Defining Service Users And Carers

In the last 10 years the terms ‘service user’ and ‘carer’ have become part of the vocabulary of social work and social care. Before approaching potential partners, staff teams in some universities have worked towards developing a shared understanding of the groups and individuals identified by these terms.

Traditional definitions have sometimes focused only on people who are current or past service users, and hence have direct experiences to impart. Now, broader, more inclusive definitions are preferred. For example, in introducing a literature review for the Department of Health that was undertaken in preparation for the degree, Swift (14) states:

We have adopted both an administrative definition of ‘service users’ – those who are eligible to access social work services – but also include those who define themselves as potential users of social work services, either because they anticipate a future need, or because they choose not to use the services that are currently available to them.

Service user organisations give their own definitions. In 2003, Shaping Our Lives National User Network suggested the definitions and meanings that are set out in the following example overleaf.

As shown, service user organisations reject any use of the term ‘service user’ to imply that a person’s most defining characteristic is that of a passive recipient of services. Instead, they advocate that a service user should always be self-identifying and seen as a person first and foremost. They do not see themselves as fitting neatly into the various service divisions or client groups. Rather, they emphasise their active engagement in services as in other parts of their lives, and the experiences of services that they hold in common with each other.

Carers’ organisations also favour inclusive definitions. For example, a Carers UK definition states:

Carers look after family members, partners or friends in need of help because they are ill, frail or have a disability.

The leaflet, A commitment to carers (15) defines a carer of a person with a mental health problem as:

Someone who provides or intends to provide practical or emotional support to someone with a mental health problem. You may or may not live with the person you care for. You may be a relative, partner, friend or neighbour. You may be a young person but you now find yourself in the position of needing to support an unwell person.

In practice, once the meanings of the terms ‘service user’ and ‘carer’ have been discussed, many universities opt for broad definitions that include as many potential participants as possible and enable organisations and individuals themselves to decide whether they should get involved.

Example: Shaping Our Lives National User Network definitions and meanings
‘Service user’: what people sometimes mean by this termThe 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, a service user can be seen as 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.

What do we mean when we say ‘service user’?This is not what Shaping Our Lives National User Network means when we talk of ‘service users’. We see ‘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 service we want.

‘User-controlled’: what do we mean when we say ‘user-controlled’?There is a range of meanings of ‘user-controlled’. Here are some of the things Shaping Our Lives National User Network thinks ‘user-controlled’ could include:

* Service users decide what and how they want things done.
* 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.
* The group or organisation strives to work from an equalities approach to service users.