International Observatory on End of Life Care
The International Observatory has a team of social scientists and clinicians based at Lancaster who collaborate with colleagues all around the world in an effort to provide research evidence to impact the development of hospice and palliative care.
The work of the Observatory places a high value on studies that focus on exploring the experiences of giving and receiving care, from the perspectives of those most directly involved. They are interested in explaining the experiences of patients and carers in ways that can affect policy and practice and contribute to the education of professionals.
Joseph Rowntree Foundation
The Joseph Rowntree Foundation has produced a report on user involvement for the seriously ill. You can find this report at: www.jrf.org.uk/knowledge/findings/socialcare/271.asp
National Council for Palliative Care
The National Council for Palliative Care set up a User Involvement Steering Group made up of service users, carers and committed professionals. This group has significantly influenced the council and was responsible for the production in November 2004 of the council publication Listening to Users which aims to help professionals address user involvement in palliative care.
You can find out more about its work on user involvement at www.ncpc.org.uk/policy_unit/user_involvement.html
Rosetta Life uses the creative process as a healing process and works through a wide range of art forms. These aim to provide the dying and the bereaved with pleasurable and rewarding experiences that are also educational. Rosetta Life believes that personal storytelling can help people make sense of their lives and can maximise the quality of life in the encounter with death.
St Christopher’s Hospice
St Christopher's is widely acknowledged as the pioneer of the modern hospice movement and has earned a reputation for excellence in clinical practice, research and education.
An article describing recent user involvement activities at St Christopher's Hospice was published in Palliative Medicine in 2003 (volume 17, pages 375 to 377) called Brief report on user involvement at St Christopher's Hospice by Kraus F, Levy J et al. This article is available from St Christopher's bookshop for £0.30.