ to ‘Expert by Experience’
‘The term ‘co-production’ describes working in partnership by sharing power between people who draw on care and support, carers, families and citizens.’ (SCIE) — ‘sharing power’ is a term we often hear, but what does this actually look like in practice? And what are the challenges of sharing power in a health system and wider society rife with power imbalance? Central to community organising is an understanding of power, and we cannot co-produce without similar understandings of how power structures shape people’s lived experience of accessing services. This blog explores the theme of power in co-production, and what it takes to go from ‘service user’ to ‘expert by experience’.
When working with people with lived experience of accessing health and care services, we need to understand the imbalance of power they have often experienced as ‘service users’. This is not a term I use myself, as it describes a power dynamic in which one party, the service provider, holds the power and offers services down to a passive recipient. In this ‘service user — service provider’ dynamic, the person accessing care is described as solely a user, not someone who brings their own valuable experience. Many of the Experts by Experience that Grapevine work with have spent years made powerless by health and social care systems that don’t value their voice, with decisions about their health and care being made by professionals in positions of greater power than them. Imagine then, the transition away from being solely a ‘service user’, to an ‘Expert by Experience’. Someone who has knowledge and experience to bring to the table and shape services. Someone who is paid to use their experience for good, and to make necessary change. But for good co-production to take place, it is not enough to simply name someone an Expert by Experience and give them a seat at the table. We need to understand how power structures shape people’s lived experience of accessing services, and change these from the core so that Experts by Experience and Experts by Training (someone who is an expert due to their learnt or professional experience) can truly share power and co-produce together.
I spoke to my colleague and community organising legend Gemma Musgreaves about her thoughts on power, community organising, and co-production:
In community organising, the definition of power that we are concerned with is ‘the ability to act’.
In definition, people’s involvement in any kind of consultation or co-production must be recognised as important and have the potential to influence the outcome of such spaces. As an organisation that has agitating for change as a core mission, Grapevine is used to challenging traditional power structures. We have always worked to persuade decision makers to listen to the people they are serving.
As we develop our community organising practice, we think more about supporting people to build their own collective power so they cannot be ignored. We move away from persuasion towards demonstrating people-power to challenge existing power structures. Traditional power is interlinked with money — funders always have a seat at the table (whether they are there or not). Our purpose within organising is to make the collective voice impossible to ignore, even if you don’t particularly like what it is saying.
Gemma’s words on power really speak to what makes good co-production possible. When we build people power by investing in people with lived experience, that is when change can happen. For ‘the ability to act’ to become possible, co-producing structures must be in place that enable power sharing. Bad co-production mirrors the unequal power imbalances people have experienced while receiving treatment. It sees Experts by Experience as an afterthought, just a tokenistic addition to a meeting rather than an essential part. A few examples of what this can look like in practice are:
- Agendas weighted in favour of professionals, with little time given to EBEs
- Pushing EbEs off the agenda to make space for other, ‘more important’ topics
- EbEs being asked to join a project last minute to sign off on decisions that have already been made without their involvement
- Meeting structures and documents full of jargon and inaccessible language
A lot must be done to change power structures, and genuinely begin to share power in co-production. Grapevine’s approach to co-production prioritises putting autistic people, people with a learning disability, and people with ill mental health in positions of power. We recruit EbEs into co-chair positions of boards so they have the power to control how that board runs and can set the agenda. But it isn’t as simple as just recruiting an autistic person as co-chair of a meeting. For power to truly be shared, structures need to adapt to be truly inclusive, and professionals need to change their practice and share their power.
In my next blog I will explore some of the community organising tools that we have adapted for use in our work, enabling strong co-production where power is shared.
