In July 2020, with colleagues I received peer review feedback on our draft MENLOC study final report, about which I’ve written before.
Final reports from studies funded by the National Institute for Health Research are sizeable affairs, typically running to 40,000 words or so and detailing the minutiae of what’s been done, and what’s been found. Once peer and editorial review has been satisfied draft reports progress to pre-publication, involving the careful copyediting of the text. Finally, once everything is typeset each report appears in a single issue of the open access journal bearing the name of the funding programme through which the research award was originally made. The screenshot I’ve included in this post is from the NIHR’s comprehensive information for authors, which takes grantholders through the process.
In the case of MENLOC the journal in which our final report will be published is Health Services and Delivery Research, and we’re expecting publication to be sometime in the spring of 2021. In the meantime, this current version of our plain English summary captures what we’ve done and what we’ve found:
We brought together evidence from research, policies, guidance and case studies in the area of end of life care for people with severe mental illness. End of life care refers to the help given to people with life-threatening conditions in their expected last 12 months. Severe mental illness refers to a range of issues for which care is usually provided by specialist mental health services.
An advisory group, including people with experience of mental health and end of life care, helped us throughout our project. We searched research databases, journals and online sources. We assessed research articles for their quality, and summarised their content. In one review we combined content from research with content from policy and guidance. In another review we combined the content of the case studies. We wrote synthesis statements summarising the research evidence, and assessed how confident decision-makers should be in these.
We included 104 documents overall. We synthesised research, policy and guidance under themes reflecting their content: the structure of mental health and end of life care services; professional practice; providing and receiving care; and living with severe mental illness. We synthesised case studies under themes relating to: delays in diagnosis; making decisions; treatment futility; supporting people; and the experience of care.
Our project has implications for care. Partnerships should be built between mental health and end of life care staff, and people should be supported to die where they choose. Care staff need education, support and supervision. A team approach is needed, including support for advocacy. Physical health care for people with severe mental illness needs improving so that life-threatening conditions can be recognised sooner.
Future research should involve people with severe mental illness at the end of life and their carers. Research is also needed evaluating new ways of providing and organising care.
MENLOC is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (project number 17/100/15).
The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care
In addition to responding to these detailed reviewers’ and editors’ comments, as our MENLOC report continues on its way we’ll also be preparing papers for publication, and thinking about next steps in this programme of research. We’ve discovered that very little is known about how best to provide care at the end of life to people with severe mental health problems, making this a wide-open area for researchers and people concerned with service improvements.