Carers' roles in personal budgets: tensions and dilemmas in front line practice

Adult social care in England emphasises the service and support preferences of disabled and older people. Personal budgets play a central role in this development. Carers in England have also secured rights to assessment and support in their care-giving roles. However, these policies have developed largely separately, with little consideration of the interdependencies between disabled and older people and their carers. There is limited evidence detailing current practice. This paper explores current practice, particularly how far social care practitioners recognise and balance the needs and interests of service users and carers, especially those with cognitive and/or communication impairments. The paper reports findings from nine qualitative focus groups (forty-seven participants) conducted in 2012 with practitioners involved in service user personalisation and carer assessments from older people and learning disability teams across three English authorities. Findings indicate inconsistencies in practice. Although practitioners felt they sought to involve carers, practices varied between authorities, teams and colleagues in the same team. Clear and timely links between processes for service users and carers were absent. Practice was discussed most frequently around service user assessments, other stages of personalisation appeared ad hoc. Areas of confusion and tension are identified. Future policy and practice developments and challenges are also considered

A UKSeRP for SAIL: striking a balance

ABSTRACT Objectives Whilst the current expansion of health-related big data and data linkage research are exciting developments with great potential, they bring a major challenge. This is how to strike an appropriate balance between making the data accessible for beneficial uses, whilst respecting the rights of individuals, the duty of confidentiality and protecting the privacy of person-level data, without undue burden to research. Approach Using a case study approach, we describe how the UK Secure Research Platform (UKSeRP) for the Secure Anonymised Information Linkage (SAIL) databank addresses this challenge. We outline the principles, features and operating model of the SAIL UKSeRP, and how we are addressing the challenges of making health-related data safely accessible to increasing numbers of research users within a secure environment. Results The SAIL UKSeRP has four basic principles to ensure that it is able to meet the needs of the growing data user community, and these are to: A) operate a remote access system that provides secure data access to approved data users; B) host an environment that provides a powerful platform for data analysis activities; (C) have a robust mechanism for the safe transfer of approved files in and out of the system; and (D) ensure that the system is efficient and scalable to accommodate a growing data user base. Subject to independent Information Governance approval and within a robust, proportionate Governance framework, the SAIL UKSeRP provides data users with a familiar Windows interface and their usual toolsets to access anonymously-linked datasets for research and evaluation. Conclusion The SAIL UKSeRP represents a powerful analytical environment within a privacy-protecting safe haven and secure remote access system which has been designed to be scalable and adaptable to meet the needs of the rapidly growing data linkage community. Further challenges lie ahead as the landscape develops and emerging data types become more available. UKSeRP technology is available and customisable for other use cases within the UK and international jurisdictions, to operate within their respective governance frameworks

Personalisation : where do carers fit?

This unique book brings together, for the first time, advocates and critics of the personalisation agenda in English social care services to debate key issues relating to personalisation. Perspectives from service users, practitioners, academics and policy commentators come together to give an account of the practicalities and controversies associated with the implementation of personalised approaches. The conclusion examines how to make sense of the divergent accounts presented, asking if there is a value-based approach to person-centred care that all sides share

Erosion and Sedimentation on the Carnegie Ridge, Eastern Equatorial Pacific

The Carnegie Ridge is an aseismic ridge that bounds the south flank of the Panama Basin. Dynamic sedimentation around Carnegie Ridge is shown by evidence of erosion, dissolution and re-deposition of pelagic sediments where erosive episodes have carved out relict landscapes. I examine three aspects of these features: 1) What are the mechanisms involved in the erosive episodes; 2) Can the ages of the erosive events be constrained; and finally 3) Can the transport mechanism be identified? The extent of erosion and re-deposition was studied during the R/V Melville cruise MV1014 from October to November 2010 to compare with geochemical estimates of sediment focusing. The MV1014 cruise acquired geochemical, geological and geophysical data to compare with earlier surveys and scientific drilling. Large-scale erosion, presumably driven by massive, density-driven deepwater spillover events from the Peru Basin, created a prominent valley named Sand Dune Valley in the study area. A second, smaller valley, known as Western Valley, was likely formed by medium-scale erosion catalyzed by a ridge jump with subsequent normal faulting forming a fault scarp which has intensified near-bottom currents. Smaller-scale erosional events created small-scale surface sediment truncation. Utilizing a seismic stratigraphy developed by comparing seismic horizons to the sediment columns at DSDP Site 157 and ODP Site 846, and exposure of diagenetic chalk along the valley floors allowed a reconstruction of the timing of these highly erosive episodes. Two major erosive episodes are proposed to have occurred at ~5 Ma and ~3Ma which removed as much as 75 km3 of sediment. The erosive episodes may be linked to a ridge jump of the Galapagos hotspot at ~5-4 Ma and the final closing of the Isthmus of Panama ~3Ma. Sediment transport regimes for the Quaternary were determined using horizons dated at 2 Ma (PL-2), 1.7 Ma (PL-1) and 84 ka (Q-84). Isopachs created using the three horizons concluded that the dominant transport regime occurs to the NW of the study area with strong lateral transport to the sides of the valleys

Taking on and taking over : choice and control for physically disabled young adults

This study looked at ways of supporting physically disabled young adults to achieve their preferred levels of control over care and support arrangements: * What are physically disabled young adults experiences of managing their care and support arrangements? * How can they be better supported? Key findings and practice implications are included. A video about the research findings is also available and a poster showing the challenges and solutions for supporting young physically disabled people

Taking on choice and control in personal care and support : the experiences of physically disabled young adults

Summary: Research on self-directed care has focused on older people and adults with learning disabilities or mental health difficulties. This paper reports physically disabled young adults’ experiences of self-directed care. Such work is important because young adults are a ‘minority’ group within adult social care. This, and their still developing life skills and lack of life experience, may have a bearing on their experiences of self-directed care and associated support needs. An exploratory qualitative study using semi-structured interviews investigated this issue. Participants were aged 19-29 years with a range of congenital and acquired impairments. Findings: Many aspects of interviewees’ experiences of self-directed care appeared to be influenced by their limited life experience, the fact they are still developing life skills and are a minority group within adult social care. Interviewees identified their lack of life experience and self-confidence as making them cautious in assuming responsibility for their care arrangements and, typically, their desire for on-going parental support. They also believed their age and life stage contributed to difficulties managing carers and PAs. Preferences around the characteristics of carers/PAs were influenced by their age and desire to integrate into mainstream activities. Information provided by statutory services did not (fully) acknowledge that some users were young adults. Applications: Compared to other physically disabled users of adult social care, young adults’ under-developed life skills and lack of life experience influences their experiences as users, and the support they needed to assume control of their care arrangements. Tailored information and support for this ‘minority group’ is required. Keywords: self- or consumer-directed support; personalization; adult social care; physical disability; young adults; transitio

Survival or Natural Death? Issues Related to the Sustainability of Writing across the Curriculum Programmes

This paper examines the issue of sustainability in Writing Across the Curriculum (WAC) programmes, focusing on the role of ‘bottom up’ initiatives in their development and spread. It argues that, although this element is essential for the start up of WAC initiatives, sustainability can only be achieved through institutionalization, a process requiring ‘top down’ measures.  Since both bottom up and top down approaches are essential to successful implementation, it is critical to find the right balance between both approaches. The experience of WAC implementation at the Mona Campus of the University of the West Indies, Jamaica is used as a context within which to examine these issues. This example demonstrates a mix of bottom up and top down implementation approaches, but with insufficient top down commitment to guarantee sustainability.  It concludes by looking at lessons learned and areas of continued activism which have borne some fruit. It is suggested that the issue of sustainability in the case of grassroots advocates is perhaps better conceptualized as sustained efforts to establish programmes, rather than programme sustainability per se

Using Student Voice to Respond to Middle School Bullying: A Student Leadership Approach

Bullying prevention and intervention are ongoing challenges for all educators, school psychologists included. A lack of research exists regarding the potential role of middle school students as direct actors in bullying prevention and intervention. This article describes a novel student leadership group for seventh graders in which the primary leadership task was the creation of bullying prevention ideas for their school. The details of this group are described, as are the results of postgroup student interviews. Results indicate that the students found the group to be valuable. However, the broader collaborative effort between educators at this school and the university researchers to maintain a comprehensive bullying prevention system did not survive the school’s reorganization. This article addresses the lessons learned and the potential implication of this project for school psychology practice

Using general practice clinical information system data for research: the case in Australia

General practice is often a patient’s first point of contact with the health system and the gateway to specialist services. In Australia, different aspects of the health system are managed by the Commonwealth Government and individual state / territory governments. Although there is a long history of research using administrative data in Australia, this split in the management and funding of services has hindered whole-system research. Additionally, the administrative data typically available for research are often collected for reimbursement purposes and lack clinical information. General practices collect a range of patient information including diagnoses, medications prescribed, results of pathology tests ordered and so on. Practices are increasingly using clinical information systems and data extraction tools to make use of this information. This paper describes approaches used on several research projects to access clinical, as opposed to administrative, general practice data which to date has seen little use as a resource for research. This information was accessed in three ways. The first was by working directly with practices to access clinical and management data to support research. The second involved accessing general practice data through collaboration with Primary Health Networks, recently established in Australia to increase the efficiency and effectiveness of health services for patients. The third was via NPS MedicineWise’s MedicineInsight program, which collects data from consenting practices across Australia and makes these data available to researchers. We describe each approach including data access requirements and the advantages and challenges of each method. All approaches provide the opportunity to better understand data previously unavailable for research in Australia. The challenge of linking general practice data to other sources, currently being explored for general practice data, is discussed. Finally, we describe some general practice data collections used for research internationally and how these compare to collections available in Australia