MINDS study

The MINDS research project aims to improve discharge planning from the viewpoint of everyone involved, including people with lived experience, supporters and staff.

The first step is to explore people's experiences of discharge to understand what a good discharge is and what planning is needed  to achieve this, before all coming together to develop solutions. These solutions will then be tried out on a varietly of adult wards, where we will consider what works to make a more effective discharge for everyone.

The MINDS study has found that people and supporters are often not involved in discharge planning — and when they are, it is often not a collaborative or person-centred process. This results in people feeling that they have been discharged with very little notice and feeling psychologically, emotionally and practically unprepared for discharge.

We have found that beneficial discharge planning starts soon after admission and is  integrated with people's stay on the ward. This involves good sharing of information between healthcare professionals, service users and supporters. This rests on conditions that allow people to express their genuine needs safely. These needs should be attended to in a collaborative process of discharge planning, which balances these needs with safety. It is critical that staff work in a system that supports them to deliver a collaborative person-centred discharge planning process. This requires a supportive team with a mixture of professional skills that enables thinking through people’s individual needs and supports decision-making.

O ur researchers work together as partners, where everyone’s input is valued. We are a group of people with lived experience, supporters, expert academics and mental health professionals.This study is funded by the  National Institute for Health and Care Research (NIHR) over a period of 3 years. We will be working with three mental health trusts (Norfolk and Suffolk NHS Foundation Trust, East London NHS Foundation Trust, Hertfordshire Partnership University NHS Foundation Trust) serving both rural and inner city and representing diverse communities.

  The discharge process from a mental health ward can be complex and discharge planning takes place within a multi-layered system.   

 

 

 

 

In year 1, we reviewed published articles and literature and then interviewed a range of people with lived experience of discharge, supporters and staff on the wards. This helped us to understand discharge experiences and issues from key perspectives across the mental healthcare system.

In Year 2, using the Engineering Better Care approach (https://cebc.eng.cam.ac.uk/), we ran 8 workshops with key stakeholders (people with lived experience, their supporters, and healthcare professionals). We have co-designed  a number of  solutions, and, from these, we have co-developed the Onwards Approach. 

We hope this will help us to make changes in practice, in a way that allows staff to work flexibly in the way that they want to, and ensures people with lived experience feel heard and acted upon – so everyone involved benefits.

 

The MINDS STudy Timeline 

Want to know more? Please see below for more detailed information

Understanding lived experience is central to the MINDS project.

Sarah Rae (co-lead) initiated the MINDS project based on her own difficult experience of discharge.  Sarah established the initial research team and then worked with team members to design the project and bring more experts on board to support the delivery of the research. 

The MINDS project includes a diverse Lived Experience Advisory Group (LEAG) of partners. The LEAG is made up of people who either have experience, or supported someone who has experienced, discharge from a mental health hospital.  

As part of MINDS, we have developed a vision and mission statement, and also a set of values:

Our vision

To bring together people with lived, learned, clinical, and research expertise, to improve discharge experiences for all from mental health wards.

Our mission

At MINDS, we aim to promote a collaborative research culture where power is shared. Our objective is to share learning and understanding to improve the discharge processes on the ward.

 Our values:

• Reciprocal relationships: We are creating a culture in which everyone involved feels valued and respected.
• Sharing power within decision making: Co-production within MINDS involves equal partnerships between those who have lived experience of accessing inpatient services or carers/supporters, and those who have clinical and/or research expertise.
• Create and share knowledge: Everyone is meaningfully involved throughout the entire research process, from development, to the sharing of findings.

 

Thinking about co-production within MINDS

 Within MINDS, we aim to hold ourselves accountable to our own co-production values. Everyone in the wider team and the LEAG is invited to complete an anonymous survey every three months to ensure we are keeping to our standards of co-production.

Here are some quotes from our team members from the MINDS co-production survey: 

We have developed a systemic approach to discharge planning called the ‘Onwards Approach’. This is made up of six inter-connected components.

The image below describes these six components as:

• Supportive practice
• Onwards supporter planner
• Onwards planner
• Gradual leave
• Onwards postcards
• Mini teams

Please watch the animations in the ‘What is the Onwards Approach?’ section for more information about each part.

Onwards Planner

The Onwards Planner is owned by service users. The aim of the planner is to facilitate service users and staff working together to support people from admission to moving on from the ward. Both service users and staff might find it helpful to watch the animation below to support them with using the Onwards Planner.

Onwards Supporter Planner

The Onwards Supporter Planner is owned by carers/supporters of service users. This planner aims to include supporters throughout their service user’s time on the ward and beyond. Supporters can watch the animation below to further understand how the Onwards Supporter Planner can be used.

Supportive Practice

Supportive practice is a session for staff to meet and create a space where they can openly talk about their work on the ward, including any difficulties they may be facing. The sessions have a particular focus on discharge. Materials for discussion are provided, and there will also be the chance for staff to bring their own cases. Staff can watch the animation below to find out more about Supportive Practice sessions.  

Mini teams

Mini teams are a way of rearranging ward staff into smaller groups, to make sure that there is always a known member of staff available on the ward for service users to talk to. Mini teams should also help staff with shared decision making. Service users, staff, and supporters can watch the animation below to find out more about mini teams.

Gradual leave

We know that leave can be an important part of the journey towards moving off the ward, and that the way in which leave is used is also important. Watch the animation below to understand more about this.

Onwards Postcards

Onwards postcards are available on the ward for people to send to mark the end of their time in hospital, and recognise the relationships they have formed on the ward. Service users, supporters, and staff can watch the animation below to understand more about these and how they can be used.  

In Year one, we combined findings from our research and decided on top priorities, or requirements. These are the requirements for a good discharge:

1.      Discharge discussion s happen in a timely manner, according to need, and as part of life on the ward
2.      Discharge planning is collaborative
3.      Relevant information between staff, service users, and supporters is shared 
4.      Everyone (service-users, carers, ward staff, external people impacted by discharge) is able to express their needs
5.      Discharge planning balances needs and safety (practical, physical, psychological, and institutional dependence)
6.      People are psychologically and emotionally ready to leave the ward
7.      The working environment for staff is supportive and safe

The different parts of the Onwards Approach address each of these seven requirements. The diagram below shows how these requirements are connected to each part of the Onwards Approach.

   

We are now in year three of the MINDS study (beginning February to March 2024). We will be introducing the Onwards Approach and working with staff on our six study wards to see how it works in practice and whether it is helpful. The Onwards Approach will be used as part of normal practice on these wards.

The Onwards Approach is designed to meet the requirements for a good discharge, via discharge planning. It is a holistic approach, meaning that it is not just the components themselves, but also the way they work together, that is important. The Onwards Approach is designed to adapt and flex to the needs of the ward and people in the ward. In year three, we are keen to find out how it is adapted and put into practice on the wards, and how this impacts the service user, supporter and staff experience of the approach. 

Listen to our podcast episode

This podcast discusses the co-design and set up of this co-produced MINDS study.

Podcast Link

Watch Sarah and Jon’s research presentation

This video shows Sarah and Jon talking about the MINDS study at a research seminar at Cambridgeshire and Peterborough NHS Foundation Trust.

Presentation Link

Read the Northumbria University Article about MINDS

Northumbria Article Link  

Read more details about the MINDS research study on the National Institute of Health and Care Research (NIHR) website

NIHR Link

 

Sarah Rae - Co-lead of the MINDS Study

I had a poor experience of care as a mental health inpatient several years ago. Transitioning to the community was especially distressing  after becoming institutionalised during my eight-month ward stay. The prospect of becoming responsible for four children again terrified me, but no one understood this. Since then, I have been involved in research that aims to change service delivery and practice on the ground for the better. If the MINDS study leads to improved discharge planning that benefits everyone, I will feel my job is done. The children have long since fledged the nest, but when I am not beavering away at this project my elderly cat, who needs much tender loving care, is a calming influence and my granddaughter makes life fun.

 

Jon Wilson - Co-lead of the MINDS Study 

Dr Jon Wilson is a consultant psychiatrist, consultant medical psychotherapist and Research Director in Norfolk and Suffolk NHS  Foundation Trust. He trained in medicine at St Andrews and Manchester before completing his psychiatry training in far flung places like New Zealand, Edinburgh and Cambridge. He leads a number of National research grants and has particular experience   of service design; especially young people’s mental health services and systems of care. He is particularly interested in research   which is developed by and involves people that use services and makes a tangible difference to their care.

 

 

Corinna Hackmann – Research Clinical Psychologist

Corinna is a Research Clinical Psychologist and leads on Research Development for Adult services at NSFT. I am interested in research that improves mental health services for those who use and work in them – and has coproduction at its heart. I am co-leading Work Package 2 for the MINDS project.

 

 

 

Lisa Grunwald – MINDS Study Manager (Currently on maternity leave)

Lisa is the MINDS study manager, and responsible for the day-to-day running of the study. She is about to complete her PhD at  the Division of Psychiatry at UCL. She has been working in NHS services, including inpatient wards, community teams and outpatient psychology departments. Having worked in mental health services, she has developed a keen interest in research, especially service development and improvement.

 

 

Charlotte Wheeler – MINDS Study Manager

I'm currently the Study Manager for MINDS. I play a supporting role in recruiting participants for the study, analysing and writing up our findings and working with the different study sites to make sure everything runs smoothly. I love that MINDS is such a unique project with coproduction at its heart and an ability to bring together such different people, ideas, and ways of working. Outside of MINDS, I enjoy cooking, reading, and spending time in nature.

 

 

 

Emma Grindrod – Research Assistant Psychologist (ELFT)

I’m a Research Assistant at East London Foundation Trust. I help with the day-to-day activities of MINDS, which includes a lot of   admin, data collection, and data management. I’ve been working in the NHS for eight years, and I’ve seen the negative impact of   poor service design and delivery on everyone. I want to be part of understanding and changing systems, so I am very pleased to support MINDS, and I hope to learn about inclusive systems engineering. In my spare time, I like going to live shows and gigs, spending time in the parks in London, and watching documentaries.

 

 

Tara Self – Research Assistant Psychologist (HPFT)

I’m one of the Research Assistants working on MINDS for the Hertfordshire Partnership University NHS Foundation Trust (HPFT) site. I support with various parts of the research such as recruiting participants to the study, developing materials and data analysis. Outside of the project, I enjoy spending time socialising with friends, exploring new places and watching live sports.

 

 

 

                                                                                                      Work Package 1

Sonia Dalkin

My interest in the MINDS study stems from my research background in applied health and social care research and my interest in using realist approaches to further understand such services and interventions, allowing for improvement where possible. In my spare time I like to do yoga and enjoy cooking.

 

 

 

Melanie Handley

Melanie Handley is a Senior Research Fellow at the University of Hertfordshire. Her recent research focuses on the delivery of health and care services for people living with dementia using realist and co-design methods. Melanie is interested in understanding the factors that influence discharge preparation and planning to help inform how it might work better for people staying and working on the wards.

 

 

 

 

Emma Kaminskiy 

I am an Associate Professor in Psychology at Anglia Ruskin University. I have previous experience of working collaboratively with NHS Trusts on research and service improvement projects. I am dedicated to meaningful public and patient involvement in research, working with people with lived experience and carers to understand what is important and to improve mental health services. Working closely with service users and carers has shown me how valuable service user and carer involvement is in developing and redesigning healthcare services.

 

 

Hannah Zeilig

Hannah Zeilig is a Reader in Arts and Health at the University of the Arts, London. During the ongoing covid-19 pandemic she worked with people living with dementia in care homes and with artists and has researched the arts and dementia in her role as senior research fellow at Wellcome. She lives with bipolar 1 disorder and is motivated to query and challenge accepted norms about mental illness and the treatment of people who live with this range of conditions.

                                                                                                       

                                                                           Work Package 2

Amanda Green

As Peer Support Lead I am proud to lead our extraordinary peer support workforce at NSFT using our lived experiences to help   deliver and transform services. An important part of my recovery journey was studying for my Masters in Mental health Recovery   and Social Inclusion, where I fell in love with academia, which is why I now find myself researching Safety Planning: a recovery—   orientated risk management intervention for my PhD at King’s College London. My interest in MINDS project, therefore, is two-fold;   firstly, any excuse to be involved in research should be taken, and secondly, as someone who spent almost a decade in and out of   psychiatric wards, I am keen that people experiences of discharge from wards are facilitative of the next phase of their recovery – whatever that may be. 

Sam Waller

My role is to apply the Improving Improvement toolkit (https://www.iitoolkit.com/) and Engineering Better Care   (https://raeng.org.uk/media/wwko2fs4/final-report-engineering-better-care-version-for-website.pdf) approach within the MINDS   research. I am particular interested in MINDS because the consortium contains a mix of clinicians, researchers, and people with lived experience of the process. My personal interests are kayaking and mountain biking.

 

 

Timos Kipouros

I have a Systems Engineering background and I am working with the Aerospace industry for more than 20 years. I have developed   a strong interest on healthcare systems, simply because of the additional complexity of capturing patient and human behaviour   and consider this as input to engineering practices. In the MINDS project, I am excited about the potential solutions we might discover, simply because these will be co-produced directly with service users, carers, and engineers. My role in MINDS is to   coordinate the workshops of co-design and co-production with my colleagues.

 

 

 

                                                                                         Work Package 3

Jamie Murdoch

I am a Senior Lecturer in Social Science and Health in the School of Life Course and Population Sciences, King’s College London. I am co-leading the evaluation of the MINDS discharge care approach, focusing on how it is implemented and experienced within   Mental Health Trusts. In my free time I enjoy spending time with my family and friends, running and when I have the time, trekking   in the mountains.

 

 

Adam Wagner

Alongside other members of the team, I co-lead the third part of MINDS, which is looking to understand early evidence around the   acceptability, implementation and cost impact of the intervention (the SDA) being developed in MINDS. As a health economist, my interest is in understanding the resources, associated costs and benefits of different treatment and service alternatives. Therefore, within MINDS, I want to understand the resources and costs of delivering the SDA, and how these impact the wards in which it would be delivered and wider contexts. A good deal of my research focuses on mental health, and having worked Sarah previously   on the PROMISE study, I was interested in being involved in this study. It was also a new opportunity to be involved in the   development of a new intervention, which contrasts to most of my work which focuses on the later stages of evaluating   interventions. Outside of research, Adam can often be found trying to improve his skills on a badminton court or escaping into                              some science fiction.

Sophie Bagge

Dr Sophie Bagge is a Senior People Participation Lead at Norfolk and Suffolk NHS Foundation Trust and is motivated to enable all people who use services and their loved ones to be equal partners in the design and development of mental health services. Sophie has previously completed her doctorate at the University of East Anglia.  The title of her doctorate is: A Journey from Science to Art:  Valuing the voices of women in the exploration of traumatic childbirth and perinatal mental health.  Sophie lives with bipolar disorder and is passionate about utilising both her lived and learned knowledge to improve the experiences of people with mental illness.

 

If you want to find out more about the study, or want to be involved, email us at minds@nsft.nhs.uk .