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There is a need for new imaginaries of care and social health for people living with dementia at home. Day programmes are one solution for care in the community that requires further theorisation to ensure an empirical base that is useful for guiding policy. In this article we contribute to the theorising of day programmes by using an ethnographic case study of one woman living with dementia at home using a day programme. Data were collected through observations, interviews and artefact analysis. Peg, whose case story is central in this article, was observed over a period of nine months for a total of 61 hours at the day programme, as well as 16 hours of observation at her home and during two community outings. We use a material semiotic approach to thinking about the day programme as a health ‘technology in practice’ to challenge the taken-for-granted ideas of day programmes as neutral, stable, bounded spaces. The case story of Peg is illustrative of how a day programme and its scripts come into relation with an arrangement of family care and life at home with dementia. At times the configuration of this arrangement works to provide a sort of stabilising distribution of care and space to allow Peg and her family to go on in the day-to-day life with dementia. At other times the arrangement creates limits to the care made possible. We argue that how we conceptualise and study day programmes and their relations to home and the broader care infrastructure matters to the possibilities of care they can enact.
There is a need for new imaginaries of care and social health for people living with dementia at home. Day programmes are one ‘care in the community’ solution that requires further theorisation to ensure that its empirical base can usefully guide policy. In this paper we contribute to theorising day programmes through an ethnographic case study of one woman living with dementia at home using a day programme. We collected data through observations, interviews and artefacts. We observed Peg, whose case story is central in this paper, over 9 months for a total of 61 hours at the day programme, as well as during 16 hours of observation at her home and 2 community outings. We use a material semiotic approach to thinking about the day programme as a health ‘technology in practice’ to challenge the taken-for-granted ideas of day programmes as neutral, stable, bounded spaces. Peg’s case story is illustrative of how a day programme and its scripts come into relation with an arrangement of family care and life at home with dementia. At times the configuration of this arrangement works to provide a sort of stabilising distribution of care and space to allow Peg and her family to go on in the day-to-day life with dementia. At other times the arrangement may create limits to the care made possible. We argue that how we conceptualise and study day programmes and their relations to home and the broader care infrastructure affects the possibilities of care they can enact.
Specialist early intervention teams consider clinician–patient engagement and continuity of care to be a driving philosophy behind the treatment they provide to people who have developed schizophrenia or a related psychotic illness. In almost all countries where this service model has been implemented there is a dearth of available data about what is happening to patients following time-limited treatment. Information on discharge pathways in England indicates that some early intervention specialists are discharging most of their patients from all psychiatric services after only 2 or 3 years of input. Some ex-patients will be living in a state of torment and neglect due to an untreated psychosis. In the UK, general practitioners should refuse to accept these discharge pathways for patients with insight-impairing mental illnesses.
Here we examine governmental policies that affect how people with mental health conditions are treated in society. The development of UK mental health services has been closely associated with the evolution of social policies, the increasing role of the state in the provisions for the population’s well-being, and the ‘Welfare State’. The provision of poor relief, dating from the Elizabethan Poor Law to its Victorian revision, has dominated the care of people with mental health conditions, both within and outside of institutions. Until the nineteenth century, the British state played a minimal role in the care of mental ill-health, and the 1800s witnessed a substantial growth in publicly funded asylums. These County Asylums were Poor Law institutions and remained so into the twentieth century. The UK’s modern mental health services arose from the Beveridge welfare state reforms but carried with them much of the baggage of the Victorian Poor Laws. The close relationship between the welfare state and mental health services illustrates the importance of social policy provision relating to income, employment, housing, education, health, and personal social services, to the broader provision of services for people with mental health conditions and the running of effective mental health services.
The involvement of informal carers (family and friends) in the care of people with severe mental illness (SMI) contributes to positive clinical outcomes, such as relapse prevention and symptom reduction. To date, the care pathway between inpatient and community care is not clearly defined impeding the smooth transition for patients, whilst carers are still barely involved in shared decision-making processes.
Objectives
To investigate the views and experiences of patients with SMI, carers and clinicians regarding the transition from inpatient to community mental health services.
Methods
Four mixed focus groups were conducted with individuals with SMI (n=12), carers (n=10) and clinicians (n=9) across four different mental health catchment areas in England. Participants discussed their experiences and provided their views on facilitators, barriers and solutions for carer involvement during the transition between mental health services. Data were analysed using thematic analysis.
Results
All stakeholders highlighted that factors that impede carer involvement are related to: confidentiality issues, unmet (structural and organisational) needs, and carer expectations. Patients with SMI, carers and clinicians agreed that carer involvement can be improved by providing psychoeducation to carers and training to staff, having accessible and transparent clinical procedures, and allocating specialised staff to carers.
Conclusions
The study findings emphasise that carer involvement is still overlooked, particularly when adults with SMI transition between services. The results provide guidance for practice emphasising the need for systematic involvement of carers across inpatient care, and for future research proposing effective ways of maximising carer involvement in mental health care.
To review the experiences of healthcare professionals (HCPs) and service users on the provision and receipt of home enteral nutrition (HEN) in primary care settings, respectively.
Backgrounds:
HEN supports the nutritional needs of service users in primary care settings who are unable to meet their nutritional requirements through oral intake alone. While HEN supports service users to remain in their home, the provision of HEN services can be variable. The prevalence of HEN is increasing as health systems shift delivery of care from acute to primary care settings, and therefore the evolving needs of HCPs and service users in relation to HEN deserve exploration.
Methods:
Quantitative and qualitative studies were included if they described (1) practices that support best outcomes in adults on HEN and residing in their own homes and/or (2) service user and HCP experiences of HEN. Studies on the economics of HEN were included. Databases searched included MEDLINE/PubMed, EMBASE, Web of Science, and CINAHL. Publications up to March 2021 were included. A descriptive analytical approach was used to summarise the findings.
Findings:
Key themes included the importance of initial education to enable service users to adapt to HEN and the need for support from knowledgeable HCPs. Access to support from HCPs in primary care was limited, and some HCPs felt their knowledge of HEN was inadequate. Service users highlighted the significant impact of HEN on daily living and emphasised the need for support from a HEN team. HEN services were also associated with reduced hospital admissions, lengths of stay in hospital, and costs of hospitalisation.
Conclusions:
A specialist HEN service can manage enteral nutrition-related complications, reduce unnecessary hospital admissions, and improve quality of care and patient satisfaction. Further education of HCPs is needed on the provision of HEN.
This chapter evaluates what the international and European human rights frameworks can offer, in terms of standard setting and avenues for international legal development and protection, to those irregular migrants who experience either mental health difficulties or have a psychosocial disability. The analysis in this chapter extends the normative frames of references to encompass ‘disability’, which is reconceptualised in the Convention on the Rights of Persons with Disabilities as a transformative status and a human rights argument. This chapter triangulates human rights, public health and disability-sensitive arguments to assess the relations between mental health and human rights in the context of irregular migration in human rights law and jurisprudence. While the European Court of Human Rights’ deportation cases concerning people with mental health issues tend to reflect an overall emergency-oriented and predominantly biomedical approach to mental health, several UN human rights treaty bodies set out a more holistic conceptualisation of mental health and psychosocial disability. The latter approach promotes non-discriminatory psychosocial interventions to guarantee access to community-based mental health care services and the underlying determinants of mental health for everyone regardless of migration status.
Diagnoses of personality disorder are prevalent among people using community secondary mental health services. Identifying cost-effective community-based interventions is important when working with finite resources.
Aims
To assess the cost-effectiveness of primary or secondary care community-based interventions for people with complex emotional needs who meet criteria for a diagnosis of personality disorder to inform healthcare policy-making.
Method
Systematic review (PROSPERO: CRD42020134068) of databases. We included economic evaluations of interventions for adults with complex emotional needs associated with a diagnosis of personality disorder in community mental health settings published before 18 September 2019. Study quality was assessed using the CHEERS statement.
Results
Eighteen studies were included. The studies mainly evaluated psychotherapeutic interventions. Studies were also identified that evaluated altering the setting in which care was delivered and joint crisis plans. No strong economic evidence to support a single intervention or model of community-based care was identified.
Conclusions
Robust economic evidence to support a single intervention or model of community-based care for people with complex emotional needs is lacking. The strongest evidence was for dialectical behaviour therapy, with all three identified studies indicating that it is likely to be cost-effective in community settings compared with treatment as usual. More robust evidence is required on the cost-effectiveness of community-based interventions on which decision makers can confidently base guidelines or allocate resources. The evidence should be based on consistent measures of costs and outcomes with sufficient sample sizes to demonstrate impacts on these.
The aim was to provide evidence of mortality and community care costs of people living in care homes and to investigate its association with mental health based on the Mental Health Clustering Tool (MHCT). In an observational study, 5,782 residents living in 104 care homes were followed from 2014 to 2016. Residents were categorised into four groups using the MCHT: three with mental health conditions, ‘non-psychotic’, ‘psychotic’ or ‘organic’; and one without mental health conditions, ‘non-clustered’. Generalised estimating equations were used to explore associations between mean community care costs over 6 months per patient and the clustering of residents into the four groups. Differences in survival rates of residents were plotted using Kaplan–Meier curves and tested with the log-rank test and Cox regression analysis. Community care costs were similar among residents with dementia (£431) and without mental health conditions (£407), while costs were higher among residents with non-psychotic (£762) and psychotic (£1,724) mental health conditions. After adjusting for patient and care home characteristics, residents with dementia were 30 per cent less likely to die compared with residents without mental health conditions. Similarly, residents with psychotic conditions and residents with non-psychotic conditions were 25 and 20 per cent less likely to die, respectively, than residents without mental health conditions. The MHCT seems to provide an informative stratification of care home residents with regards to survival and community care use.
Three key drivers that introduced the new managerialism into mental health services were funding constraints, the drive to measure health care quality and the move to deinstitutionalisation. A new cadre of managers, some of which were clinicians but many of whom were not, often rode roughshod over traditional clinical administration and many psychiatrists and nurses felt ignored and undervalued. New managers pushed ahead regardless, driven by a vision that was often alien to existing service providers. New services proved to be considerably more expensive than old ones. The tribal cultures of psychiatrists, nurses, other professions and managers have always been a major influence on the way services are run, and the change towards a managerial emphasis did not assist mutual understanding. Managerialism brought a new understanding of budgets, human resources and objectives into mental health services that was largely positive but mental health services are still fashioned around systems that were established for the acute hospital sector and not readily adapted to mental health service provision.
The process of de-asylumisation into a community care–based mental health system has been a messy business, a social crusade rather than a clinically thought-out process. Concomitants like modern psychopharmacology and the effects of the Royal College of Psychiatrists’ anti-stigma campaigns have helped, but care has varied substantially in quality across the country. Community care has relied on the qualities of individual psychiatrists and Community Mental Health Team (CMHT) members, as well as local GP and/or social services support, generally not helped by the numerous government White Papers. The reversion to medium-secure mental health units and reinstitutionalisation has been a core feature, publicly unrecognised. Mental health services have coped to varying degrees despite their core asylum resource being stolen from them, and the key need now is for the elimination of the primacy of risk assessment and the maintenance of the generality of general adult psychiatry.
Chapter 6 explores US survivors’ activism in the last three decades of the twentieth century through the lens of health, illness, and medicine. Radiation illness – physical and psychosocial – continued to concern US survivors. Women were frequently primary caretakers in Asia and Asian America, spurring female survivors to consider radiation illness from both patients’ and caregivers’ perspectives. This dual challenge became a driving force for US survivors to form trans-Pacific coalitions with Japanese and Korean survivors. US survivors’ understanding of illness that placed psychosocial factors at its center drew attention from the broader Asian American community, also plagued by the lack of resources for culturally aware medical and social services. Unlike the earlier medical exams conducted on US survivors by the Atomic Bomb Casualty Commission, US survivors’ grassroots activism proved capable of producing a solution fitting their needs. One distinct accomplishment of their activism was the creation of biannual health checkups conducted in America by Japanese physicians familiar with radiation illness, funded by the Japanese government and supported by the Asian American community.
Services were first based on providing mental deficiency colonies, then called hospitals by 1960. The 1970s saw the start of a recognition of a right to live in the community as equals. It took thirty years to close the old hospitals and develop an entirely community-based service. This needed changes to policy, funding agencies and the benefit system. This also involved changing the skills of previous staff and changing skills and attitudes in mainstream services. We now have a rights-based system, which is more fragmented and more challenging for people with learning disability to negotiate.
The number of patients resident in many hospitals had begun to decline several years before antipsychotics arrived on the scene. The population of asylums did shrink significantly throughout the 1960s and 1970s, though mental hospitals did not begin to vanish from the scene until the 1980s under Margaret Thatcher. Deinstitutionalisation was no accident. It was a consciously chosen neoliberal policy, pursued relentlessly over many decades. Welfare ‘reform’, in Britain as in the United States, has become a term of art disguising repeated assaults on the social safety net and the demonisation of those dependent upon it. ‘Community care’ in the era of neoliberal politics has turned out to be an Orwellian euphemism masking a nightmare existence for all too many of those afflicted with serious psychoses and for their families.
The Mental Health Act 1959 and A Hospital Plan for England and Wales in 1962 set a direction for mental health services away from inpatient and towards outpatient and community care which enjoyed support across the political spectrum. There has been a shift of focus over time from rights and recovery to marketisation, to risk and safety to modernisation and, finally, to well-being. There has been greater coherence in policy and consensus among staff in child and adolescent mental health than its adult counterpart, but service developments were hampered by chronic underfunding. Though, overall, it is probably fair to judge that mental health services in 2010 were both substantially more effective and significantly more humane than those prevailing in 1960, they have not fulfilled the aspirations held widely at the beginning of the period.
The period 1960–2010 has been one of marked change in UK society and mental health services. Prominent changes have included deinstitutionalisation and community care in mental health. These have taken place in an evolving framework of liberalisation, marketisation and globalisation. The global financial crisis of 2008 and the increasing impact of information technology, social media and artificial intelligence have ushered in a new era of meta-community care, which is now affected by the shock of Covid-19. It is timely to look back over the half-century of 1960-2010 to study and learn the lessons from developments in mental health during what has been labelled the neoliberal era, now in retreat.
Mind, State and Society examines the reforms in psychiatry and mental health services in Britain during 1960–2010, when de-institutionalisation and community care coincided with the increasing dominance of ideologies of social liberalism, identity politics and neoliberal economics. Featuring contributions from leading academics, policymakers, mental health clinicians, service users and carers, it offers a rich and integrated picture of mental health, covering experiences from children to older people; employment to homelessness; women to LGBTQ+; refugees to black and minority ethnic groups; and faith communities and the military. It asks important questions such as: what happened to peoples' mental health? What was it like to receive mental health services? And how was it to work in or lead clinical care? Seeking answers to questions within the broader social-political context, this book considers the implications for modern society and future policy. This title is also available as Open Access on Cambridge Core.