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Carers and personalisation: what roles do carers play in personalised adult social care? What roles do carers and service users want carer to play?
- Authors:
- MITCHELL Wendy, et al, UNIVERSITY OF YORK. Social Policy Research Unit
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2013
- Pagination:
- 4
- Place of publication:
- London
From January 2011 until December 2012, the Social Policy Research Unit examined how current English adult social care practice balances the interests of service users and family carers, in assessment, planning, on-going management and reviews of personal budgets, particularly when budget-holders have cognitive or communication impairments. A survey of councils in two typical English regions examined senior local authority perspectives, everyday practice by frontline staff and experiences of service users and carers. Although managers and practitioners reported that they informed carers of their rights to separate assessments, there was otherwise little consistency, and practice. There was little evidence that separate carer assessments were routinely conducted or linked to service user assessments, personal budget levels and support plans. However, carers were routinely involved in planning how the service user’s PB would be used. Wider debate is needed, within on-going resource constraints, about delivering support to service users and carers that recognise both their independent aspirations for choice and control and their interdependent relationships. Such debate should inform further (Edited publisher abstract)
Personalisation, personal budgets and family carers. Whose assessment? Whose budget?
- Authors:
- BROOKS Jenni, MITCHELL Wendy, GLENDINNING Caroline
- Journal article citation:
- Journal of Social Work, 17(2), 2017, pp.147-166.
- Publisher:
- Sage
Summary: The policy of personalisation in English adult social care prioritises choice and control by service users over the support they receive. Carers also have rights to assessments and support, but these rights have developed separately, so interdependencies between carers and service users may be overlooked. Moreover, it may be difficult to reconcile these divergent policies in routine practice. This article reports findings from a study examining the roles played by carers in England in the processes of assessment, support planning and management of personal budgets for disabled and older people. The study was conducted between January 2011 and February 2013. It involved a survey of 16 adult social care departments across 2 English regions, and interviews with personalisation and carers lead officers in three local authorities. The Framework approach was used to manage the data, and analysis was done thematically. Findings: Practice was fragmented and inconsistent. Carers were reported to be involved in service users' assessments, and also asked about their willingness and ability to continue caring, but not necessarily about their own needs. Separate carers' assessments were reported to be usually offered, but take-up was low and lead officers' opinions about their value varied. Any help given by carers reduced the level of service users' personal budgets, but there was no evidence that carers' own needs (as identified in carers' assessments) were taken into account. Applications: Greater clarity and consistency is needed, especially the linking of service users' and carers' (Publisher abstract)
Allocating personal budgets/grants to carers
- Authors:
- MITCHELL Wendy, GLENDINNING Caroline
- Journal article citation:
- Journal of Social Work, 17(6), 2017, pp.695-714.
- Publisher:
- Sage
Summary: English policy and practice guidance recommends local authorities offer personal budgets to all adults eligible for social care support using transparent and equitable allocation systems which maximise choice and control for users. This includes family and other unpaid carers as carers in England are entitled to their own personal budget. The Care Act 2014 strengthens carers’ rights and places duties on authorities to assess and meet carers eligible support needs. However, little is known about how authorities assess and allocate resources to carers. This article explores this information gap drawing on data from a survey of English local authorities in two regions completed by carers lead officers and complemented by follow-up telephone interviews with a sub-sample of these officers.Findings: Survey and interview results demonstrate wide practice variations around how social workers assess, calculate and distribute resources to carers. There is little uniformity across authorities. Carer eligibility criteria are used but thresholds vary and are often unclear. Most grants/personal budgets are allocated as single annual payments but how the level of these grant/personal budgets are calculated varies with little standardisation. Applications: The article develops the evidence base surrounding resource allocation to carers through carer grants/personal budgets. Findings are timely as the Care Act 2014 will strengthen carers’ rights alongside the continuing personalisation of adult social care. Discussing local authority policy and practice around key objectives of equity, transparency (Publisher abstract)
Carers, choice and personalisation: what do we know?
- Authors:
- LARKIN Mary, MITCHELL Wendy
- Journal article citation:
- Social Policy and Society, 15(2), 2016, pp.189-205.
- Publisher:
- Cambridge University Press
Despite the long-term strategic shift to personalisation, with its emphasis on choice and control for those who use public services, there has been relatively little policy consideration of family carers’ choice within personalisation. The relationship between carers and personalisation also remains under-researched. This article is based on a review of existing knowledge around personalisation. It shows that carer choice is highly complex, not least because of the multifaceted and paradoxical nature of the concept of choice itself. The review demonstrates that choice for carers within personalisation is no less complex and is subject to new and overlapping variables which do not necessarily lead to improved choice for carers. In light of the limited empirical evidence about carers, choice and personalisation, the introduction of the Care Act 2014, and the importance of frontline practice in securing choice for carers, recommendations are made for future research and social work policy and practice. (Publisher abstract)
Carers' roles in personal budgets: tensions and dilemmas in front line practice
- Authors:
- MITCHELL Wendy, BROOKS Jenni, GLENDINNING Caroline
- Journal article citation:
- British Journal of Social Work, 45(5), 2015, pp.1433-1450.
- Publisher:
- Oxford University Press
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. (Publisher abstract)
Ambiguity in practice? carers' roles in personalised social care in England
- Authors:
- GLENDINNING Caroline, MITCHELL Wendy, BROOKS Jenni
- Journal article citation:
- Health and Social Care in the Community, 23(1), 2015, pp.23-32.
- Publisher:
- Wiley
Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles – desired and actual – played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions – interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats© were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client. (Publisher abstract)
Care and support needs of children and young people with cancer and leukaemia and their families: appendices
- Authors:
- CLARKE Susan, MITCHELL Wendy, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2004
- Pagination:
- 188p.
- Place of publication:
- York
The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s views of their needs, and develop recommendations for the voluntary sector’s provision of services. The appendices contain supplementary materials and mewthodologies of the research.
Care and support needs of children and young people with cancer and leukaemia and their families
- Authors:
- CLARKE Susan, MITCHELL Wendy, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2004
- Pagination:
- 113p.
- Place of publication:
- York
The diagnosis and treatment of cancer or leukaemia in a child presents a considerable challenge to families. While major advances have been made in the treatment of childhood cancer, with survival rates now exceeding 60 per cent, evaluation of psychosocial support is less developed. High levels of parental emotional distress have been found in a number of studies at the early stage of diagnosis and treatment, and for some families distress has been shown to persist over subsequent years, even when active treatment has ended and the child is in remission. Similarly, the emotional impact of the disease on children can also persist over a number of years. The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s views of their needs, and develop recommendations for the voluntary sector’s provision of services.
Information that informs rather than alienates families with disabled children developing a model of good practice
- Authors:
- MITCHELL Wendy, SLOPER Patricia
- Journal article citation:
- Health and Social Care in the Community, 10(2), March 2002, pp.74-81.
- Publisher:
- Wiley
The provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. This article looks at how parents would like to receive this information and also discusses the empowering potential of user-friendly information. The article draws on data collected from a focus group discussions with parents caring for children with a range of disabilities or chronic illness. In particular it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive.
Leaving school special: the next step and future aspirations
- Author:
- MITCHELL Wendy
- Journal article citation:
- Disability and Society, 14(6), November 1999, pp.753-769.
- Publisher:
- Taylor and Francis
This paper focuses upon the transition experiences of disabled young people, a group frequently hidden within discussions of 'youth'. It initially discusses young people's next educational/vocational step after school leaving in relation to the traditional idea of a school to work transition. Taking a broader approach the paper then focuses on the complex concept of a more independent 'adult' status from the perspective of the study's young people and their parents/carers.