First service user-led research project for NSFT
Sarah Rae, a mental health service user has brought together a nationally recognised team of researchers to develop a major new research study. The NIHR funded study called MINDS aims to improve the outcomes and experiences of those being discharged from mental health hospitals.
Sarah has experienced difficulties when discharged from mental health wards in the past. She will now work alongside researchers at Norfolk and Suffolk NHS Foundation Trust (NSFT) on this one-million-pound study. Sarah is determined to use her lived experience to improve services. She will co-lead the research.
“I have had two long stay admissions. On the first occasion I was discharged at very short notice. During a more recent admission I became institutionalised after spending 8 months on the ward. 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 well-being and recovery was huge.
When I approached Corinna Hackmann and Jon Wilson at NSFT research they were both enthusiastic about my idea for a research project. They regarded my lived experience to be of equal value to their academic skills. We had a shared vision from the outset. They recognised how service users could benefit from research into how discharge processes could be improved.”
Sarah Rae, Co-lead on MINDS
Around 50,000 people leave mental healthcare hospitals every year. However, a national survey from the mental health charity Mind found that 40% of people leaving mental health hospitals have no plan in place to support them after they leave.
The research team, including leading academics from across the UK, will work with mental health service users and carers to develop a new support package for discharge. This is thanks to funding from the National Institute for Health Research (NIHR).
“No care plan, no follow up. I came out last week, again no care plan, no medication,” Service User
Dr Corinna Hackmann, co-investigator on the MINDS project said, “National Institute for Health and Care Excellence (NICE) guidelines state that discharge planning should include staff working together with service users.
"We know that mental health workers want to create a positive experience for those leaving hospital. However there are many complicated factors that can disrupt this. The aim of MINDS is to combine:
- the expertise of people who have accessed mental health services
- clinicians
- researchers
- engineers
- commissioners
- and managers
to develop solutions.”
“The cutting-edge part of this research is the work we are doing with health care systems engineers at the University of Cambridge. We plan to make a tangible ‘aid’ to help in the discharge process”, explained joint-lead on MINDS Consultant Psychiatrist, Jon Wilson.
"The idea is to adopt industry tools to understand and adapt the discharge process from the point of view of the people involved. This will include why discharges are sometimes not well planned and what people feel they need to stay well after leaving hospital. This ‘Engineering Better Care’ toolkit can be tailored to different situations.
“We are delighted that this systems approach, co-developed with:
- systems engineers
- health and care professionals
- improvement experts
- and patient representatives
can be applied to an important systems challenge such as discharge in mental health,” Professor John Clarkson, Director of the Cambridge Engineering Design Centre at the University of Cambridge
For more information and to register to take part visit the MINDS study page.