The National Survivor User Network (NSUN) is a network of grassroots, user-led mental health groups and people who have lived experience of mental ill-health, distress, and trauma. We connect, support, and amplify the voices and work of our members and work to redistribute power and resource in mental health.
The network was initially set up to build a more united and confident mental health service user/survivor movement comprised of community-based and local user-led groups. It didn’t aim to be the “one voice” of survivors and acknowledged that groups can have different views to one another on topics in mental health. It recognised the isolation, discrimination and disadvantage experienced by mental health service users and survivors and their needs beyond clinical treatment.
This page contains information about the language we use, our history, and a glossary of terms.
Language
What do the words “survivor” and “user” mean?
We have our roots in the UK mental health service user/survivor movement. “Survivor” in our name references those of us who identify as survivors of mental distress and/or trauma, including traumatic experiences within the psychiatric system. “User” comes from the term “service user” and refers to those of us who use, or have used, mental health services. We often use the term “user-led” with reference to groups/organisations that are not just working on user involvement in service delivery – it refers more broadly and simply to groups that are led by and for people with shared identities or lived experiences.
It is important to note that people with lived experience of mental ill-health, distress, or trauma may not be “service users” as they may not be engaged with services, either through choice or exclusion. They also may not describe themselves as “survivors”.
As people with lived experience, we may describe ourselves in many different ways, including through using the reclaimed term “Mad“, and we may or may not identify as d/Disabled. We generally use the phrase “people with lived experience of mental ill-health, distress and/or trauma” to describe our membership, rather than talking about “service users” and “survivors” only.
Why do we use the phrase “mental ill-health, distress and/or trauma”?
We stand for autonomy, choice, and self-determination: people can and should be able to understand and describe their experiences in whichever way feels right to them. We are committed to a plurality of understandings of mental distress and madness. This means that we try to take a critical and nuanced approach to the language we use. It is our place to amplify many voices and perspectives, not argue for one “correct” conceptualisation, ideology, or model, though we do stand against the harms caused by conceptualisations that pathologise, individualise, and depoliticise distress.
We feel that the phrase “mental ill-health, distress and/or trauma” best summarises and recognises the different ways people may describe and conceptualise their own identity and experiences.
Only using one of either “mental ill-health”, “distress”, or “trauma” might exclude those who do not identify with the single chosen word/phrase. For example, some of us reject the notion of illness or being told we are “disordered”, and understand our experiences as mental or emotional distress, or as the result of trauma, while some of us do understand our experiences as illness, or as being unwell. This is related to the ways in which we might to differing extents reject (and/or have been harmed by) or identify with (and/or have found useful) – labels that may have been given to us and different “models” of mental ill-health, distress and trauma, which may be interpreted as locating the “problem” or “cause” in different places, generally within versus outside of the individual (for example, the medical model or the social model).
For more definitions on language used in the mental health lived experience landscape and the service user/survivor movement, scroll down to the glossary.
History
In 2003 service user-led research, coordinated by Jan Wallcraft for the User Survey Steering Group and funded by the Sainsbury Centre for Mental Health, resulted in the report ‘On Our Own Terms’. It urged the formation of a national network to bring individual mental health service users and groups together to encourage good practice and build the capacity of the sector. Inspired by this report, the Sainsbury Centre funded a number of meetings and a conference in London in 2005 to agree on some practical actions based on the recommendations.
A Steering Group organised a conference focused on how to set up a national service user/survivor network. Nearly 200 service users and survivors attended the “Doing It For Ourselves” conference in Birmingham in March 2006. The National Planning Group that grew out of the conference included representatives from a whole range of service user and survivor led groups.
NSUN was launched in 2007 after funding for five years was obtained from Comic Relief and the Tudor Trust and a hosting arrangement was negotiated with the mental health charity Together for Mental Wellbeing. NSUN received invaluable support with financial procedures and human resources but remained self governing throughout the initial three years. The National Planning Group was then dissolved and replaced by a management committee, selected by an independent panel of service users and survivors. A launch conference was held in November 2007 in Poole, Dorset.
In 2010 NSUN became an independent organisation/charitable company and hosted its first Annual General Meeting in 2011.
We now stand at over 5,000 members and our mission, aims and objectives remain the same today.
If you are interested in learning more about the history of the service user/survivor movement as a whole, visit the Survivor History Group website.
Glossary
Lived experience
When we talk about “lived experience”, we are usually referring to direct, first-hand experience of a particular issue – in the case of NSUN, primarily the experience of mental ill-health, distress, or trauma.
To explore this concept more, you may be interested in reading our 2021 report “Mapping the Lived Experience Landscape in Mental Health” or our 2024 report “Exploring ‘community’ and the mental health lived experience landscape“, which touches upon the ways that this term can be used to homogenise us, and can be co-opted for interests other than our own.
Service user
Definition of service user (taken from Wallcraft, 2003)
A service user is someone who is receiving or using (or has received or used) primary or secondary mental health care services.
The term ‘service user’ or ‘user’ may be seen as referring to those who use mental health services and are more concerned with service reform and improvement than with radical challenge.
However, some people strongly dislike being called ‘users’ – including because they feel they did not choose to use services.
Definition of service user (taken from Shaping Our Lives)
Shaping Our Lives sees ‘service user’ as an active and positive term, which means more than one thing. It is important that ‘service user’ should always be based on self-identification. But here are some of the things we think it means.
- It means that we are in an unequal and oppressive relationship with the state and society.
- It is about entitlement to receive welfare services. This includes the past when we might have received them, and the present. Some people still need to receive services but are no longer entitled to them, for many different reasons.
- It may mean having to use services for a long time which separate us from other people and which make people think we are inferior and that there is something wrong with us.
What people sometimes mean by the term ‘service user’: the term ‘service user’ can be used to restrict your identity, as if all you are is a passive recipient of health and welfare services, someone who quietly accepts having things ‘done to them’. This makes it seem that the most important thing about you is that you use or have used services. It ignores all the other things you do and which make up who you are as a person. This is NOT what Shaping Our Lives means when we talk of ‘service users’.
Survivor
Definition of survivor in the context of mental health (taken from Wallcraft 2003)
The use of the term ‘survivor’ is seen as implying that the person has come through traumatic experiences (related to their mental health and/or mental health services) and is committed to campaigning for change. In some cases, it is used by people who no longer depend on services. Some respondents find this term more positive than ‘service user’, while a few think it is too dramatic and divisive.
Some people suggested alternative terms that could be used instead of ‘user’ or ‘survivor’. One group refers to people with ‘primary’ experience of mental health services (service users or survivors) and people with ‘secondary’ experience (family, friends and carers).
The service user/survivor movement
Definition of the movement (‘On Our Own Terms’ report, Jan Wallcraft, 2003)
The ‘service user/survivor movement’ is a term used to describe the existence of numerous individuals who speak out for their own rights and those of others, and local groups and national organisations set up to provide mutual support or to promote the rights of current and former mental health service users to have a voice. Group members and individuals may call themselves ‘survivors’, ‘service users’, ‘clients’, ‘ex-patients’ or other similar terms.
Our thoughts on the term
The ‘survivor movement’ is most often used to describe the movement of people who have experienced harm in the mental health/psychiatric system and have campaigned for change and reform, but the term implies that these individuals, groups and organisations share common goals and are moving in a similar direction. However, there is a great diversity of views, opinions and experiences within the lived experience landscape. For example, some people want to improve (reform) the system, others want to abolish it entirely (though this may include incremental steps of reform). This is something NSUN has tried to unpick in our 2024 publication “Exploring ‘community’ and the mental health lived experience landscape“.
User-led group
The phrase “user-led” to describe groups is one that often confuses people. These are groups or organisations led by people who have direct experience of a particular issue, situation, circumstance or problem. They may also be described as “by and for” groups. The people who make up the group are sometimes “service users” themselves, sometimes they do not use services through choice or through their inaccessibility. The group itself may or may not provide a “service”, such as peer support or mutual aid, but if it does, it is usually outside/independent of statutory settings. These are people who have decided to get together to make happen things that charities, the public sector or the rest of the community can’t or won’t do.
“User-led” can also be used by groups of people with lived experience working within statutory services to do “user involvement” or “coproduction” for/with that service. The organisation they work within is not user-led, but the group (for example an advisory board) itself is.
To understand more about grassroots user-led groups and their place in the mental health world, read our piece on the crisis of user-led groups from World Mental Health Day 2019 or our 2020 report “What Do User-Led Groups Need“.
Grassroots group
User-led, lived experience-led or survivor-led groups are often grassroots groups. This means they are not necessarily organised traditionally or registered as formal charities, for example. They work outside of statutory systems, services and structures and are deeply embedded in/part of their communities: they are “by and for” them.
To understand more about grassroots user-led groups and their place in the mental health world, read our piece on the crisis of user-led groups from World Mental Health Day 2019 or our 2020 report “What Do User-Led Groups Need“.
Service user-led or user-controlled
There is a range of meanings of ‘user controlled’. Here are some of the things Shaping Our Lives and NSUN thinks ‘user controlled’ could include:
- that service users decide what and how they want things done (service user-run group)
- that the majority of the controlling group (usually the management committee) of the organisation are users of the organisation or members of the group for whom it was set up (service user-led group)
- that the group or organisation strives to work from an equalities approach to service users.
User involvement/co-production
Definition of user involvement (taken from Wallcraft, 2003)
The term ‘user involvement’ is used in this report to mean the various ways in which mental health service users/survivors are helping to change mental health and social services.
This often works through service users/survivors becoming members of committees, advisory boards, and similar along with professionals and people from voluntary organisations, though it can include a number of other ways, such as conferences, discussion forums, open days, service users/survivors acting as paid consultants, or research participants.
To find out more about co-production, take a look at NSUN’s 4Pi Involvement Standards.
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