The participation of adult service users, including older people, in developing social care

Meaning and importance of participation

In this section:

• Legislation and guidance
• Outcomes of participation
• Successful participation
• Action points

Summary

• The background for service user participation.
• Why participation has become important.
• The tensions between different approaches to participation.
• The benefits of participation for service users and social care organisations.

The emergence of the service user movement over the past 20-30 years has been one of the most important developments affecting social care policy. Up until this point, social care provision was largely shaped by politicians, managers, academics, planners and practitioners, with service users and citizens generally having little or no say (Beresford, 2001).

Some of the reasons why service users and citizens now have more opportunities to share in decision-making include:

• concern about the nature of public services and their capacity to respond to the needs and aspirations of increasingly knowledgeable and diverse 'consumers’;
• greater questioning of the authority traditionally attached to professionals or other 'experts’;
• more appreciation of the significance of 'lay' knowledge and knowledge that has been gained through experience. (Barnes, 2005, p246)

Meanings

Service users

In this guide, we shall use the same definition of 'service user’ as used by Beresford (2001), while recognising that it has limitations:

The term 'service user’ [is used] as a shorthand…to describe people who receive or are eligible to receive…social care services…without seeking to impose any other meanings or interpretations upon it or them. (Beresford, 2001, pp9-10)

• Service user controlled organisations such as Shaping Our Lives argue that 'service user’ is an active and positive term with multiple meanings.
• The term includes people who are not currently using services and is based on self-identification as a service user.
• Alternatives such as 'consumer’ are believed by some to be a restrictive term techniques associated with market-led approaches, such as consumer satisfaction surveys (Beresford, 1988; Twigg, 2000).
• Carers, that is people who are providing unpaid care to a family member or friend, have separate and different needs for participation, and there is a separate SCIE resource on this (Roulstone et al., 2006).
• The interests of family carers and service users do not always coincide and we recognise that there are issues that may be of concern to both family carers and service users and that service users may also take on caring roles and vice versa.

Participation

• Participation is a contentious term that is often used interchangeably with words such as 'consultation', 'partnership' or 'involvement' (Croft & Beresford, 1992; Roberts, 2002).
• Some commentators have become concerned about the increasing use of the word 'participation’ in ways that they feel devalue non-participants, and do not take account of barriers such as poor housing or low income that might prevent participation (Colley & Hodkinson, 2001; Fergusson, 2005; Taylor, 2005).
• Participation operates at many levels; it can range from individual control over day-to-day decisions about what to wear, what to eat and how to spend one’s time, to collective decisions about service governance or commissioning (Joyce & Shuttleworth, 2001; Mordey & Crutchfield, 2004).
• Participation is not simply about being present or taking part but should be based upon having some influence over decisions and action (Kirby et al., 2003a).
• A contrast is often drawn between 'consumerist’ and 'democratic participation’. The former is based on the idea of market forces in public services, while the latter is favoured by service user movements with an emphasis on civil rights and citizenship (Beresford, 2002a).
• The consumerist approach aims at improving the quality of services by making them responsive to the needs and preferences of those who use them. It does not seek any transfer in power and control.
• The democratic approach aims to give service users the opportunity to participate in decision-making in the planning, management and review of services. It seeks to transfer power and control. (Andrews et al., 2004 pp306-307)
• Service user groups often feel ambivalent about consumerism and there is a particular concern that involvement with the professional agenda will take precedence over their own priorities for campaigning and empowerment (Barnes et al., 1999; Evans, 2004).

Part of the problem about getting involved is that you see the care organisation as the organisation that [funds] the service…so if you want to speak out you feel quite vulnerable if you are being directly supported by the organisation about which you want to complain or make an observation. (Managers, service user organisations)

• Participation can vary between organisations that are user controlled, that is where service users comprise the majority of those in charge, and organisations that operate on behalf of service users, such as those that provide support to service users.
• Another way of describing this difference refers to management-centred user involvement, where service users take part in existing structures using an agenda defined by the organisation, and user-centred user involvement where service users' objectives and priorities became those of the organisation (Robson et al., 2003).
• Differences in interpretation about what participation really means and the concerns about relationships between participation and funding show why it is important to set out clear aims and objectives for participation.