In the first half of 2022, the NSUN team took some time to reflect on how we work, why we do the work we do, and the spaces we work in.
As we grow, we want to think about our place in a rapidly shifting landscape. Lived experience appears to be climbing to the top of many agendas, but user-led organisations like NSUN remain outliers.
In policy settings, lived experience is often tokenised or co-opted, othered, and not truly heard. The complexities of marginalised identities and communities are often erased. We wanted to reflect on our role within the mental health ecosystem, and think about who we are serving by attempting to formulate policy within current structures and silos. We also wanted time and space to think about the personal cost of doing this work.
At the same time, we wanted to reflect on our role as an infrastructure organisation for grassroots community groups. Many don’t explicitly describe themselves as user-led, or as being primarily mental health-focussed. Most understand mental health intersectionally. None see their work as an add-on to statutory services. Their centre of gravity is their own self-defined community and that community’s specific needs.
Traditional funding and capacity-building structures currently keep these groups precarious, excluding them from funding streams due to capacity, funding, or evidence requirements. We want to meet groups where they are at. We want to honour their mission and make the case for the often-invisible labour of grassroots groups to be valued, understood, and funded.
Throughout our reflective process, we formulated a Theory of Change that clarified our priorities and long term goals. We want to share some of the key points that emerged from this. In the coming weeks, we will share more of our thinking through written pieces by staff on our specific areas of work, to be published on the News page of our website..
Themes of work
- Knowledge: we want to build, amplify and distribute the knowledge that is held by people with lived experience of mental ill-health, distress and trauma
- Collaboration: we want to create collaborative spaces with members and partners through coalitions and networks to build momentum and sustainability for the work. We hope to build nurturing conditions within mental health work that prioritise care
- Voice: we want to build an alternative approach to mental health policy work, challenging traditional silos, unjust hierarchies of evidence, and harmful demands for data and visibility. This comes at a time where the external environment is one of hostile and unjust structures, systems and legislation
- Resourcing: we want to work with funders, and act as a microfunder to redistribute resources to grassroots user-led groups and establish better practice
Long term hopes
By working on these themes as our priorities, we hope to contribute towards the following long term goals:
- For the plurality of lived experiences to be centred in the mental health space and acknowledged as legitimate knowledge
- For collective power to be built, sustained and exercised by grassroots groups
- For re-imagined mental health policy structures
- For the redistribution of power and resource in mental health
What we don’t do
Thinking critically about what we do not do went hand in hand with thinking about the work we do. A seat at the policy table comes at a cost. Too often, we are asked to be “the voice” of all survivors and service users in decision-making settings, when there is no such thing as one survivor and service user voice.
We recognise that our participation in certain processes or initiatives can often inadvertently validate or legitimise harmful work. We can end up not being heard, ticking someone else’s inclusion box, and perpetuating the status quo.
We have created a decision-making matrix to help us decide which work we should be taking on, clarifying what we can change and what we need to focus on. This work is still emerging, and these questions will change. We recognise that we have a lot to learn as we seek to put this into practice and we won’t always get it right. Some of the questions we are asking ourselves when considering taking on new pieces of work include:
- Is the work ethical?
- Is there scope to meaningfully influence as part of this work or effect change for our members?
- Where the work involves sharing or collecting people’s experiences with significant emotional or other investment, is the likelihood of people’s lived experience being heard proportionate?
- Is another organisation better placed to do this work?
We want our work moving forwards to be underpinned by a set of guiding principles, including:
- Centering lived experience in its plurality and acknowledging lived experience as a legitimate form of knowledge
- Prioritising self-determination in mental health care
- Committing to transformative justice and structural changes that transform the material conditions of people’s lives
- Open ways of working together: being rooted in collaboration; encouraging generosity, care and uncertainty in our ways of working
As a user-led organisation, we bring to the mental health sector a focus on lived experience and a commitment to social justice. We sit in a unique place, between the grassroots and the mainstream, and at the intersection of health, disability, and human rights. We have a renewed focus on racial and migrant justice.
We remain a network of community groups and people who have experience of mental distress, ill-health, or trauma. With our refreshed strategic direction, we hope to model different ways of working, reject harmful traditional policy structures, resist external pressures, and ground ourselves firmly in working with members towards the redistribution of power and resources in mental health and beyond.
We are not one voice: we are a network of many. While we as an organisation may campaign or take a stand on policy issues, informed by what we hear from our membership, we do not have – nor do we seek – the authority to speak on behalf of anyone. Our aim is to strengthen, amplify, and build connections with and between grassroots groups and people with lived experience so that they can create meaningful change for their and our communities.
We want to thank Lena Mohamed, who facilitated our reflection process and formulated our new Theory of Change. Thank you to NSUN members for your wisdom, insights, and inspirational ways of working: our thinking is grounded in what we have learned from you.