*Lindsay Riddoch’s art
Fiona Riddoch & Jennie Parker
Words That Carry On co-founder Fiona Riddoch and Jennie Parker, co-principal investigator on a new City University of London project, outline how to include lived experience in research that backs mental health policy decisions and why it is important. The City research project is an exciting opportunity for anyone interested in this approach.
A simple concept for effective solutions: Nothing About Us Without Us
‘Nothing About Us Without Us’ is a phrase that became prominent in the 1500s in Poland as the country took its first steps away from absolute monarchy and towards a parliamentary system. It encapsulates the idea that no policy, such as policy governing provision of mental health services, should be developed without the voices of those it will directly or indirectly impact.
This demand is just as applicable to public policy today. It’s encouraging to see the new NHS Community Framework for Adults and Older Adults advocating co-production of services as a core part of its long-term plan.
“Adding lived experience to a team…brings a new validity to the work by making these findings relevant and applicable.”
It’s such a simple concept: include people affected by policy in developing the evidence-base for new or modified strategies, as this should lead to more sustainable and meaningful change. The fundamental point is to integrate the knowledge and understanding of people with relevant lived experience of specific mental health needs as the experts in the research, design and implementation of policy and services.
This is the principle that underpins our work at Words That Carry On: a fund in memory of Lindsay Riddoch that invests in vital research on complex mental health needs, so that policies and services can be developed that better serve people.
The fund puts research which listens to and acts upon the expertise of people with lived experience at the heart of the work it supports.
Bringing nuance to decision-making
Co-producing policy and services with researchers and non-researchers who have lived experience requires a ground-up rather than top-down analysis. Through research which seeks to understand the experiences of people, and the language they use to describe themselves, we can change the assumptions made about their day-to-day experience of the world.
The research questions are also therefore less likely to be misinterpreted and more likely to be welcomed where the language acknowledges and reflects the world of the research participants. This can make the difference between effective qualitative research interviews and ambiguous or biased results.
Adding lived experience to a team broadens the critical perspectives that can be brought to bear on research findings, suggesting and testing interpretations. It brings a new validity to the work by making these findings relevant and applicable.
Ground-up research in practice
A good example of how the approach can be applied in original research is the work of City University of London’s team, investigating why autism may be missed or misdiagnosed in some people diagnosed with ‘personality disorder’. The project brief stemmed from questions raised within what is now termed the ‘Complex Emotional Needs (CEN)’ community.
As the research topic crystalised, increasing involvement of the autistic community was sought to build the team and include their perspectives. The team is made up of a majority of research professionals who themselves have relevant lived experience of either autism or CEN.
This core research team is supported by an independent advisory group drawn from the CEN and autism communities, who were intrinsic to the Words That Carry On/McPin scoping exercise for developing the research brief.
The core team is also backed by a clinical advisory group of a psychiatrist, a psychologist and other practitioners and specialists in autism and/or CEN.
“The project is running at a time of significant change for how mental health support is to be provided for adults in the UK.”
The range of experience and expertise surrounding the project made co-developing the research proposal a larger and more complex task than anticipated for a project of its size. Time was spent discussing the priorities for the research from different perspectives, and then clarifying the core objectives for the work.
The breadth of these has resulted in a thorough and critical analysis of the topic, delivering an approach with benefits for both communities. The result is a robust project design based on a critical diversity of thinking.
The project is running at a time of significant change for how mental health support is to be provided for adults in the UK. The Community Mental Health Framework has incorporated lived experience into its structure and pilot stages. It will fully launch nationwide in 2023/2024 at the same time as the findings of the City project will become available. We look forward to them supporting each other.
Apply for the studentship
The studentship starts in October 2021 and interested applicants can read move about the opportunity here. The team will be delighted to hear from all potential candidates and encourage PhD candidates with lived experience of a personality disorder diagnosis, complex mental health needs and autism to apply.
The studentships will be awarded on the basis of outstanding academic achievement and the potential to produce cutting edge-research. The closing date for applications is 30th April 2021, with interviews held on 24th May 2021, and start date 1st October 2021.
Take a look at the website for more information, or email Kirsten Barnicot for informal enquiries. We look forward to reading your application.
Fiona Riddoch is co-founder of Words That Carry On and Lindsay Riddoch’s mother.
Jennie Parker, a lived experience researcher (personality disorder and autism), is joint Principal Investigator with Dr Kirsten Barnicot in the Doctoral Studentship on ‘Autism and Personality Disorder: Improving Recognition of Autism’, at City, University of London, starting October 2021.
