Ben Hannigan

Background Crisis services are an important part of the system of mental health care for children and young people (CYP), but little is known about them or the experiences of CYP and families. This article reports findings from a normalisation process theory (NPT)-informed sequential mixed methods study, comprising three work packages (WPs), which set out to generate new knowledge in this area. Methods Approaches to CYP crisis care across England and Wales were mapped in WP1 using survey design. Previously reported findings from this WP point to heterogeneity in service types and interventions. In WP2 eight contrasting services (five in England, three in Wales) were selected from WP1 survey returns as case studies. In each case, interviews were held with CYP, parents/carers, commissioners, managers, practitioners and others. Within-case data were analysed using both NPT-informed framework, and inductive, approaches. In WP3 a cross-case synthesis led to the identification of key principles for future policy, services and practice. Results A total of 137 people took part in interviews (25 CYP, 25 parents/carers, 45 practitioners, 28 managers, seven commissioners and seven local stakeholders). Each service’s planned, deliberative, approach to crisis care implementation for CYP revealed strategic intentions, but variation was found in aims, goals and experiences. Differences were found in local capacities to adapt, negotiate and reframe available resources. Significant variation existed in the coherence of the crisis care offer, and with how individuals and groups worked alone and together to participate in implementation. Likewise, diversity was revealed in the effects crisis services exerted within their local systems. Conclusions Key principles underpinning the whole-system provision of sustainable mental health crisis care for CYP include: accessibility; the need for support in navigating complex systems; clarity on the offer; staff expertise and interpersonal skills; targeted services; continuity; flexibility balanced with stability; and service integration.

This article arises from a theory-informed, sequential, mixed methods project which combined a survey and multiple nested case studies to examine implementation and experience in the context of mental health crisis services for children and young people in England and Wales. Its primary contribution to mixed methods research is to show how theory, mixed methods and case studies can be practicably brought together to improve understanding of complex interventions introduced into complex systems. It makes a further contribution through a reflective exploration of the implementation of mixed methods research in sensitive fields involving vulnerable groups, by specifically exploring: participation and engagement; and fieldwork flexibility, power and control.

Background Crisis services are an important part of the system of mental health care for children and young people (CYP), but little is known about them or the experiences of CYP and families. This article reports findings from a normalisation process theory (NPT)-informed sequential mixed methods study, comprising three work packages (WPs), which set out to generate new knowledge in this area. Methods Approaches to CYP crisis care across England and Wales were mapped in WP1 using survey design. Previously reported findings from this WP point to heterogeneity in service types and interventions. In WP2 eight contrasting services (five in England, three in Wales) were selected from WP1 survey returns as case studies. In each case, interviews were held with CYP, parents/carers, commissioners, managers, practitioners and others. Within-case data were analysed using both NPT-informed framework, and inductive, approaches. In WP3 a cross-case synthesis led to the identification of key principles for future policy, services and practice. Results A total of 137 people took part in interviews (25 CYP, 25 parents/carers, 45 practitioners, 28 managers, seven commissioners and seven local stakeholders). Each service’s planned, deliberative, approach to crisis care implementation for CYP revealed strategic intentions, but variation was found in aims, goals and experiences. Differences were found in local capacities to adapt, negotiate and reframe available resources. Significant variation existed in the coherence of the crisis care offer, and with how individuals and groups worked alone and together to participate in implementation. Likewise, diversity was revealed in the effects crisis services exerted within their local systems. Conclusions Key principles underpinning the whole-system provision of sustainable mental health crisis care for CYP include: accessibility; the need for support in navigating complex systems; clarity on the offer; staff expertise and interpersonal skills; targeted services; continuity; flexibility balanced with stability; and service integration.

Background The Grenfell Tower fire, London, in 2017 caused 72 deaths, and mass evacuations. This evaluative case study examines the disaster response, particularly the mental health and wellbeing programme delivered by statutory services, notably the NHS and local government (RBKC). It explores what they did, and how they worked together and with voluntary sector organisations (VSOs) to identify key lessons for the planning of disaster responses. Methods The study focused on the first two years of the response. Data was gathered from publicly available sources and interviews with key informants. Uncertainties and missing information were clarified with organisations. A timeline of the response was created as well as an overview of key lessons for future responses. Results In national guidance RBKC was responsible for co-ordinating the longer-term recovery response. That was difficult because it had lost the trust of the local community. The NHS had to go beyond its assigned role of treatment and advice, which was too narrowly envisaged in national guidance. Both mental health and wellbeing need to be addressed after a disaster. Wellbeing is poorly defined, inadequately measured and rarely researched. Local and national VSOs played a vital role, but our understanding of the details is incomplete, as for most disaster responses. Conclusions Local communities must be fully involved in decisions about recovery programmes. Mental health and wellbeing are not synonymous but closely linked. Far more people will be injured psychologically than physically in a disaster. Large disasters require multi-agency partnerships sharing expertise and resources, rather than tasks being allocated between organisations through commissioning. There is a need to further develop and disseminate evidence-based mental health interventions delivered by non-experts as part of these partnerships. Training needs to teach practical skills as well as awareness. These lessons are also relevant to mainstream mental health services.

Background: Previous studies show ambiguous results concerning quality of palliative care among patients with severe mental disorders, defined as schizophrenia, moderate to severe depression, and bipolar disorders. Aim: To investigate quality in specialist palliative care among Danish patients with pre-existing severe mental disorders using data from the Danish Palliative Database. Design: Danish cohort study linking data from the Danish Palliative Database and hospital medical files. Setting/participants: All adult decedents in 2023 from Central Denmark Region affiliated with specialist palliative care. Hospital records were screened for severe mental disorders. Quality indicators included: Place-of-death, days from referral to death, specialist palliative care waiting time, discussion at multidisciplinary conferences and completion of symptom assessment. Results: Of 1869 patients, 80 (4.3%) had pre-existing severe mental disorders. Compared to patients without mental disorders, these patients died younger and more often from non-cancer conditions. They were less likely to complete symptom assessment (Risk Ratio (RR): 1.49 (95% CI: 1.15;1.95)). Those who also received active psychiatric treatment experienced longer waiting times for specialist palliative care (Mean ratios (MR): 3.48 (95% CI: 1.06;11.39)) and shorter palliative care pathways (MR: 0.44 (95% CI: 0.20;0.96)) than patients without active psychiatric treatment. Conclusion: Danish patients with active severe mental disorders were less likely to complete symptom assessment, had longer waiting times and shorter specialist palliative care pathways. Future efforts should focus on timely access to specialist palliative care and health professionals supporting completion of symptom assessments in this population.

Systematic reviews have identified variation and inequity in care provision for people with pre-existing severe mental illnesses who have palliative or end-of-life care needs. To analyse service use and variation for people with severe mental illness in the last year of life in Wales. This is an observational retrospective cohort study between 2018 - 2023 using anonymised linked routinely collected health datasets within a data dashboard. We identified n = 4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group, people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Unscheduled care use in the last year of life is associated with comorbidity, indicating opportunities for upstream intervention to improve treatment, experience, and quality of life for people with severe mental illness. Further investigation, such as mixed methods approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery, is needed.

Objectives: To analyse service use and variation for people with severe mental illness in the last year of life in Wales. Methods: This is an observational retrospective cohort study between 2018 – 2023 using anonymised linked routinely collected health datasets within a data dashboard. Results: We identified n=4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Conclusions: Unscheduled care use in the last year of life is associated with comorbidity indicating opportunities for upstream intervention to improve treatment, experience and quality of life for people with severe mental illness. Further investigation such as mixed methodological approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery for this patient cohort alongside developments in data linkage that include general practice, social care, nursing and specialist palliative care inputs are needed. What is already known on this topic: There is little current data on people with severe mental illness in the last year of life, including service encounters such as unscheduled care. Routinely collected data for health service dashboards are a ready source that can provide new information on service use for this group. What this study adds: We now know how many people are dying in Wales with severe mental illness and their use of services in the last year of life. Comorbidity is associated with unscheduled service use and lower rates of specialist palliative care suggest a possible upstream intervention is possible. How this study might affect research, practice or policy: Detailed data linkage studies that make use of wider datasets including general practice, social care and nursing services are needed. Qualitative first-hand accounts from patients, their families and professionals could add new evidence. Specialist palliative care intervention earlier for patients with severe comorbidity may reduce use of unscheduled care. Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors. Competing interest: VV is employed by the Digital Health and Care Wales. The Centre for Trials Research at Cardiff University receives infrastructure funding from Health & Care Research Wales. The authors declare no other competing interests. Data availability statement: The dashboard has been developed by Digital Health and Care Wales in collaboration with the Welsh Value in Health Centre and NHS Wales Palliative Care clinicians. Use of the data and access to the dashboard is available to all NHS Wales staff and a number of Welsh Government professionals. All queries and requests for further information can be directed to the Information Services team at dhcw.info@wales.nhs.uk . Contributors: All authors conceived and designed the study. VV prepared the dashboard data for analysis. MC performed the analysis for this paper. All authors contributed to the interpretation of the results. MC wrote the initial draft of the manuscript and all authors critically reviewed and approved the final version.

Aim: There is an absence of evidence generated in a UK context to support interventions based on occupational therapists’ core skills for people living with early-stage dementia. To inform the development of a programme theory and a future evaluation, this paper aimed to describe real-world (routine) community-based occupational therapy interventions for this population and contextual barriers. Method: Occupational therapy practitioners ( n = 21) from five Health Boards in Wales, UK participated in semi-structured interviews ( n = 17) which were audio recorded, transcribed, and analysed thematically. Findings: The availability of, and access to, real-world community-based interventions was variable, and associated with multilevel contextual barriers (resources, understanding of dementia specialist occupational therapy, professional influence, and evidence base). Where available and accessible, contents comprised a pre-intervention component (relational work, assessment, and goal setting) and intervention component (personalised problem-solving and coping strategies, emotional support, and advice and signposting), to meet needs associated with everyday activities and poor wellbeing. Variation in mode, duration, contents, and who received interventions, was associated with contextual barriers. Conclusion: Findings indicate that the development of an intervention programme theory and future evaluation design, will need to account for the impact context may have on the variability of real-world intervention characteristics, and how this in turn may influence outcomes.

This paper begins with an overview of Peter Huxley’s work across four areas: access to mental health care; understanding mental health and illness through a biosocial lens; social inclusion; and quality of life. Interconnected themes revealed in this body of research are then addressed, focusing particularly on: the commitment to interdisciplinarity; the value of conducting investigations which have demonstrable real-world application; measurement; and collegiality. The paper then moves to a personal reflection on Peter Huxley’s rock-solid support for growing a programme of mental health services research in Wales, before concluding with a forward-looking account of the lasting impact of his contribution

Background One in six five 16-year-olds have a probable mental health difficulty. Of these, almost half of older teenagers and a quarter of 11–16-year-olds report having self-harmed or attempted suicide. Currently, there is little research into mental health crisis services for young people, with little understanding of what services exist, who uses them, or what works best. Question ‘How are mental health crisis responses for children and young people up to the age of 25 sustained, experienced and integrated within their local systems of services’? Objectives To describe National Health Service (NHS), local authority, education and third sector approaches to the implementation and organisation of crisis care for children and young people across England and Wales. To identify eight contrasting case studies in which to evaluate how crisis services have developed and are currently organised, sustained, experienced and integrated within the context of their local systems of services. To compare and contrast these services in the context of the available international evidence, drawing out and disseminating clear implications for the design and delivery of future crisis responses for children and young people and their families. Methods A sequential mixed methods approach, underpinned by normalisation process theory will be employed. A survey will create a detailed record of how crisis responses across England and Wales are organised, implemented and used. Subsequently, eight contrasting services in relation to geographic and socioeconomic setting, populations served, and service configuration will be identified as case studies. Interviews will be conducted with children, young people and parents/carers who have used the service, as well as commissioners, managers and practitioners. Operational policies and service usage data will also be examined. Analysis of how each service is provided, experienced, implemented and sustained will be conducted both inductively and deductively, reflecting normalisation process theory constructs.