ImportantA fi st look s ie tifi su a is eated f o the o igi al autho -supplied summary once the normal NIHR Journals Library peer and editorial review processes are complete. The summary has undergone full peer and editorial review as documented at NIHR Journals Library website and may undergo rewrite during the publication process. The order of authors was correct at editorial sign-off stage.A final version (which has undergone a rigorous copy-edit and proofreading) will publish as part of a fuller account of the research in a forthcoming issue of the Health Services and Delivery Research journal.A ue ies a out this fi st look e sio of the s ie tifi su a should e add essed to the NIHR Journals Library Editorial Office -nihredit@soton.ac.uk. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors have tried to ensure the accuracy of the autho s o k a d ould like to tha k the e ie e s fo thei o st u ti e o e ts however; they do not accept liability for damages or losses arising from material published in this scientific summary.This fi st look s ie tifi su a p ese ts i depe de t esea h fu ded the Natio al Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. Scientific summaryBackground Dementia is a growing health problem internationally. When cure is unlikely imminently, providing good quality and cost-effective care, over a long period of need, will remain a major challenge for health and other care providers. Improving quality of care in general hospitals, living well with dementia in care homes, reducing the use of anti-psychotic medication and improving health outcomes through improving care outcomes are priority policy objectives for dementia.

This paper reports findings drawn from a study of good practice in English social care for disabled adults and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource-intensive needs. The study involved qualitative research with disabled adults and older people with severe and complex needs, family carers and members of specialist organisations (n=67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face-to-face and telephone interviews, Talking Mats© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: 1) everyday support; 2) service organisation; 3) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person-centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets.This approach focusses very much on the role of the individual in directing their own support arrangements. However, participants in this study also stressed the importance of on-going professional support, for example, from a specialist key worker or case manager to coordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from 2 professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield. KeywordsSocial care, disabled people, continuity of care, qualitative research, dementia, service delivery and organisation What is known about this topic The English policy approach to meeting the social care needs of people with severe and complex needs is personalisation using direct payments and personal budgets  Research has begun to identify gaps between the rhetoric of this approach and the reality as experienced by some groups. What this paper adds People with complex needs and their carers value a range of person-centred approaches which include but are not limited to direct payments and personal budgets  Findings highlight the importance of good practice in service organisation, including flexible systems and coordination via case management. Getting it right at this level could be the key to achieving true personalisation for people with severe and complex needs.

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. 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 2 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 pape d a s o T igg s t polog of se i e 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 co-client.

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SummaryThe 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 paper 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 sixteen adult social care departments across two 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. 3 FindingsPractice 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. ApplicationsGreater clarity and consistency is needed, especially the linking of service users' and carers' assessments and finding appropriate ways to meet both. These changes will become increasingly urgent with the implementation of the 2014 Care Act.