2004 Conference

This paper will discuss a research project being undertaken in palliative care that includes the experience, knowledge and perspectives of service users throughout the research process. This inclusion is achieved via a research User Advisory Group that work with the researcher influencing all stages of the research. The research itself is concerned with the accounts of local men and women with a range of life limiting conditions about what they need and experience from palliative care.

In the current health and political climate user involvement can easily be seen as an unproblematic, must-do activity, and service user involvement in research has followed suit (Beresford, 2002). It has been seen as an approach to counter marginalisation some service user group’s experience (Northway et al, 2001), however ownership and purpose of such projects can be a contentious issue and this research is no exception.

We will question the process of involvement for researcher and service users and concentrate upon how the research has been undertaken and produced. Some of those involved in this research will question how we have worked together on this research and how the service user contribution has influenced the research.


Cotterell ~ Phil

Phil Cotterell is a research Fellow in the Centre for Citizen Participation at Brunel University working with Peter Beresford. He is the lead researcher for the 'Identifying the impact of service user involvement on the lives of people affected by cancer' project funded by Macmillan from the 2006 NCRI Conference

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Cowdrey ~ Di

Members of the Service User Research Advisory. Di Cowdrey is a retired State Enrolled Nurse who has two children and two grandchildren. She has Chronic Obstructive Pulmonary Disease, other physical disabilities and is the chair of West Sussex Disability Network and vice-chair of Worthing Shopmobility. She worked on the research being discussed at conference since the beginning of the project.

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Paine ~ Mandy

Member of the Service User Research Advisory Group. Mandy is married with two sons and has end stage Chronic Obstructive Pulmonary Disease. She wants to challenge perceptions of life limiting conditions and, with Di, has developed a new group for people with any life limiting condition. Mandy has participated in a variety of different initiatives since involvement in the research being discussed at this conference.

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