These have not been easy times for people who experience mental health difficulties.
Within the welcoming embrace of York’s historic walls on 24th October 2019 the National Survivor User Network (NSUN) brought people with lived experience from across England together for the network’s annual general meeting. In the shadow of the then-date of UK leaving the EU on 31st October, the event focused on justice, solidarity and hope for user-led organisations in mental health while also acknowledging and exploring the struggles they and the people who make and use them face.
Taking as its theme ‘The Crisis of User-led Organisations’, the AGM explored the past, present and future not just of NSUN but of the greater user-led movement in mental health. Across the day speakers from across the network placed the work of groups led by people with lived experience of mental health illness, trauma and distress in a wider personal, political and social context exploring what NSUN’s slogan ‘together we are stronger’ actually means in practice.
2019 is a turning point not just for NSUN but for the UK and those of us who live with mental health difficulties across the country. As NSUN has shown, a decade of austerity has left the nations user-led groups and organisations struggling with reduced resources and increased demand. User-led organisations have kept going until they couldn’t keep going anymore, battling lack of funds, lack of support and personal and organisation burnout. NSUN itself survived these times by slimming itself down and refocusing on what is important to members, completing a two year internal development process and securing greatly reduced funds. Many member organisations were not as lucky.
Official business on the day included welcoming a number of new trustees to NSUNs board of trustees, signing off the annual accounts and welcoming NSUN’s new Chief Executive Akiko Hart who will be replacing long-standing and much-loved outgoing chief executive Sarah Yiannoullou in the new year.
Over the last decade, the issue of mental health has risen up the national agenda in a way that couldn’t have been predicted when NSUN was founded. More than ever, people care about mental health and the things that happen to those who live with the kinds of mental health difficulty that do not go away.
Urgency and the need for action in the face of years of neglect and injustice focused the speeches and open-mic soapbox sessions and animated the discussions in the packed room as members from across the country caught up with each other.
In a year that saw the publication of the Independent Review of the Mental Health Act, the promises of two different Prime Ministers and a political deadlock which would lead to the announcement of a general election days after the AGM, the meeting in York this year reasserted the need for user-led organisations to be there for people who need them and to truly represent an independent direct voice of those who actually have to live with the results of mental health policy and of government decisions.
Across the day, speeches from NSUN associates, friends and network members explored the past, present and future of user-led organisations and NSUN’s role in supporting and bringing them together into a collective movement.
Sarah in her final AGM address talked about how difficult the last couple of years have been but also how the process of saving NSUN from closure gave the organisation a renewed sense of purpose. She spoke about the ways in which independent user or lived experience voices had been edged out of discussions and the way that NSUN is now looking to protect and celebrate the history of lived experience of mental ill-health to prevent that history being lost. Without this history and collective sense of who we are, lived experience can be co-opted and corrupted and used as a rubber stamp rather than being a political voice in itself. NSUN, said Sarah, will be safeguarding the past of the movement in itself and as an element of other movements for social justice; exploring and taking action in the present and trying to help wherever possible to build the future of user-led organisations and groups as part of people’s lives. She emphasised the need to embrace the diversity of experiences that make up NSUN’s membership and the need to make NSUN a safe space for a range of views, ideas and actions rather than trying to hammer all lived experience into one homogenous voice. Taking stock of Sarah’s time as the centre of NSUN lent the event a reflective tone, but one that was focused on goals for the future, not old victories and wounds.
Anne Beales, there at NSUN’s inception, set NSUN in context. The user movement began as one of resistance to poor treatment and to oppression with stages being stormed, demonstrations and hiding people from being detained. In the past, Anne said, the system segmented those with mental health difficulties in institutions. It was only when people found ways of coming together outside of the system that it was possible to begin to develop a vision of what people actually wanted as an alternative. Anne spoke about the way that recovery, a much derided term now, began as a vision where people with mental health difficulties defined what happened to them, where services could connect people to their best selves and to their community and could help people become whatever they wanted to be. She was enraged by this idea being co-opted and put to use in maintaining a status quo rather than changing it. Anne said that people with mental health difficulties have been trained to be polite and make quiet requests and that the mental health system had created its own voices to listen to.
Without finding ways to come together with our peers, Anne said, we end up with just individual and individualised voices, not collective ones. “We know what hurts and what works,” Anne said, and we do this work “because we can’t let our friends down.” Mental health professionals don’t talk about mental health the way those with lived experience do, Anne said, and she challenged the room to imagine what would happen if the money spent on anti-stigma campaigns was given to the implementation of a modest manifesto drawn up by people with lived experience of mental health difficulty. For Ann, the mistake her generation of activists made was being to humble. “How dare services corrupt our idea of recovery and use it to endorse things that harm us?” she asked. “We’ve had to live through a decade of austerity, a time of hate, division, where racists kill others. It maddens us, it’s us that are discriminated against that need to put things right.” She received a standing ovation.
The event was haunted by the breaking news story that 39 people trying to enter the UK were found dead in a lorry in Essex. Injustice, intolerance and prejudice brought Anne Beales to tears. Dominic Makuvachuma talking about Reigniting the Space, a group of BME user/survivors working in collaboration with NSUN to recreate a national platform referenced it also.
Talking about Reigniting the Space hosted by NSUN, Dominic spoke about the sobering experience of trying to map BME user-led groups and finding that it was ‘like a ghost town’. Reigniting the Space began as a way of reconnecting, protecting and keeping safe the history of BME mental health activism. “As a black African man,” Dominic said, “I felt a sense of homelessness; that there was no space for us to meet on our own. Something feels like it has been lost over the last decade or so.” Dominic and colleagues had a sense that there are BME mental health activists, but their ways of working and organisations don’t look like the user-led organisations of the past.
Mark Brown spoke about the importance of user-led groups in mental health as the holders of a different history of mental health; one that isn’t held by professions or institutions but by people and communities. He spoke of this history as being vital as a way of understanding ourselves and how injustice works in mental health. People are interested in more than just conversations in mental health; people want political and social change. An entire generation of mental health activists have grown up both with the internet as a way of finding each other and many do not remember what life was like before austerity. Finding ways to tell this people’s story of mental health, he said, is what many new to thinking about mental health are looking for: the story of a collective ‘us’.
Dorothy Gould, speaking of her work around mental health and human rights, said that she had found more solidarity than she anticipated both nationally and internationally with other discriminated against groups, endorsing the theme of solidarity not just within our own lived-experience community but with other oppressed and marginalised groups.
The Survivor Research Network, represented by Stephen Jeffreys and Dina Poursanidou, shared the need for research of our own and also for critical thinking about what lived-experience means in a political and professional system which is geared toward using it in ways that take forward some agendas over others. Alison Faulkner shared more of NSUN’s work in the last year, endorsing that things work best when people can find ways of being together with each other and of finding where injustice can be challenged.
The soapboxes and group activity to explore potential future campaigns and actions for NSUN all spoke to the idea of collective action, of solidarity and of making things happen because if we don’t, no one else will.
Ending with a tearful farewell to Sarah and a collective embrace of the possibilities of the future, the NSUN AGM for 2019 sounded a positive note of warmth and human connection. Handing over to Akiko, Sarah said that she felt more excited for the future of NSUN than ever, even as times were getting harder. NSUN is nothing without its members, she said, and it’s when we can come together that we really feel what it means to be amongst friends. Justice, hope, togetherness, history, solidarity, love for each other and practical actions is where NSUN has its value.
The crisis of user-led groups is real. The NSUN AGM this year showed why that crisis matters.