About the National Survivor User Network

David Crepaz-Keay

Openmind 149, Jan/ Feb 2008

The National Survivor User Network (NSUN) is not the first national network of its type, and it probably won't be the last. We aim to increase the diversity and impact of survivor voices. We want more people to take control of their own lives and to support each other to achieve this. The network is not here to speak on behalf of others, nor is it a cynical attempt by the big mental health charities to take over the user movement. I first joined Survivors Speak Out (SSO) in the late 1980s. Although the language may have changed since then, none of the aims outlined above would have seemed out of place then and nor would any of the challenges NSUN now faces have surprised us nearly 20 years ago.

Giving survivors a voice

When you receive a psychiatric diagnosis your life changes forever. You live the rest of your days in a box marked 'nutter'. Your life will probably be shorter, your income lower and your opportunities significantly reduced. That is discrimination in action. Alongside this, everything you say is heard as the words of a mad person. In many ways, this devaluation, and sometimes complete removal, of a person's voice is the cruelest discrimination of all. When everyone else tells you that they know what's best for you, and any disagreement or dissent you express is seen as a symptom of your illness, that is when you most need your voice.

The voluntary sector

The voluntary sector is not the voice of service users - a lot of the sector is not even particularly good at service user involvement - but I don't believe it is the evil empire it is sometimes cast as. No network can succeed in isolation. SSO only stepped up from operating out of people's bedrooms with voluntary sector support. Without the Mental Health Foundation and the King's Fund, it would never have had an office or someone to answer the telephone. Without Mind, we would never have got the early newsletters copied and posted. Similarly, NSUN cannot thrive on its own. We could not receive funding or employ staff without Together. Without Mind, our launch would still be at the planning stage. The voluntary sector has changed beyond recognition since the late 1980s. Then, almost no active survivors, bar Jan Wallcraft at Mind Link, had significant roles within the large national organisations. Now, most have such people at senior decision-making levels, on boards and throughout the staff team. At the same time, many of these organisations struggle with conflicts between providing services on statutory sector contracts and campaigning against their new paymasters. We and they will have to work with increasing skill to take on these challenges.

What we need to do

Against this complicated backdrop, NSUN needs clear goals to achieve with the significant resources at our disposal. Survivor involvement is at its strongest ever in many parts of the country, but it is patchy and fragmented across the territory as a whole. Mapping the current position will help to identify and celebrate our success and lead us to our priorities for urgent development. We're funding two regional initiatives to highlight issues in the north-east and south-west of England. We already know that survivors from black and minority ethnic groups need resources and support now, and we're working on this with Catch-a-fiya and others. We began a second priority stream of work on forensic service users at the end of 2007, and we have already identified other priority areas.

What success will look like

Our launch event brought people together from across England and beyond. A successful network will need to do this in every part of the country. NSUN will build a knowledge bank of what works well, the skills we need to succeed, the groups who offer training in those skills, and the sources of funding available to buy them. We will help commissioners to buy survivors' skills more effectively, both as service providers and as designers of future services. We need to challenge and support the regulators to ensure that they really do put first the needs and demands of those least often heard.

Above all, we will refuse to acknowledge absurd phrases like 'hard to reach' when they are used to mean "It's too much like hard work" or "We don't understand/like what we might hear." We will not let people see NSUN as an easy alternative to getting into communities and getting into real dialogues. In short, NSUN is here not to get a few survivors around other people's tables, but to drag the tables out of the dusty boardrooms and into the real world where they'll find out what the 'hard to reach' really need.