Lived experience study in mental health

Major new mental health study inspired by lived experience: Experts at Northumbria University are supporting a £1 million research study, funded by the National Institute for Health and Care Research (NIHR), which aims to improve the outcomes and experiences of those being discharged from mental health hospitals.

Around 50,000 people leave mental healthcare hospitals every year. However, a national survey from the mental health charity Mind, found that 40 per cent of those have no plan in place to support them after they leave.

Sarah Rae, a mental health service user, experienced difficulties when discharged from mental health wards in the past. She is now working alongside researchers from Norfolk and Suffolk NHS Foundation Trust (NSFT), two other NHS trusts and academics from six universities across the country – including Northumbria.

Determined to use her lived experience of two long-stay admissions to improve services for others, Sarah is co-leading the research along with Dr Jon Wilson, a Consultant Psychiatrist at NSFT. The team are working with mental health service users and carers to develop a new support package for discharge.

“This kind of co-produced research adds an extra dimension,” explained Dr Sonia Dalkin, Associate Professor of Applied Health Research from the Department of Social Work, Education and Community Wellbeing at Northumbria.

“Sarah is an active agent and partner in leading this research, with invaluable input in terms of lived experience, contextual conditions, and processes surrounding discharge planning approaches. Overall, improving the problem of poor discharge would improve the lives, safety and mental health recovery of significant numbers of service users.”

Dr Dalkin is working with Katie Haighton, a Professor of Public Health and Wellbeing at Northumbria, on the research. “We’ll firstly look at the evidence to identify what works, and doesn’t work, in current discharge planning approaches, and uncover why this is,” explained Professor Haighton. “This will help inform the design of a tangible aid for the discharge process.”

National Institute for Health and Care Excellence (NICE) guidelines state that discharge planning should include staff working together with service users. Mental health workers want to create a positive experience for those leaving hospital, however, there are many complicated factors that can disrupt this.

The idea is to develop and adopt an ‘Engineering Better Care’ toolkit which can be applied and adapted to the discharge process from the point of view of the people involved. This will include what people feel they need to stay well after leaving hospital.

Speaking about her own experience of leaving mental health hospitals, Sarah said: “I was terrified of going back into the community. This fear was made worse by the fact that staff did not try to understand my worries or offer any coping strategies. There was no collaborative discharge planning before leaving hospital. The knock-on effect on my wellbeing and recovery was huge.”

Other partners in the research include the University of Cambridge, Kings College London, University of East Anglia (UEA), Anglia Ruskin University, University of Hertfordshire, East London NHS Foundation Trust (ELFT) and Hertfordshire Partnership University NHS Foundation Trust (HPFT).

Further details on the MINDS study, or Co-producing improved mental health acute inpatient discharge using a systems approach, are available here.

The Department of Social Work, Education and Community Wellbeing at Northumbria University offers a diverse range of undergraduate and postgraduate programmes with a particular focus on high quality professional education, research and innovation across multiple disciplines.