Definition of 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, experience of mental ill-health, distress, or trauma.

To explore this concept more, you may be interested in reading “Mapping the Lived Experience Landscape in Mental Health” by Rai Waddingham.

Definition of service user (based on 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’ is often 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 National User Network 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 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.
• Being a service user means that we can identify and recognise that we share a lot of experiences with a wide range of other people who use services. This might include, for example, young people with experience of being looked after in care, people with learning difficulties, mental health service users, older people, physically and/or sensory impaired people, people using palliative care services and people with drug and alcohol problems.

This last point about recognising our shared experiences of using services, whoever we are, makes us powerful and gives us a strong voice to improve the services we are given and to give us more control and say over what kind of services we want.

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. That is to say that a service user can be seen to be someone who has things ‘done to them’ or who quietly accepts and receives a service. 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 National User Network means when we talk of ‘service users’.

Definition of survivor in the context of mental health (based on 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).

Definition of 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. 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”, but if it does, it is usually outside 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. 

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“.

Definition of 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.

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“.

Definition of service user led or user-controlled (or “survivor-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 / service user involvement / survivor involvement / involvement / co-production:

Definition of user involvement (based on 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 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 professionals visiting user/survivor groups.

To find out more about co-production, take a look at NSUN’s 4Pi Involvement Standards.

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.

The term ‘movement’ implies that these individuals, groups and organisations share some common goals and are moving in a similar direction.