Since December 2015, I’ve been working with a small group of innovators in the UK to explore whether the importance of community agency resonates with practitioners in the field.
We met at a meeting funded by Guy’s and St Thomas’ Charity as part of some work to explore the evidence linking agency and well-being (the summary of that work was published as an appendix to our March 2017 report, Fostering Agency to Improve Health – see page 37 of the PDF). We stayed in touch through 2016, partly to share more about our work and partly to see if we might do something together.
Late last year, we agreed to ‘do something’. We wanted to understand whether others shared our view, and, if so, how we might go about advancing it beyond our small group. To do that, we needed to agree what our view was, and so, at the end of 2016, we drafted a one-pager.
When we drafted it, we thought it was a manifesto. But we quickly decided we disliked that term because it suggested a level of certainty and self-importance that we were uncomfortable with. In the end, we called it an ‘invitation’ – because we were inviting people into a discussion.
The invitation was also in the aforementioned report (see page 107 of the PDF) but we wanted to share it through a post so that more people got to see it. This is especially true for readers in the US who often think the ideal answer to their health challenges is to mimic European-style health care systems. I’m sure there is some good to be had but it’s not the whole answer.
We think there needs to be a radical change in how we approach health. The good news is that it’s already happening but in small, often poorly supported, pockets. The challenge is to bring it from the fringes into the mainstream.
Our current approach has three pillars: labels, provision and power. People are labelled with diagnoses and have services provided to them, all through the power of the health system. But labels fail to grasp why someone is ill. The services we provide fail to address the root causes.
The truth is that today’s systems cannot fully understand root causes. They can label them, for instance by correlating life circumstances to disease rates (the circumstances being called the ‘social determinants of health’), but that’s not the same as understanding them.
To understand someone’s health you have to include him or her in the process of making sense of the root causes. And you have to listen. Genuinely listen.
The radical change that we think is needed is for people and communities to be heard. We don’t believe it’s happening. For all the talk of ‘co-production’ and ‘putting people at the heart of services’, we’re convinced that little of it goes far enough.
When people and communities are genuinely listened to the health system will have relinquished some of its power. It won’t set priorities; it’ll agree them with communities. It won’t provide solutions; it will derive and implement them with communities. And it won’t decide whether something ‘worked’; it’ll work with communities to understand what is valued, and by whom.
The innovators in the fringes are prototyping this approach. They’re acknowledging and addressing the imbalance of resources and power that exists between systems and communities. They’re striving for parity, modelling mutual learning. And they’re getting to the root causes.
We’re a group of practitioners frustrated by the response to our failing health system. We’re angered by how the true innovators at the fringes struggle for resources and recognition. We want to bring their approach into the mainstream. And we want to create an environment of learning through doing.
Our nation cannot wait. We believe one reason why communities have not risen up against the health system is because those most poorly served are those that have become used to being ignored. Rather than wait for the dissatisfaction to turn into anger we must act now.
Health cannot be owned by the health care system. Health happens through the many interactions in society; within communities, between communities, with systems, and between systems. No single entity can set the agenda. All must be brought to the table, and with an equal voice.
The radical change we seek is to listen to, and respect, our communities. We believe this is the only way to improve people’s health and save our failing health system. We’d love to talk. We want to share – and test – our experience with others and, if it makes sense, work towards a gathering to take this discussion forwards.
Who We’re Inviting
Over the last four months, we’ve engaged with about 45 practitioners and funders to test our thinking and understand who might want to join us in a shared endeavour.
We don’t yet know what the endeavour is but we’re thinking it’ll be a gathering of some kind. We don’t want to gather for the sake of gathering, though, so we want to understand what kind of gathering makes sense to bring the views expressed in the invitation into, if not the mainstream, at least sharper focus. Right now, we’re thinking it’ll revolve around the idea of an environment for continuous learning as part of fostering a community of practice.
We’ll have completed this phase of work by the end of September. Whether we continue depends on whether we have a clear sense of what to do next and whether we can resource the effort (the current work is being resourced by Bridging Health & Community, Guy’s and St Thomas’ Charity, and Lankelly Chase).
By the way, we hand-picked the 45 on the basis of what we know of their work, their world view, and our belief that they’re likely to give us informed and honest feedback.
Who We Are
Finally, note that the folks working on this with me are:
- Elizabeth Slade, formerly Chief Operating Officer, Sunday Assembly, and now an Independent Consultant
- Gail Findlay, Director of Health Improvement, University of East London
- James Murray, formerly Head of Development, Guy’s and St Thomas’ Charity, and now an Independent Consultant
- Jess Cordingly, Director of Social Innovation, Lankelly Chase
- Jonathan Stead, Director, C2 Connecting Communities
- Mike Wilson, Director of Projects & Strategy, Pembroke House
- Nick Gardham, CEO, The Company of Community Organisers
My thanks to them for their tireless dedication to this work. I’ll be writing more – and more regularly – about the work in the UK as it unfolds. If you’d like to get involved, please do get in touch.