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

Conclusion - What we know about participation

In this section:

The literature, practice survey, and consultations with service users showed that there is now a growing understanding of what service user participation means.
Organisational knowledge often tends to focus upon structures and procedures for participation whereas service users tend to be more interested in the processes and outcomes of participation.
The two strands of participation and quality improvement need to become more linked (Beresford & Branfield, 2006).

Evidence from the literature, practice survey, and service users all suggested that consumerist models of participation continue to predominate over democratic approaches, hence less power and control is transferred to service users.
This means that most service user participation is currently achieved through consultation meetings - this format rarely leads to increased accountability and may exclude many service users.
While almost all organisations included in the practice survey had developed policies for the reimbursement of expenses, support costs, and payment for service users, comparatively few had devolved these funds to service user organisations to manage themselves.

The consultations with service users and the practice survey highlighted the difficulties of translating knowledge into practice.
Service users, managers, and practitioners identified the importance of making sure that service users felt valued, knew that their contribution would make a difference, and received feedback on the outcomes of their participation.
They also agreed on the importance of choosing accessible venues, making sure that documents were available in multiple formats, avoiding jargon, being welcoming and friendly, and providing support to service users throughout the process
Consultations with service users suggested that, while these practices did exist, they were not implemented consistently.
It is not clear to what extent participation means helping service users in making choices about their daily lives. There is a danger that it is seen as a 'one off’ activity rather than something which should be embedded in an organisation’s everyday practice.

Service users wanted to have their expertise acknowledged.
The research for the guide highlighted the need not to assume that participation creates expertise, although it may do, but to recognise that people using services also bring knowledge and experience with them.
The practice survey suggested that the most frequent way of building on the expertise of service users was by involving them in staff training but that service user involvement at strategic levels remained comparatively rare outside of service user-led organisations.
Much of this training was aimed at frontline staff, rather than at managers or service planners.
Service user knowledge is also extensively used in the voluntary sector when service users become active in organisations campaigning or providing services. However, we continue to know very little about how these transitions from service user to volunteer, or from service user to paid worker, are managed and what the experiences of service users who make these changes have been.

This guide has identified that service user participation in social care must be considered within the wider agenda.
Policy aimed at reducing social exclusion has highlighted the way in which different factors influence each other. For example, disabled people see access to transport as a key factor in promoting participation.
A key concern among service users is the impact of the benefits and taxation systems upon payment for service users and the receipt of benefits in kind (Turner & Beresford, 2005).

The number of service users who are 'seldom heard’ in participation initiatives is considerable.
We currently have very little information about what works for service users with a communication impairment, who are lesbian, gay, transgendered or bisexual, who are from a Black or minority ethnic group or who are living with dementia. Strikingly, although there is a growing body of research on how to engage people with dementia (Wilkinson, 2002) which has not been incorporated into mainstream participation strategies.
Much participatory activity seems to take place within a single group of service users when there are benefits from looking at participation across different service groups and across different sectors.
Social care could also learn from the community development field where there have been many attempts to experiment with innovative ways of involving people, such as drama or music.