Viktoriya Velikova

Systematic reviews have identified variation and inequity in care provision for people with pre-existing severe mental illnesses who have palliative or end-of-life care needs. To analyse service use and variation for people with severe mental illness in the last year of life in Wales. This is an observational retrospective cohort study between 2018 - 2023 using anonymised linked routinely collected health datasets within a data dashboard. We identified n = 4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group, people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Unscheduled care use in the last year of life is associated with comorbidity, indicating opportunities for upstream intervention to improve treatment, experience, and quality of life for people with severe mental illness. Further investigation, such as mixed methods approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery, is needed.

Objectives: To analyse service use and variation for people with severe mental illness in the last year of life in Wales. Methods: This is an observational retrospective cohort study between 2018 – 2023 using anonymised linked routinely collected health datasets within a data dashboard. Results: We identified n=4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Conclusions: Unscheduled care use in the last year of life is associated with comorbidity indicating opportunities for upstream intervention to improve treatment, experience and quality of life for people with severe mental illness. Further investigation such as mixed methodological approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery for this patient cohort alongside developments in data linkage that include general practice, social care, nursing and specialist palliative care inputs are needed. What is already known on this topic: There is little current data on people with severe mental illness in the last year of life, including service encounters such as unscheduled care. Routinely collected data for health service dashboards are a ready source that can provide new information on service use for this group. What this study adds: We now know how many people are dying in Wales with severe mental illness and their use of services in the last year of life. Comorbidity is associated with unscheduled service use and lower rates of specialist palliative care suggest a possible upstream intervention is possible. How this study might affect research, practice or policy: Detailed data linkage studies that make use of wider datasets including general practice, social care and nursing services are needed. Qualitative first-hand accounts from patients, their families and professionals could add new evidence. Specialist palliative care intervention earlier for patients with severe comorbidity may reduce use of unscheduled care. Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors. Competing interest: VV is employed by the Digital Health and Care Wales. The Centre for Trials Research at Cardiff University receives infrastructure funding from Health & Care Research Wales. The authors declare no other competing interests. Data availability statement: The dashboard has been developed by Digital Health and Care Wales in collaboration with the Welsh Value in Health Centre and NHS Wales Palliative Care clinicians. Use of the data and access to the dashboard is available to all NHS Wales staff and a number of Welsh Government professionals. All queries and requests for further information can be directed to the Information Services team at dhcw.info@wales.nhs.uk . Contributors: All authors conceived and designed the study. VV prepared the dashboard data for analysis. MC performed the analysis for this paper. All authors contributed to the interpretation of the results. MC wrote the initial draft of the manuscript and all authors critically reviewed and approved the final version.