Identifying and tackling inequalities for people with severe mental illness needing palliative care: Knowledge needs for addressing barriers across care systems.

Summary

Improving social care of people with severe mental illness is a national and international priority. Our previous research found that people with severe mental illness who develop life-threatening conditions often miss out on care or have their condition mistaken for mental symptoms. They and their support networks can find it difficult to access the information needed to get help from different parts of the care system, leading to unequal care and reduced support. This project will assess the evidence relating to palliative and end-of- life care for people with severe mental illness who have an additional diagnosis of a life-threatening illness that requires cross-sector support.
Severe mental illness is a term used in policy and research and is taken to mean people with diagnoses such as schizophrenia. Palliative care is about making people as comfortable as possible and maintaining their quality of life when they have a terminal illness. End-of-life and palliative care includes care provided in hospitals, hospices and social care provided in the home or community. National policy and guidance confirm that this is an important, but neglected, area of research. In addition to assessing existing evidence, we will also work with people using social care services, and their networks, to describe and where possible follow their care journeys. We will conduct research interviews with people using services and their formal and informal support networks. We will show pathways to care, barriers and challenges experienced by people with severe mental illness and a subsequent terminal physical illness. We will focus on the knowledge needs of individuals and their support networks that would help them better negotiate and advocate for care. This new evidence is needed to provide information to empower people to address experienced inequality and help social care systems to improve and develop their services to vulnerable people.