A problem with inclusion in learning disability research.

People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it

Reducing avoidable inequalities in health: a new criterion for setting health care capitation payments

Traditionally, most health care systems which pretend to any sort of rationality and cost control have sought to allocate their limited funds in order to secure equal opportunity of access for equal need. The UK government is implementing a fundamental change of resource allocation philosophy towards contributing to the reduction of avoidable health inequalities. The purpose of this essay is to explore some of the economic issues that arise when seeking to allocate health care resources according to the new criterion. It indicates that health inequalities might arise because of variations in the quality of health services, variations in access to those services, or variations in the way people produce health, and that the resource allocation consequences differ depending on which source is being addressed. The paper shows that an objective of reducing health inequalities is not necessarily compatible with an objective of equity of access, nor with the objective of maximising health gain. The results have profound consequences for approaches towards economic evaluation, the role of clinical guidelines and performance management, as well as for resource allocation methods

Variance estimation for a low-income proportion

Proportions below a given fraction of a quantile of an income distribution are often estimated from survey data in poverty comparisons. We consider the estimation of the variance of such a proportion, estimated from Family Expenditure Survey data. We show how a linearization method of variance estimation may be applied to this proportion, allowing for the effects of both a complex sampling design and weighting by a raking method to population controls. We show that, for 1998-99 data, the estimated variances are always increased when allowance is made for the design and raking weights, the principal effect arising from the design. We also study the properties of a simplified variance estimator and discuss extensions to a wider class of poverty measures

Access to shops: The views of low-income shoppers

Concern is mounting as the retail stranglehold upon access to food grows. Research on the implications of restructuring retailing and health inequality has failed to involve low-income consumers in this debate. This paper reports on an exercise conducted for the UK Government's, Social Exclusion Unit's Policy Action Team on Access to Shops. The survey provides a useful baseline of the views of low-income groups in England. The choices that people on low income can make were found to be dominated by certain factors such as income and, most importantly, transport. Consumers reported varying levels of satisfaction with retail provision. The findings suggest gaps between what people have, what they want and what the planning process does and does not offer them. Better policy and processes are needed to include and represent the interests of low-income groups

On the relevance of the “genetics-based” approach to medicine for sociological perspectives on medical specialization

This paper draws on a study on the development of medical genetics as a medical specialism in the UK and Canada to reflect on how local and national contexts affect specialty formation. The paper begins by supporting earlier findings in the literature that stress, first, technological innovations as driving specialty formation, and, second, the domination of physicians in the division of medical labour. Beyond this, however, the paper explores the specific circumstances under which geneticists set about turning their work into a medical specialism based on a “genetics-based approach” to illness and how “medical genetics” as a specialism was assessed and configured to fit national and regional health service requirements

Returning children home from care: What can be learned from local authority data?

International Human Rights and child rights conventions as well as U.K. wide legislation and guidance require that children in care should be returned home to one or both parents wherever possible. Reunification with parents is the most common route out of care, but rates of re‐entry are often higher than for other exit routes. This study used 8 years of administrative data (on 2,208 care entrants), collected by one large English local authority, to examine how many children were returned home and to explore factors associated with stable reunification (not re‐entering care for at least 2 years). One‐third of children (36%) had been reunified, with adolescent entrants being the most likely age group to return home. Three quarters (75%) of reunified children had a stable reunification. In a fully adjusted regression model, age at entry, being on a care order prior to return home, staying longer in care, being of minority ethnicity, and having fewer placements in care were all significant in predicting chances of stable reunification. The results underline the importance of properly resourcing reunification services. The methods demonstrate the value to local authorities of analysing their own data longitudinally to understand the care pathways for children they look after

Community Services and Transforming Care: Reflections and Considerations

Purpose: The purpose of this paper is to consider the existing evidence base regarding community services for people with learning disabilities in the context of transforming care (TC). Design/methodology/approach: Reflections and commentary on the provision of community services for people with learning disabilities following Washington et al.’s article on admissions and discharges from assessment and treatment units in England. Findings: The existing evidence base pertaining to community learning disability teams in the UK is dated, sparse and methodologically weak. A greater focus on researching community services for people with learning disabilities is needed in order to inform best practice guidelines. Originality/value: The success of the TC agenda is contingent on the provision of high quality community services. However, the focus has been on discharging individuals from hospital, rather than the support available to them once they leave

The state of construction training and employment in the local economy of Jersey

There is a crisis in the training and skills provision of the Channel Island of Jersey's construction industry that has similarities with the situation in Britain. The main problems relate to the unavailability, inappropriateness and narrow focus of skills, the demand-driven and task- or job-specific nature of training, the Jersey-born and male focus of recruitment, and the uncoordinated, traditional and short-term approach of the local construction firms towards promotion and financing of training provision. It is argued that a structured training policy incorporating the needs of both education and industry and holding a long-term vision should enable the construction industry of Jersey to reverse the downward spiral

Personalizing protocol-driven care: the case of specialist heart failure nurses.

AIM: This paper is a report of a study conducted to explore how specialist heart failure nurses negotiate treatment advice with patients, in the context of an increasing expectation that clinical staff in the National Health Services will follow guidelines in their daily work. BACKGROUND: The development of specialist nurse roles has given rise to questions about their compatibility with patient-centred care. However, research has revealed little about how specialist nurses balance clinical guidelines with traditional caring tasks. METHODS: Semi-structured interviews (n = 10) were conducted with specialist heart failure nurses in northern England recruited from a heart failure specialist nursing contact list. In addition, non-participant observations were carried out on nurse-patient consultations (n = 16) in one regional nurse-led heart failure clinic. Data were collected between 2003 and 2005, and analysed using a variation of grounded theory. FINDINGS: Heart failure nurses sought to combine traditional caring work with the wider goal of improving patient outcomes by 'personalizing' their advice to patients and presenting their heart failure as 'typical'. They accommodated protocol-driven care into their daily routines, and perceived no disjuncture between evidence-based practice and patient-centredness. However, their approach allowed little space for the exploration of each patient's own priorities about their illness. CONCLUSION: There is a need both to re-examine the appropriateness of traditional caring concepts, and to reflect on the need to incorporate patients' own values into the consultation process

The chimera of choice in UK food policy 1976-2018

Purpose This paper presents a critical discourse analysis of “choice” as it appears in UK policy documents relating to food and public health. A dominant policy approach to improving public health has been health promotion and health education with the intention to change behaviour and encourage healthier eating. Given the emphasis on evidence-based policy making within the UK, the continued abstraction of choice without definition or explanation provoked us to conduct this analysis, which focuses on 1976 to the present. Design/methodology/approach The technique of discourse analysis was used to analyse selected food policy documents and to trace any shifts in the discourses of choice across policy periods and their implications in terms of governance and the individualisation of responsibility. Findings We identified five dominant repertoires of choice in UK food policy over this period: as personal responsibility, as an instrument of change, as an editing tool, as a problem and freedom of choice. Underpinning these is a continued reliance on the rational actor model, which is consonant with neoliberal governance and its constructions of populations as body of self-governing individuals. The self-regulating, self-governing individual is obliged to choose as a condition of citizenship. Research limitations/implications This analysis highlights the need for a more sophisticated approach to understanding “choice” in the context of public health and food policy in order to improve diet outcomes in the UK and perhaps elsewhere