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Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London

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  • Rutter, Deborah
  • Manley, Catherine
  • Weaver, Tim
  • Crawford, Mike J.
  • Fulop, Naomi

Abstract

User or patient involvement (UI) in the planning and delivery of health services is an aspiration of many industrialized economies, and has been promoted by United Kingdom (UK) governments for over two decades. This paper reports the findings of qualitative case studies of UI in two mental health provider Trusts in London. Semi-structured interviews were conducted with a variety of stakeholders, including Trust staff at all levels and user group members, to compare the expectations of diverse stakeholders and the extent to which these were achieved. We found that UI remained in the gift of provider managers: providers retained control over decision making, and expected users to address Trust agendas and conform to Trust management practices. Users wanted to achieve concrete changes to policies and services, but had broader aspirations to improve the status and condition of people with mental health problems. Suggestions are made about the direction of future strategies to improve UI.

Suggested Citation

  • Rutter, Deborah & Manley, Catherine & Weaver, Tim & Crawford, Mike J. & Fulop, Naomi, 2004. "Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London," Social Science & Medicine, Elsevier, vol. 58(10), pages 1973-1984, May.
    • Handle: RePEc:eee:socmed:v:58:y:2004:i:10:p:1973-1984
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    Cited by:

    1. Lorenza Magliano & Andrea Fiorillo & Heidegret Del Vecchio & Claudio Malangone & Corrado De Rosa & Carla Bachelet & Giampiero Cesari & Rosa D'Ambrogio & Francesca Fulgosi Cigala & Franco Veltro & Paol, 2009. "Development and Validation of a Self-Reported Questionnaire On Users’ Opinions About Schizophrenia: a Participatory Research," International Journal of Social Psychiatry, , vol. 55(5), pages 425-441, September.
    2. Lydia Lewis, 2014. "User Involvement in Mental Health Services: A Case of Power over Discourse," Sociological Research Online, , vol. 19(1), pages 1-15, February.
    3. Haldane, Victoria & Singh, Shweta R. & Srivastava, Aastha & Chuah, Fiona L.H. & Koh, Gerald C.H. & Chia, Kee Seng & Perel, Pablo & Legido-Quigley, Helena, 2020. "Community involvement in the development and implementation of chronic condition programmes across the continuum of care in high- and upper-middle income countries: A systematic review," Health Policy, Elsevier, vol. 124(4), pages 419-437.
    4. Martin, Graham P., 2008. "Representativeness, legitimacy and power in public involvement in health-service management," Social Science & Medicine, Elsevier, vol. 67(11), pages 1757-1765, December.
    5. Laura Chisholm & Sue Holttum & Neil Springham, 2018. "Processes in an Experience-Based Co-Design Project With Family Carers in Community Mental Health," SAGE Open, , vol. 8(4), pages 21582440188, October.
    6. Croft, Charlotte & Currie, Graeme & Staniszewska, Sophie, 2016. "Moving from rational to normative ideologies of control over public involvement: A case of continued managerial dominance," Social Science & Medicine, Elsevier, vol. 162(C), pages 124-132.
    7. Marit B Rise & Marit Solbjør & Aslak Steinsbekk, 2014. "Experiences from the implementation of a comprehensive development plan for user involvement in a mental health hospital: A qualitative case study," International Journal of Social Psychiatry, , vol. 60(4), pages 387-395, June.
    8. Aveling, Emma-Louise & Martin, Graham, 2013. "Realising the transformative potential of healthcare partnerships: Insights from divergent literatures and contrasting cases in high- and low-income country contexts," Social Science & Medicine, Elsevier, vol. 92(C), pages 74-82.
    9. de Freitas, Cláudia & Martin, Graham, 2015. "Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare," Social Science & Medicine, Elsevier, vol. 135(C), pages 31-39.
    10. Marianne Storm & Kjell Hausken & Knud Knudsen, 2011. "Inpatient service providers’ perspectives on service user involvement in Norwegian community mental health centres," International Journal of Social Psychiatry, , vol. 57(6), pages 551-563, November.
    11. Trude Andreassen & Adriana Melnic & Rejane Figueiredo & Kåre Moen & Ofelia Şuteu & Florian Nicula & Giske Ursin & Elisabete Weiderpass, 2018. "Attendance to cervical cancer screening among Roma and non-Roma women living in North-Western region of Romania," International Journal of Public Health, Springer;Swiss School of Public Health (SSPH+), vol. 63(5), pages 609-619, June.
    12. Djellouli, Nehla & Jones, Lorelei & Barratt, Helen & Ramsay, Angus I.G. & Towndrow, Steven & Oliver, Sandy, 2019. "Involving the public in decision-making about large-scale changes to health services: A scoping review," Health Policy, Elsevier, vol. 123(7), pages 635-645.
    13. Davidson, Joyce, 2007. "Caring and daring to complain: An examination of UK national phobics society members' perception of primary care," Social Science & Medicine, Elsevier, vol. 65(3), pages 560-571, August.
    14. Westerink, Henrike J. & Oirbans, Tom & Garvelink, Mirjam M. & van Uden-Kraan, Cornelia F. & Zouitni, Ouisam & Bart, Hans A.J. & van der Wees, Philip J. & van der Nat, Paul B., 2023. "Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review," Health Policy, Elsevier, vol. 138(C).
    15. Diana Rose & Pete Fleischmann & Peter Schofield, 2010. "Perceptions of User Involvement: a User-Led Study," International Journal of Social Psychiatry, , vol. 56(4), pages 389-401, July.

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    Keywords

    Mental health User involvement UK;

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