SCIE Report 5: Users at the heart - User participation in the governance and operations of social care regulatory bodies

By Frances Hasler

Published November 2003

Context

There is a growing realisation that service uses and carers should be involved in developing the services they receive. Their expertise as users of services and what they want from services should be heard. It is particularly important that service users are involved in the national organisations that regulate services, the workforce, education and training n social care. As national organisations, these bodies should model good practice and be an example for all social care organisations.

Purpose

This report examines the experiences and contributions of service users who serve on the boards of the care councils for England, Northern Ireland, Scotland and Wales, the Care Commission (in Scotland) and Topss England (now Skills for Care).

Audience

The report is intended to be used by the organisations listed above to improve their work with service users.

Messages from the report

Messages from the literature

• Models of participation from user-led organisations and could be more widely applied.
• Marginalised groups are still under-represented in user participation.
• There is concern that disabled people may be over-represented on boards, while other groups, such as drug users and people with learning disabilities, may be under-represented.
• Resistance or ignorance from senior professionals is still a barrier.
• More user involvement can lead to less power for user-led organisations.
• Outcomes often consist of small practical differences rather than major change.
• Satisfaction with the process of participation and its outcomes is greater among professionals than service users.
• There is debate about whether a consumer or citizen model of involvement is better.
• Service user representation should be probably resourced.
• Service users on boards need strong back-up networks.
• The outcomes of service user involvement are not systematically evaluated.

Messages from board members

• The interviews for the board posts were felt to be models of good practice
• Most service users felt that their access needs were met.
• Service users on boards are not service user representatives: they bring a user perspective, but have no formal accountability to users.
• Most service users felt the volume and complexity of paperwork was unnecessary.
• Some service users felt that they were under pressure to work harder than other board members.
• For people on benefits, receiving a fee for their work was problematic. There was also criticism of some organisations for not being proactive enough in offering expenses.

Messages from other stakeholders

• Overall, user participation on boards had been fairly smooth although a couple of people felt that service users were 'more demanding' than others (for example, their desire to be involved in every topic).
• Users were felt to contribute a vital perspective to the work, particularly in ensuring a user focus.
• Meeting service users' needs had not presented many problems. Several people produced accessible material and all had policies on paying expenses.
• All the people interviewed were concerned that service users at board level should be complemented by a user focus throughout the organisation.

Messages from the seminars

• There is a great deal of knowledge about what works and what doesn't in service user participation: the issue is putting it into practice.
• There is a lack of coordination between organisations pursuing the same goals.
• People should not assume that service users are vulnerable, but should be equal and empowered.
• A one-stop shop for information and expertise on user participation would be useful, as would a list of who is doing what in user participation.
• Research should look at what is blocking user involvement.
• The social care sector should adopt a sector-wide participation strategy.
• User-led organisations should be resourced to enable users to participate on their own terms.
• The process of involvement is important as well as outcome.
• Users should identify what changes they are seeking and help shape user participation to support those changes.
• Be clear about where decision making lies in an organisation.
• The impact of service user participation needs to be evaluated and a framework for doing this should be developed.
• A database of user-led organisation should be established.

Related Links

SCIE's resources on stakeholder participation