Beyond the usual suspects, towards inclusive user involvement

Peter Beresford, Shaping Our Lives

The focus of this new report, published by Shaping Our Lives, is to make it possible for everyone who wants to, to be more involved in and have more say over their lives and the services they use to live them. The report draws on findings from a three-year national research and development project supported by the Department of Health, which aimed to find out how inclusive user involvement could be achieved. This user controlled project was particularly interested in looking at why certain groups of ‘seldom-heard’ service users experience barriers to involvement and how these barriers can be overcome.

Key findings from the project include:

  • Some of the key groups that are often excluded from user involvement are people with alcohol and drug problems, young people, people who communicate differently, people who use residential services, people with learning difficulties, refugees and asylum seekers, people with complex support needs, older people and people from black and minority ethnic groups.
  • The best way of involving such service users is reaching out to them and their communities rather than waiting for them to come to you.
  • Service users and their user led organisations are especially well placed to build bridges with seldom heard groups.
  • Effective and meaningful involvement means exploring, evaluating and monitoring new and creative ways of engaging with and involving these groups.
  • There is a need to ensure that the physical, information, communication and cultural access needs of service users are met.
  • Sensitive approaches are needed to avoid or overcome the resistance of ‘gatekeepers’ who can disempower service users, particularly those receiving residential and institutional services.
  • Service users are likely to benefit from capacity-building to support their empowerment and involvement.
  • The judgmental quality of public discussion about some groups of service users helps create and sustain negative public attitudes, including among other service users.
  • There is increasing interest in campaigning for change via social media and social networking sites.

The report is available to download from the Shaping Our Lives website and comprises:

There is also a series of practical resources to download from the Shaping Our Lives website