The Mental Health and Justice project – funded by a WT Collaborative award and a WT public and patient engagement (PPE) award – is coming toward its end. The project has been an extraordinarily intense and fascinating one which has followed a path laid down in our original project proposal of 2016 but has also had to react to external events unforeseen then. Unforeseen events have fundamentally shaped our work including reform of mental health legislation in the several jurisdictions of the UK, the Black Lives Matter (BLM) movement and the Covid-19 pandemic. As such we have been stretched across multiple dimensions and challenged. In 2022 the very terms ‘mental health’ and ‘justice’ do not have quite the same meanings that they had in 2016. Both terms have become more culturally and politically salient.
After 5 years of work by the Academic Management Group we find it helpful to return to the original strategic outcomes of the project and review what we have achieved and what we wish to do in the final ‘dissemination phase’ that Wellcome have agreed on a no cost extension until Sept 8th 2022.
In 2016 we identified 4 themes reflecting the outcomes we sought over the lifespan of the project.
- Advancement of interdisciplinary working
- Policy engagement
- Practical guidelines and quality improvement
- Innovation in service user-involvement in research and public engagement
Advancement of interdisciplinary working.
In 2016 we wrote: ‘We will combine methods and knowledge of disciplines in order to create new syntheses that solve problems, give insight, create impact and produce outcomes that would not be possible within only one discipline. We will also achieve a creative ‘confrontation’ of disciplines, e.g. law will be challenged by anthropology and neuroscience; philosophy of mind will be challenged by psychiatry. We will leave a legacy of excellence in interdisciplinary working and a model for the international research community’.
MHJ began as a big tent meeting at the Wellcome Collection in 2016 exploring broad questions about empowerment and protection in mental health. It evolved to establish 6 research workstreams, each with their own set of questions and objectives bearing on empowerment and protection and each with their own identity. Importantly, interdisciplinarity and intersectoral working has been tailored to address the key questions of each workstream, producing a varied emphases on different disciplines. So, for example, in workstream 2 on community participation, international ethnography and participatory action research has been a primary approach; whereas in workstream 5 on metacognition, cognitive neurosciences have been primary. However, all workstreams have deployed mixed methods, qualitative and quantitative, combined with philosophical and legal analyses. Rich disciplinary exchanges, with the conceptual pluralism that this lends, has characterised every workstream. Our project website gives details of all 6 workstreams with their team compositions, work, and outputs so we won’t replicate here.
A critical marker of interdisciplinary advancement is research publications, and our project website details these in a variety of modes (e.g. by workstream, by year). Something we wish to highlight is that most of our publications have been interdisciplinary in a radical sense. By this we mean that they have crossed large discipline boundaries (health, social and cognitive neurosciences, philosophy and law) and have engaged with academic literatures across those disciplines.
The program produced several examples of this where there was an interactive and mutually enhancing series of inter-disciplinary studies. By way of illustration, researchers within workstream 5 began by exploring how neuroscientific work was currently being used within the court system to illuminate capacity cases. The answer was ‘not very much’. So we undertook to develop a user-friendly method for quantifying a person’s confidence in their perceptual and memory abilities (the essence of metacognition) while statistically controlling for their actual ability using a gamified computer task. We then piloted the use of the task in healthy older adults and those with dementia. Performance on this test was then compared with a standard clinical interview aimed at determining financial decision-making capacity. Hence a circle joining the law, cognitive science, clinical assessment, and back again was completed.
Cross discipline co-authorships have been involved and journal editors have sometimes been pushed out of their comfort zones by the conceptual and methodological issues raised (this issue being a subject of reflection in a recent MHJ Colloquium). One marker of advancement has been acceptance of our original research papers in well-known single discipline-based research journals in health, social, cognitive neurosciences, philosophy and law. So, for example, we have seen publications in The Lancet journals; The British Journal of Psychiatry; Culture Medicine and Psychiatry; Journal of Experimental Psychology; The Journal of Medical Ethics; Philosophical Psychology; Medical Law Review. An MHJ Special Issue in the multidisciplinary International Journal of Law and Psychiatry, alongside publications in multidisciplinary, open access journals such as Wellcome Open Research and PLOS One, have also been very important for us to get longer publications out. Impact has been notable with a research impact case study on the Mental Health Act aspiring to a 4* grade for the UKRI’s Research Exercise Framework 2021.
The ‘big tent’ or whole MHJ project has been a challenge to define and, in the cross winds which have affected the project, to keep pitched. We have used a variety of approaches to sustain a big tent approach to our overarching question and to keep 6 workstreams and 3 partnerships whole and more than the sum of parts. Specifically, our approach has included intensive whole-project colloquia at the Wellcome Collection. These were planned carefully and held annually bringing together our whole collaboration of 60+ people consisting of researchers, community organisers and people with lived experience. We also used smaller specific symposia (e.g. on MHJ and the varieties of justice; MHJ and neuroscience) to probe and test our understandings. Ad hoc seminars, creative confrontations and methodological exchanges between workstreams and researchers were also important to us.
A marker of the success of these approaches was that our colloquia expanded in sequential years (45 people in the first year to 60 in the last) with innovations in presentations and deep dive explorations in person and, due to the pandemic, online. The project’s academic management group (40 meetings) was always quorate and there has been a desire for creative confrontations and exchanges sometimes exceeding the collective capacity of our diaries! A clear consensus from the academic management group emerged to extend into a dissemination and legacy building phase following completion of our workstream research. Last but certainly not least, a positive marker of interdisciplinary advancement has been an early career group who have developed an informal research culture of support meetings and presentations in a ‘bottom up’ fashion. This has, in an important sense, generated a cohort of young researchers who have grown up with interdisciplinarity as ‘their’ research culture whilst also being integrated in workstream research programmes. We are curious to learn how they carry their interdisciplinary learning through into their academic and non-academic careers when we report again in 2 year’s time.
Because there are few blueprints for complex collaborative research processes, and out of a sense of curiosity in them, we decided quite early in the project to devote time to reflective practice. Our learning on collaborative processes (‘warts and all’) with practical suggestions for the configuration of complex collaborations will form the topic for a separate report and will be available shortly.
In 2016 we wrote: ‘Through the King’s Policy Institute we will strengthen engagement and maximise policy impact of our research. We will develop the potential of our network to shape debates for the next decade.’
Soon after the start of the MHJ project the then Prime Minister announced an independent review of the Mental Health Act with Professor Sir Simon Wessely at KCL as its chair. An unexpected opportunity arose for MHJ to inform a law reform process. We pivoted to this opportunity using our partnership with the King’s Policy Institute and a methodology they were developing called ‘policy labs’. Policy labs aim to narrow the gap between evidence and policy making using collaborative sessions that bring together research, policy, practitioner, and service user expertise to assess the evidence, understand barriers and constraints to change and use this understanding to inform policy options that can help improve outcomes. We sought to draw out a wide range of perspectives and views to ensure that options and ideas were challenged and deliberated. We held a series of policy labs on the future of the Mental Health Act which helped provide a roadmap for change. These are summarised in the Policy Institute report here which was cited as influential in the final report of the Independent Review of the Mental Health Act.
The UK government has followed up on one set of recommendations on advance choice documents which the MHJ project has substantially engaged in. Following a MHJ/Policy Institute Westminster event on advance choice documents, several MHJ researchers became expert advisers for the Department of Health and Social Care in this area. This engagement is ongoing as government plans legislative reform.
Meanwhile, in 2019 the Scottish government announced its own reform of Mental Health Law with an expert group chaired by John Scott QC. MHJ moved early on to engage with these processes and research collaboration has been achieved with the Mental Welfare Commission for Scotland on the topic of ‘insight’ and ‘significantly impaired decision-making ability’ and with the Scottish Expert Review team on a range of issues across social rights, mental capacity and advance decision making using a combination of whole project meetings and a recent policy lab on ‘uncertainty’ in mental health law.
Further afield MHJ is being acknowledged in countries undergoing mental health law reform such as the Republic of Ireland and New Zealand. Team members have worked to produce a report, commissioned by the Human Rights Division of the Supreme Court of Mexico, on the principle of respect for the will of disabled persons. MHJ research has been cited in the UN General Assembly Report “Right of everyone to the enjoyment of the highest attainable standard of physical and mental health” to call for a new human-rights based approach to mental health care.
Much work is ongoing, with timelines affected by the pandemic, and we believe there are clear signs of a potential for our network to shape policy debates for the next decade.
Practical guidelines and quality improvement
In 2016 we wrote: ‘Guidelines on supported decision-making and assessment of decision-making abilities for practitioners, service users and carers will be developed; dissemination and impact will be facilitated through our strong relationships with international and national governmental bodies, professional organisations and service user and support groups.’
Some of our workstreams had explicit aims to develop guidelines and achieve quality improvement. We are therefore pleased to report on these.
- Research informed, practical guidance for clinicians and social workers on assessment of mental capacity has been completed. Though this has been mainly a workstream 6 output it has benefitted hugely from cross workstream collaboration. We decided to develop this guidance as an accessible website using a hyperlink structure to bring the multi-faceted nature of capacity assessment alive and to link with research and legal cases using a revisable platform. The guidance is available here.
- Research informed, practical guidance for advance decision making in Bipolar. These include detailed materials for clinicians and service users open access here. A version developed for the charity Bipolar UK is available here. More generic guidance materials tailored to the needs of the South London and Maudsley NHS Foundation Trust, NHSX and the Royal College of Psychiatrists is undergoing final stages of a PDSA (quality improvement) cycle and we look forward to reporting on this in 2 years time.
- Guidance for national and international users aiming to realise social integration
Innovative training materials for health professionals and social workers in Palestine and Ghana. A mental health and psychosocial support directory was produced for the West Bank (soon to be uploaded on the MHJ project website) while a social support directory is in press for the context of Ghana. Further, training courses for research methods were developed for health and social care providers in order to empower them to investigate pressing issues in the field of mental health and justice under extraordinary challenging circumstances.
- Guidance on the preparation and adjudication of evidence concerning patient insight forms the core of a CPD curriculum that has been delivered to medical, social care and legal professionals.
Further guidance on, for example, supporting contraception decisions produced with a learning disability charity ’Supported Loving’ is also expected as the project comes to its close in September.
Innovation in service user-involvement in research and public engagement.
In 2016 we wrote: ‘Through the integration of the McPin Foundation we will demonstrate the added value of service-user involvement in the creation of knowledge and impact in this area. Moreover, the Bethlem Gallery and Museum of the Mind’s artistic involvement with the research network will provide a ‘third space’ for the collaboration. Through a dynamic process of art production, travelling interactive exhibits, salons and social media activities, the Bethlem Gallery will foster innovative public engagement, supporting our aims of achieving balance, resolving tension and effecting positive change.’
MHJ set up a 10-person service user advisory group in partnership with the McPin Foundation in 2017, including both a representative from the McPin Foundation and an MHJ researcher as Co-Chairs. The group has advised on research activities across all workstreams with researchers presenting to the group and bringing a range of questions from research protocols and research ethics applications to feedback on theoretical papers, stress-testing recommendations for guidance and templates for clinical use, comments on software development or interpretations of data. It is also undertaking its own research via the qualitative analysis of data collected from MHJ researchers relating to the concrete differences which interactions with the SUAG have made to their research Details about the SUAG and impact log project can be found here.
Throughout the Project we have had a very productive research partnership with the charity Bipolar UK, a key element of which was a major survey of views of its members on advance care-planning more broadly and, more specifically, on self-binding advance directives or ‘Ulysses contracts’. The latter was published in The Lancet Psychiatry, together with artwork and creative research stemming from the engagement of the Bethlem Gallery artist, Beth Hopkins, with the research team. To include an artwork inspired by research in the Journal was a first for The Lancet Psychiatry. Beth also ran a number of very successful creative workshops for members of Bipolar UK.
Our work with civil society and service user organisations in Ghana and Palestine has produced novel support materials. In Palestine, we worked with persons with severe mental illness co-writing and audio-recording an illustrated storybook “Get to Know Us! Our Life with Mental Illness in the Palestinian Community” [here] illustrated by a prominent Palestinian artist. We also created awareness raising material which we presented to students and staff at the Open University in Qalqilya [here], public institutions, and community health centres in different parts of the West Bank. In Ghana, we are co-creating radio programmes featuring stories of lived experience which will be deliberated with the public by persons with mental illness, mental health providers, researchers and artists.
Through the PPE award we set up a partnership with the Bethlem Gallery. This has enabled artists, most of whom have lived experience of mental health services, to work with each of the 6 workstreams and to facilitate groups and produce public facing work. They have also produced events exploring the broad MHJ empowerment and protection theme in a participatory arts environment. The fruits of these activities are wide ranging and are being increasingly captured on the Bethlem Gallery website so won’t be detailed here. One example of the importance of the dynamic, ‘third space’ nature of this collaboration was the MHJ response to the BLM movement. In June 2020 a large MHJ social art installation on the perimeter of the Bethlem Royal Hospital inspired by the Mental Capacity Act and called ‘Some Questions About Us’ was graffitied. The letters “RIP Seni” were painted in red by an unknown person. This was a reference to the death of a young black man called Seni Lewis under police restraint in the Bethlem Hospital in 2010. The transformation of Some Questions About Us to RIP Seni in the early phase of the BLM movement set in motion a new set of reflections and processes for us. RIP Seni was preserved and donated to Bethlem Museum of the Mind’s permanent collection and an MHJ film was coproduced with the Lewis family exploring the moving but challenging emotions evoked by the graffiti. The film had its world premier at Sheffield DocFest, was acquired by Guardian films and is available to be viewed for free on the Guardian website. To date, it has been screened at 10 film festivals around the world including the London Short Film Festival. We look forward to reporting further impact of our MHJ participatory arts innovations in 2 years’ time.
Dissemination and legacy building
The MHJ project really has been extraordinarily intense, fascinating, and challenging for all of us under difficult global circumstances.
On reflection, we think our strategic aims from 2016 have been met. However, one aim that is outstanding is to build a legacy and network that can outlive the award. From now until September we plan to advance this objective and we have formed a new oversight group which melds the academic management group with key partners. Our activities will include:
- Completion and dissemination of a 30-minute film on the whole MHJ collaboration (expected by March 2022).
- Consolidation and enhancement of our MHJ website by Sept 2022 so that it will become a showcase of all the MHJ research and partnership activities and publicly accessible for an agreed period.
- Consolidation of the Bethlem Gallery/MHJ webpages by Sept 2022 so that the full richness of the participatory arts work is showcased in one place for the public.
- Completion and dissemination of a report on complex collaborative processes which will be submitted to the Wellcome and publicly available for the research community on our website (expected by March 2022).
- Dissemination of our guidance materials including the capacity guidance and advocacy and educational materials.
- Recording of commissioned BBC radio 4 documentary ‘Bound to the mast’ on advance decision making in Bipolar (expected this year).
MHJ Academic Management Group, January 2022.
1. In revision
2. A version of the original work Some Questions About Us now forms part of the Government Art Collection.