A Life Less Safe: telling the real stories of health inequities through research and film
Two new studies and an accompanying short film have described the experiences of racially minoritised groups with physical and mental health conditions during the pandemic, depicting the inequalities they faced and continue to face.
Panel discussion at screening of A Life Less Safe
The new research and film were part of theCOVID-19 Ethnic Inequalities in Mental health and Multimorbidities (COVE-IMM) project which has explored whether COVID‐19 exacerbated ethnic health inequalities in adults with serious mental and physical health conditions. The COVE-IMM project was funded by The Health Foundation and was a partnership between King’s College London, University of Sussex and Black Thrive.
COVE-IMM was a mixed methods project, combining quantitative research led by Professor Jayati Das-Munshi and qualitative research led by Dr Josephine Ocloo, both from King’s College London. It was conducted with a wider team of experts by occupation and experience that formed the basis of the film ‘A Life Less Safe’.
Two research papers from the COVE-IMM project were published in October around the same time as the screening of the short film ‘‘A Life Less Safe’:. The film was based on the insights from the qualitative study which interviewed 32 participants and was published in BMC Psychology. The quantitative study, published the week after the screening in Psychological Medicine, used data from electronic health records.
A Life Less Safe screening in Brixton
The short film ‘A Life Less Safe’ was made by BAFTA awarded filmmaker Andy Mundy-Castle from Doc Hearts, and features researchers and research participants sharing insights and experiences which were captured as part of the project. The film was screened to a full house at the Ritzy cinema, Brixton on World Mental Health Day on 10 October 2024 and as part of Black History Month. The event was supported by the ESRC Centre for Society and Mental Health and the NIHR Applied Research Collaboration South London.
After the screening there was a panel discussion chaired by Dr Lade Smith CBE, President of the Royal College of Psychiatrists. On the panel were researchers on the project Professor Jayati Das Munshi and Dr Josephine Ocloo, film-maker Andy Mundy-Castle, study participant Tamanna Miah and Dr Jacqui Dyer who chairs NHS Patient and Carer Race Equality Framework (PCREF) and the NHS England Mental Health Equalities Taskforce.
We must engage with our communities in dialogue and support mental health and physical health initiatives and advocate for policies and procedures that address these systematic racial inequalities and discrimination that we have at the highest levels. We need to create a future where every community is celebrated, supported and valued
Tamanna Miah, Public speaker, presenter, lived experienced researcher, panelist and film contributor.
Central to the COVE-IMM project’s approach was a collaboration with individuals involved in the Patient and Carer Race Equality Framework (PCREF) initiative working in the three pilot sites in the study, including South London and Maudsley NHS Foundation Trust. The Patient and Carer Race Equality Framework (PCREF) is an anti-racism framework which is being implemented in England, through NHS England, and which seeks to directly tackle race inequalities in mental health. Members of the local PCREF were in the audience for the screening. Brixton-based charity Mosaic Clubhouse project was integral to the research and representatives from the project were at the screening to support those who may have found the film upsetting or triggering.
It's a systematic approach that we need to take, which is why the Patient and Carer Race Equality Framework is so important. Essentially, it's an anti-racism framework. It's the first anti-racism framework from the NHS. It's mandatory across the country, wherever the public purse is spent on mental health. And the patient and carer voices are central to any improvement, transformation or innovation in relation to responding to our needs as racialised bodies when we have mental health challenges.
Dr Jacqui Dyer, panellist and chair of NHS Patient and Carer Race Equality Framework (PCREF)
Panelists at A Life Less Safe
The project will hopefully go on further to raise awareness. The film reverberated in the room that evening and we think it will have an impact when people see this insightful film. PCREF are so important for the future and I’m glad and empowered that people from ethnically minoritized groups are being heard.
Dina, Peer Researcher, COVE-IMM project and co-author on qualitative study.
Describing experiences with qualitative research
The qualitative study published in BMC Public Health interviewed 32 service users and carers of Black African, Black Caribbean, Indian, Pakistani or Bangladeshi descent and two community groups. These interviews revealed multiple places and processes along health and care pathways that have the potential to exacerbate the unjust health gap in mortality that exists for Black and Asian people with serious mental illness (SMI).
Half of the participants described safety issues in their care. This stemmed from a number of problems such as lack of access to care, lack of follow up and support, being treated unfairly and experiencing racism. Community organisations were perceived to have played an important supporting role during the pandemic and participants reported receiving help from a range of places, such as mental health charities and churches, and through adult education, exercise classes and music therapy groups.
An overarching theme that came out of the study was the way that past and/or ongoing experiences of racism, coupled with poor practice in mental health or healthcare generally, or with other institutions in society, were leading not only to mental health traumas, but to a deep distrust in wider systems and organisations and a sense of powerlessness. This was echoed by community organisation representatives.
Dr Josephine Ocloo, lead author of the paper on qualitative interviews and Senior Research Fellow at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London.
The qualitative study highlighted several factors that shaped inequalities. These included timely access to care, being treated in a culturally appropriate manner with empathy, dignity and respect and being able to use services without experiencing coercive and undue force, racism or other forms of intersectional discrimination. Just under half of the service users interviewed raised explicit issues to do with racism and intersectional experiences of discrimination, occurring in the wider society, which had impacted their mental health negatively, as well as unfairness in mental health care and treatment.
It’s not just an ethnicity thing, but important for someone to be able to relate to you as you are with your background, as a Black man, regardless of if they are White or Black; they need to be able to relate to you in terms of who you are and your cultural reference points. Those things are clearly important.
Participant on the qualitative study
Central to the qualitative research and reflected in the film was the involvement of people with lived experience throughout the project. Lived experience peer researchers were recruited through community partnership with Black Thrive, Mosaic Clubhouse and Ashiana community organisations. Peer researchers then worked together with university researchers to conduct semi-structured telephone/online interviews, and to code and analyse all of the qualitative data. They were also authors on the study.
It's been fantastic to be involved in a project of this nature - incorporating my Lived Experience and shining a llght on the difficulties faced by people with various mental illnesses during the pandemic - and to see this to be published as a report, a research paper and indeed a documentary film that was shown to the general public at the Ritzy Cinema in Brixton. I hope this will be the beginnings of changes within the mental health system in terms of care!!!
Leroy, Peer Researcher COVE-IMM study and co-author on qualitative study
Data supporting the experiences
The quantitative study analysed electronic health records across the UK from secondary mental healthcare from 2007 to 2021 to explore long-term trends in the risk of death of people with severe mental illness, such as schizophrenia and bipolar disorders.
Published in Psychological Medicine, the research analysed records from 22,361 people which showed that prior to the COVID-19 pandemic, people with severe mental health conditions were already twice as likely to die from any cause compared to the general population. After the pandemic started in 2020, mortality risk increased further.
Compared to prior to the pandemic, Black Caribbean and Black African people living with severe mental health conditions had a higher risk of death from any cause during 2020 to 2021, the first year of the COVID-19 pandemic.
The findings suggest that people living with certain combinations of conditions, for example schizophrenia with dementia or schizophrenia with intellectual disabilities, were at a substantially higher risk of death from COVID-19 during the early phases of the pandemic, compared to people living with schizophrenia alone.
We're now out of the pandemic. Here we are in the room altogether. But the question is, what can we do about this? How are we going to stop having to tell the same story? That's why I think approaches like the Patient, Carer and Race Equality Framework have the potential to really change the conversation.
Professor Jayati Das-Munshi, Professor of Social & Psychiatric Epidemiology at the IoPPN, King’s College London
The film ‘A Life Less Safe’ and the research findings have provided powerful and valuable insights and messages about the health inequalities faced by ethnic minority groups which can help inform the work of PCREF and raise awareness about the issues raised in the film and the research.
