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.

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Coordinating mental health care

Hot on the heels of the publication of this paper from COCAPP, I’ve had two opportunities in recent weeks to present the content to (very select) groups, first at City, University of London and then at the South Wales Mental Health Nursing Journal Club and Seminar Group. Because I can, I thought to share the slides: so here they are, for anyone interested:

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Plan4Recovery

Here’s a post introducing the main findings paper from the Plan4Recovery study, led by Michael Coffey and funded through a Health and Social Care Wales Social Care Research Award.

Plan4Recovery used qualitative and quantitative methods to investigate the relationships between recovery, quality of life, social support and shared decision-making amongst people using social care services in Wales. The project team included mental health researchers with practitioner backgrounds, experience of using services, and of mixed methods studies. The paper, published in the journal Social Psychiatry and Psychiatric Epidemiology, is in gold open access form which makes it free to download.

For a shortcut, here’s the abstract:

Purpose

Mental health care is a complex system that includes social care organisations providing support for people with continuing needs. The relationship over time between decisional conflict, social support, quality of life and recovery outcomes across two time periods for people experiencing mental health problems in receipt of social care was investigated.

Methods

This is a mixed methods study comprised of a quantitative survey at two time points using measures of decisional conflict, social support, recovery and quality of life in a random sample (n = 122) using social care services in Wales, UK. In addition, 16 qualitative case studies were developed from data collected from individuals, a supportive other and a care worker (n = 41) to investigate trajectories of care. Survey responses were statistically analysed using SPSS and case study data were thematically analysed.

Results

Participants reported increasing decisional conflict and decreasing social support, recovery and quality of life over the two time points. Linear regression indicated that higher recovery scores predict better quality of life ratings and as ratings for social support decline this is associated with lower quality of life. Correlational analysis indicated that lower decisional conflict is associated with higher quality of life. Thematic analysis indicated that ‘connectedness and recovery’ is a product of ‘navigating the system of care’ and the experience of ‘choice and involvement’ achieved by individuals seeking help.

Conclusions

These results indicate that quality of life for people experiencing mental health difficulties is positively associated with social support and recovery and negatively associated with decisional delay.

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Observations from a small country

IMGP3076Here are two digital mementos from my trip to Australia: a photograph of a humpback whale (which breached and swam under the boat I was on for a good 45 minutes), and – more pertinently, perhaps, given the usual subject matter of this blog – the slides I used in my keynote talk at #ACMHN2018. This was the conference of the Australian College of Mental Health Nurses, held in Cairns in October 2018, and from which I have now returned home. My talk was all about mental health policy, services and nursing in Wales: which means this may actually be the only time I ever get to write about both ‘Wales’ and ‘whales’ in the same post.

Here are the slides, the material for which I’m also aiming write up as a paper:

 

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#ACMHN2018

Big thanks to the Board of Directors of the Australian College of Mental Health Nurses (ACMHN) for inviting me to speak at the 44th International Mental Health Nursing Conference, or #ACMHN2018, which took place in Cairns between 24th-26th October 2018. Never having been to Australia before, and indeed having never before left Europe, this was a big deal and I was grateful for the opportunity.

The theme for the conference was ‘mental health as a human right’, and the three days opened with a memorable welcome to country given by Yidinji tribal elder Henrietta Marrie followed by music and dance. Keynote speakers reflected well the conference theme in their talks, variously focusing on tackling health inequalities (including amongst Aboriginal people), suicide prevention in LGBQTI communities, rural mental health, human rights progress in Ireland (and more). Concurrent presentations were also very high-quality. Worth noting, too, is how the ACMHN used its conference to raise awareness of its campaign, being run in concert with other health care organisations, to demand that children and families seeking asylum and currently being held on the island of Nauru be brought to Australia.

In my keynote I elected to speak about mental health policy, services and nursing in Wales and made the point that the Welsh approach to health care is different from that found elsewhere in the UK, or in other parts of the world. To illustrate this I spoke about the Mental Health (Wales) Measure, the introduction of both future generations and safe staffing legislation and the imminent appearance of a Framework for Mental Health Nursing prepared through the All Wales Senior Nurse Advisory Group for Mental Health.

I realise that in the UK we have nothing quite like the ACMHN: a professional organisation comprised of subscribing members, which represents its field, acts as a credentialing body (nursing education in Australia being a generalist one) and which lobbies for better services and higher standards. The College has a Board and an elected president, the current incumbent being Eimear Muir-Cochrane, and employs a team including Kim Ryan as salaried chief executive officer. The ACMHN performs no trade union function (like the RCN, Unite the Union, and Unison in the UK), and does not register or regulate nurses (as the NMC does). Australia looks to have a number of colleges and associations organised along the same lines as the ACMHN, and I’ve found this site which lists bodies advancing practice and representing members in the fields of critical care, midwifery, children and young people’s nursing, and more.

#ACMHN2018 was an excellent experience, and I was pleased to meet roomfuls of fine and interesting people. For the record, #ACMHN2019 takes place in Sydney between 8th-10th October 2019, with the theme of ‘integrated care’.

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#MHNR2018 and #ACMHN2018

mosiEarlier this month I made the journey to the Science and Industry Museum in Manchester for the 24th International Mental Health Nursing Research Conference (#MHNR2018). Here’s a snip from the short piece which appeared on the Mental Health Nurse Academics UK (MHNAUK) website:

This is MHNAUK’s conference, run annually in conjunction with the RCN and with support from André Tomlin (The Mental Elf) who used social media to bring the event beyond the room.

Keynote speakers were: Dr Eleanor Longden, who talked about voice-hearing as a complex and significant experience; Professor Sonia Johnson, who spoke about the need to improve lives through improved psychosocial interventions; Professor Alan Simpson, who delivered the second annual MHNAUK lecture with a call for mental health nurses to speak up and assert their value; Professor Sir Robin Murray who spoke about biopsychosocial approaches to understanding, and treating, psychosis; and Dr Jonathan Gadsby who talked about the Critical Mental Health Nurses’ Network and invited delegates to join a discussion on conscientious objection. Concurrent sessions and symposia were packed and lively, and discussions and debates at the venue were mirrored by conference-related discussions taking place online. Podcasts with Robin Murray, Sonia Johnson, Alan Simpson and Laoise Renwick (who chaired the #MHNR2018 conference committee) can be found here on Soundcloud.

Also announced at the conference was news of Professor Mick McKeown as Skellern Lecturer for 2019, and Professor Patrick Callaghan as recipient of the Journal of Psychiatric and Mental Health Nursing Lifetime Achievement Award. Congratulations to both from all in MHNAUK, and we look forward to hearing their addresses at Kingston St George’s, London, on 13th June 2019.

#MHNR2018 closed with a date for the diary: the 25th International Mental Health Nursing Research Conference will take place on 12th-13th September 2019 at the RCN headquarters in London. More details about #MHNR2019 will be posted in due course.

This was an excellent two days, and I reflect on how far the conference showcased variety in perspectives and positions. Now, with John Baker having served a four year term as a member of the conference organising committee, expressions of interest are being sought (through MHNAUK) for an experienced mental health nurse academic to take his place. Planning for #MHNR2019 will begin in earnest towards the end of this year or early next, though as the post reproduced above states we already have our dates and venue confirmed.

Whilst we’re on the subject of conferences: earlier this year I received an invitation from Kim Ryan and the Board of Directors of the Australian College of Mental Health Nurses to speak at the 44th International Mental Health Nursing Conference. This takes place next month, in Cairns, and I’m currently in the process of writing (and rewriting) what I’m going to say. The subtitle to my talk is, ‘observations from a small country’, and I’m going to talk about the distinctiveness of mental health services and nursing in Wales and what can be learned from this. Perhaps when I’m done, and the conference has closed, I’ll post a full set of my slides here to this site.

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Care coordination as imagined, care coordination as done

IJIC aIn July 2018, in the context of writing about the COCAPP team’s newly published meta-narrative review of care planning and coordination in community mental health, I mentioned a further article which had just been accepted for publication. Today this paper has appeared online in the International Journal of Integrated Care. As with all outputs from the COCAPP study this new article is available in gold open access form, meaning that copies can be read and downloaded by anyone with an internet connection.

The paper is titled Care coordination as imagined, care coordination as done: findings from a cross-national mental health systems study. For a taster, here’s the abstract:

Introduction: Care coordination is intended to ensure needs are met and integrated services are provided. Formalised processes for the coordination of mental health care arrived in the UK with the introduction of the care programme approach in the early 1990s. Since then the care coordinator role has become a central one within mental health systems.
Theory and methods: This paper contrasts care coordination as work that is imagined with care coordination as work that is done. This is achieved via a critical review of policy followed by a qualitative analysis of interviews, focusing on day-to-day work, conducted with 28 care coordinators employed in four NHS organisations in England and two in Wales.
Findings: Care coordination is imagined as a vehicle for the provision of collaborative, recovery-focused, care. Those who practise care coordination are concerned with the quality of their relationships with service users and the tailoring of services, but limits exist to collaboration and open discussion. Care coordinators describe doing necessary work connecting people and the system of care. However, this work also brings significant administrative demands, is subject to performance management which distorts its primary purpose, and in a context of scarce resources promotes generic professional roles.
Conclusion: Care coordination must be done. However, it is not consistently being done in the way policymakers imagine, and in the real world of work can be done differently.

 

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