Tag: severe mental illness

End of life care for people with severe mental illness

Here is a first publication from the MENLOC study, reporting on a synthesis of research, policy and guidance in the area of end of life care for people with severe mental illness. This is in the journal Palliative Medicine, and the abstract is here:

Background: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all.
Aim: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness.
Design: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Coordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches.
Data sources: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary.
Results: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness.
Conclusions: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

We have a second paper from this study currently under review in another journal, and the complete, unabridged, report is soon to be appearing in the NIHR’s Health Services and Delivry Research journal.

The MENLOC study (again)

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.

Catch-up post 1: End of life care for people with severe mental illness

menloc logo 5In the first of a short series of catch-up blogposts on this site, this non-pandemic related one refers back to February 2020 and the submission of the draft final report for the MENLOC study.

MENLOC has been an evidence synthesis into end of life care for people with severe mental illness,  funded by the National Institute for Health Research Health Services and Delivery Research Programme. I’ve introduced the project on this site before, and the bulk of our work is now done. At some future point we’ll receive peer review comments back on the (very large) document we’ve submitted, and once our responses have been written, returned and accepted the report will progress towards publication in the National Institute for Health Research Journals Library. Next up will be shorter publications in journals, about which I can post more as we progress.

Summer research summary

Si3mdrnce returning from a week of walking August has included making final preparations for #MHNR2019, which is looking very exciting. Elsewhere, a big part of my work this month has been writing an analysis of qualitative interview data generated as part of a phase 2 trial of 3MDR for military veterans with treatment-resistant post-traumatic stress disorder. 3MDR, or Modular motion-assisted memory desensitisation and reconsolidation, is a novel psychological intervention involving walking on a treadmill towards personally selected images of trauma whilst in the company of a skilled therapist. The study is led by Jon Bisson, and here are Neil Kitchiner and John Skipper talking about what it involves:

Working on a trial has been an interesting, and new, experience for me, and I’ve been learning lots. My qualitative write-up is destined for inclusion in a final report for the trial’s funding body, Forces in Mind Trust, but during this work as a team we’ve also been planning papers for publication.

menloc logo 5MENLOC, our ongoing evidence synthesis into end of life care for people with severe mental illnesses (about which I have written on this blog before), is in full swing. We’ve reached the stage where we’re writing up syntheses of the research papers and other outputs we’ve included, organised via a series of themes. More on this to follow in due course.

Finally, it’s been good to work in support of colleagues who have led new papers for publications. Here’s Jane Davies‘ latest paper on the experiences of partners of young people living with cancer, and a paper led by Ray Samuriwo on wound care and mental health.

Introducing the MENLOC study

menloc logo 5A big part of my work this year is this recently funded evidence synthesis in the area of end of life care for people with severe mental illness. This is a cross-university study, supported by the National Institute for Health Research (NIHR) Health Services and Delivery (HS&DR) Research Programme, which also features service user researchers and a stakeholder advisory group populated by people with experience in both the mental health and end of life care fields.

Here, from our protocol, is a summary of what we’re up to:

The aim of this project is to synthesise relevant research and other appropriate evidence relating to the organisation, provision and receipt of end of life care for people with severe mental illness (including schizophrenia, bipolar disorder and other psychoses, major depression and personality disorder) who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure and who are likely to die within the next 12 months.

Outputs from the project will be tailored to stakeholders, and clear implications will be drawn for the future commissioning, organisation, management and provision of clinical care. Recommendations will be made for future data-generating studies designed to inform service and practice improvements, guidance and policy.

In this context, summary objectives are to:

  1. locate, appraise and synthesise relevant research;
  2. locate and synthesise policy, guidance, case reports and other grey and non-research literature;
  3. produce outputs with clear implications for service commissioning, organisation and provision;
  4. make recommendations for future research designed to inform service improvements, guidance and policy.

This review will be conducted according to the guidance developed by the Centre for Reviews and Dissemination (CRD) and will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement recommendations. Reflecting Evidence for Policy and Practice Information (EPPI) Centre principles, opportunities will also be embedded into the project to maximise stakeholder engagement for the purposes of both shaping its focus and maximising its reach and impact.

Searches will be developed initially using Medical Subject Headings (MeSH) and text words across health, social care and psychology databases from their inception. In consultation with a stakeholder advisory group, supplementary methods will be developed to identify additional material including policies, reports, expert opinion pieces and case studies. All English language items relating to the provision and receipt of end of life care for people with severe mental illness and an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure will be included. All included citations will be assessed for quality using tools developed by the Critical Appraisal Skills Programme (CASP), or alternatives as necessary if suitable CASP tools are not available. Data will be extracted into tables, and subjected to meta-analyses where possible or thematic synthesis with help from NVivo. Strength of synthesised findings will be reported where possible using GRADE and CerQual.

Information derived from the processes described above will be drawn on in an accessibly written summary. Uniquely, this synthesis will comprehensively bring together evidence on factors facilitating and hindering high-quality end of life care for people with severe mental illness, who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure, and evidence relating to services, processes, interventions, views and experiences. Implications will be stated for the improvement of relevant NHS and third sector care and recommendations will be made for future research.

menlocRight now, having convened a first advisory group meeting, we’re busy searching and sifting for evidence mostly through reviewing citations identified in a series of comprehensive database searches. I’ll be posting more here as the study progresses, but for the detail a good place to go is here for the published protocol.