Mental health professionals will be trained by patients and their families to stop writing care plans *for* people and start writing them *with* people. This matters because decades of policy and patient testimony have failed to change a stubborn reality: most mental health service users and carers are still excluded from the care planning process, even though they want to be involved. The research team will develop and test a training package for staff, delivered by people with lived experience, and will also create a new patient-reported outcome measure to track whether involvement actually improves. If the training works, the immediate impact is on the daily experience of thousands of people using community mental health services in the NHS. A successful model could then be adapted for physical healthcare settings, where similar gaps between policy and practice exist. The project will also produce practical tools—an audit checklist, materials to help patients push for change, and implementation guidelines—that up to ten NHS trusts can use to redesign how care plans are made.
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Aim: The aim of the programme grant is to improve user and carer involvement in care planning in mental health services. Major objective: We will develop, evaluate, implement and disseminate a user/carer-led training package for mental health professionals to improve the extent users and carers are involved in care planning. We will also develop and validate a patient reported outcome measure (PROM) to assess improvements in user/carer involvement. We will assess the clinical and cost effectiveness, feasibility and acceptability of this training using a cluster randomised controlled trial design. We will identify the individual and organisational barriers and facilitators to implementing effective user and carer involvement in care planning. We will utilise a multifaceted approach to comprehensively disseminate our findings. Background: Involving service users in their care and providing choice is at the centre of policy initiatives aimed at improving quality of care. This principle is enshrined and prioritised in healthcare particularly mental health care policy and guidelines. There is a wealth of evidence that users and carers want significantly more involvement in the care planning process. However there is substantial empirical evidence that the majority of users and carers are marginalised in the care planning process. Importance of Proposed Research: This research is important because it provides an opportunity to make a quality improvement across community mental health services. Of importance is that such a quality improvement has the potential to be translated over both mental health and physical care settings and hence benefit many thousands of patients. Research Team: Our team is multidisciplinary with significant content, methodological, clinical, academic, lived experience and educational expertise. Research environment: The research will be undertaken in NHS settings (Manchester Mental Health and Social Care Trust and Nottingham Healthcare Trust) in collaboration with the University of Manchester. Outputs and Impact: The outputs and impact of this programme grant have the potential to be substantial. We will have developed and delivered in partnership with users and carers a training programme to improve user and carer involvement in care planning. A user/carer patient reported outcome measure (PROM) (including a proxy measure for staff) will be developed and validated. We will know the effectiveness and cost effectiveness of user and carer involved care planning. We will have developed implementation guidelines based on our findings of the organisational and individual facilitators and barriers to user and carer involved care planning. We will develop tools to disseminate findings from the projects, including a care planning audit tool, user and carer materials for users and carers to empower them to facilitate change, and training materials which can be used across mental health services. We will offer these materials to up to 10 NHS mental health trusts and advise on improving user and carer involved care planning. Public Involvement: We have significant user and care involvement in all aspects of the programme grant. In our programme development grant we ran a research methods course for users and carers of mental health services to ensure that they could participate in the research process more fully. In addition this group served as our user carer consultation group during the programme development grant and has made a significant contribution to the ideas of the need to develop a patient reported outcome measure (PROM) and selecting the domains for which secondary outcomes for the cluster RCT should be based. The research methods group resulted in all participants wanting to be involved in the programme grant either as co applicants, steering group members, user and carer consultation group, research associates and or conducting a PhD/MPhil within the programme.
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