It is Time to Stop Talking and Start Doing: The Views of People with Learning Disability on Future Research

There is a need for people with learning disabilities to be involved in directing research to ensure that the research is meaningful to those it concerns. This paper describes a scoping exercise to determine the research priorities for the field of learning disabilities for the next ten years. It focuses specifically on the role of people with learning disabilities in setting this research agenda and describes the methodology used, which involved a series of consultation workshops. Analysis of the data from these generated six priority themes: access to health care; getting good support; the right to relationships; housing options; work and personal finance; inclusion in the community. The findings showed that it is possible for people with learning disabilities to participate in setting a research agenda and there was agreement between the different stakeholders on the fundamental priorities. Moreover, the inclusion of people with learning disabilities provided a perspective that could not be adequately represented by other stakeholder groups. People with learning disabilities were concerned that research has a meaningful impact and can lead to demonstrable improvements in care. In order for this to happen there is a need for widespread dissemination of accessible outputs that reach the relevant stakeholders

Extending health and safety protection to informal workers : an analysis of small scale mining in KwaZulu-Natal.

Thesis (M.Dev. Studies)-University of KwaZulu-Natal, Durban, 2006.This study explores the potential extension of occupational health and safety to informal small scale miners in South Africa. It was motivated by an understanding of the integral but much neglected relationship between the quality of work and the goals of poverty reduction and economic development. The study recognises that poor working conditions can reduce productivity and that work-related injury or illness is an unaffordable risk for those working without access to adequate social protection. Further, the protection of labour standards, including work health and safety, is an established basic right in those countries where relevant LLO Conventions have been ratified. Conventional occupational health and safety (OHS) regulation operates through formal employment structures and therefore offers limited or no protection to informal workers. In a country where increasing policy attention is being paid at national and local level to the employment and economic growth potential of the informal economy, this study practically explores within one sector - mining - how the institutional positions of both conventional and identified non-conventional OHS stakeholders work to constrain, or provide opportunities for, the extension of health and safety protection to those working informally. The focus on one kaolin and one clay/coal informal small scale mine site within KwaZulu-Natal and the use of in-depth interviews with workers and a range of identified stakeholders enabled a structured qualitative investigation into the health and safety challenges faced by informal miners; the nature of the support provided to small scale mining by the Department of Minerals and Energy (DME); and the institutional processes acting through national, provincial and local structures that do or could influence workers' access to OHS. The threats presented by each mine to worker and public, as well as environmental health and safety were found to be numerous and severe. There was also evidence of a negative impact of poor working conditions on both the health and economic security of the workers. Despite this, the study identified a vacuum of accountability for the labour protection of informal miners. Conventional mining OHS mechanisms are vertically driven, resource intensive and technocratic. They are both inappropriate for and inflexible towards meeting the challenges presented by informal work. In a minority of cases interdependent links between the responsibil ities of non-conventional OHS stakeholders and work health and safety are understood, but the lack of a worker focus, the institutional boundaries within which people work, their limited OHS knowledge, and the major financial and human resource constraints they face, appear to present significant barriers to any actual OHS intervention. Through the research process it became clear that the management and nature of the DME's small scale mining support strategy itself present fundamental barriers to the extension of OHS. The strategy is a product of a narrow conceptual isation of what is needed to achieve formalisation. This, and the lack of genuine worker representation and accountability within it, means that not only does the strategy fail to attend to OHS and a variety of other worker needs, but that the DME continues unchallenged in its neglect of such issues. With an understanding of the real constraints faced by both workers and the range of identified OHS stakeholders, and in view of the future plans to overhaul the existing national OHS framework in South Africa, the study concludes by outlining some practical opportunities and recommendations that could help to break down existing barriers to the OHS protection of informal workers. Conventional OHS mechanisms could be reoriented to take advantage of cheaper, simpler and more appropriate workerled approaches which could potentially achieve substantial improvements for large numbers of informal workers. Realistic opportunities also exist to more firmly secure the participation of promising non-conventional OHS stakeholders including, in this case, formal mining companies and local government. Finally, there are ways to bridge existing deep divides between social and economic institutional responsibilities that currently serve to obscure potential resource sharing and multiplier impact opportunities of working more collaboratively to improve OHS for the benefit of informal workers

The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study

SummaryBackgroundThe Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population.MethodsThe population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated.FindingsThe Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52–75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54–76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54–75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006).InterpretationThe Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths—factors that can largely be ameliorated.FundingDepartment of Health for England

HIV gp120 in the lungs of antiretroviral therapy–treated Individuals impairs alveolar macrophage responses to pneumococci

Rationale People living with HIV (PLWH) are at significantly increased risk of invasive pneumococcal disease, despite long-term antiretroviral therapy (ART). The mechanism explaining this observation remains undefined. Objectives We hypothesized apoptosis-associated microbicidal mechanisms, required to clear intracellular pneumococci that survive initial phagolysosomal killing, are perturbed. Methods Alveolar macrophages (AM) were obtained by bronchoalveolar lavage (BAL) from healthy donors or HIV-1-seropositive donors on long-term ART with undetectable plasma viral load. Monocyte-derived macrophages (MDM) were obtained from healthy donors and infected with HIV-1BaL or treated with gp120. Macrophages were challenged with opsonized serotype 2 Streptococcus pneumoniae and assessed for apoptosis, bactericidal activity, protein expression and mitochondrial reactive oxygen species (mROS). AM phenotyping, ultra-sensitive HIV-1 RNA quantification and gp120 measurement were also performed in BAL. Measurements and Main Results HIV-1BaL infection impaired apoptosis, induction of mROS and pneumococcal killing by MDM. Apoptosis-associated pneumococcal killing was also reduced in AM from ART treated HIV-1-seropositive donors. BAL fluid from these individuals demonstrated persistent lung CD8+ T-cell lymphocytosis, and gp120 or HIV-1 RNA was also detected. Despite this, transcriptional activity in AM freshly isolated from PLWH was broadly similar to healthy volunteers. Instead, gp120 phenocopied the defect in pneumococcal killing in healthy MDM through post-translational modification of Mcl-1, preventing apoptosis induction, caspase activation and increased mROS generation. Moreover gp120 also inhibited mROS dependent pneumococcal killing in MDM. Conclusions. Despite ART, HIV-1, via gp120, drives persisting innate immune defects in AM microbicidal mechanisms, enhancing susceptibility to pneumococcal disease

Where to start? The Irish Emergency Department Antimicrobial Discharge (EDAD) study:a multicentre, prospective cohort analysis

Objectives: To determine the percentage of patients across Ireland who are discharged from the Emergency Department (ED) with an antimicrobial prescription, the indication, classification of infections, and guideline compliance. To identify potential areas for antimicrobial stewardship (AMS) interventions in the ED. Patients and methods: A multicentre, prospective cohort analysis study in EDs across eight hospitals in Ireland. At each site, patients aged 1 month and older who presented to the ED and were discharged directly from the ED were included. A random selection of records of patients discharged from the ED were reviewed until a minimum of 30 records with an infection diagnosis resulting in an antibiotic prescription were obtained per hospital. The number of patient discharges with no antibiotic prescriptions were included to calculate the denominator. The indication, infection classification and guideline compliance data were collected on the 30 prescriptions in the participating hospitals. Results: A total of 2619 patient records were reviewed. Of these, 249 (9.5%) patients were discharged with antimicrobial prescriptions from the ED. Most (158; 63%) were classified as probable bacterial infection, 21 (8%) as probable viral, and 18 (7%) had no documented evidence of infection. Three indications accounted for 73% of antimicrobial prescriptions: skin/soft tissue infection; ear, nose and throat infection; and urinary tract infection. Overall guideline compliance was 64%. Conclusions: Several areas for AMS interventions to optimize antimicrobial prescribing in the ED were identified, including targeted local and national guideline reviews, delayed prescribing, improved point-of-care testing and prescriber and patient education