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CHAPTER ONE: INTRODUCTION
1.1 This report discusses the characteristics and experiences of unpaid carers and those in receipt of unpaid care in Scotland, by analysing the Scottish Household Survey from 1999 to 2004. The aim of the report is to provide a clear picture of unpaid carers and identify those groups of carers who are in particular need of support in order to inform the development of Scottish Executive policy on carers. This introductory chapter of the report discusses the policy context and outlines the methodology. The following chapters discuss patterns of unpaid care, characteristics of carers and identify areas where carers may be disadvantaged owing to their caring role.
1.2 The importance of supporting unpaid carers in Scotland has been prioritised since the launch of the Executive's Strategy for Carers in Scotland in 1999 1. The strategy highlighted the vital contribution that unpaid carers make to society, and set out a national commitment to support carers. The introduction of this strategy led to legislative developments in Scotland, such as the Community Care and Health (Scotland) Act 2002 2 and its associated guidance, which highlights the need for carers to be supported and recognised by both the NHS in Scotland and by local authorities. As a result of this Act, unpaid carers have been formally recognised as partners in care provision. The Act also introduced a new right for carers to have a formal and independent assessment of their support needs. There is a general vision in Scotland to move to more integrated health and social care, which will involve further joint working between the NHS, social work, statutory, and voluntary services as set out in The Scottish Executive's report 'Delivering for Health' 3.
1.3 The 21 st Century Social Work Review, Changing Lives 4, states that social work services have to ensure that the service user is the focal point of service delivery, with services becoming more personalised and users having greater control over how they are delivered. The Scottish Executive's response to this review 5 highlighted various actions which will be taken including ensuring that people who use services and their carers have greater choice and involvement in decisions about their own care and the design and delivery of services. This is even more important, given Professor Kerr's Report 'Building a Health Service Fit for the Future' 6 which proposes that over the next 20 years, the focus will be shifted from hospital-based care to preventative, anticipatory care.
1.4 In 2004, Care 21 (a social care innovation unit within the Social Work Services Policy Division of the Scottish Executive) commissioned The Future of Unpaid Care in Scotland 7. The overall aim of this research was to propose recommendations on how unpaid carers could be supported over the next 10 years. The research made a total of 22 recommendations, and indicated that two underlying principles which should be implemented: greater recognition of and respect for unpaid carers as key partners and providers; and the development of a rights based policy framework to support unpaid carers. Essentially, it was argued that unpaid carers should have the right to the same opportunities as others, and that they should be given respect and recognition for the role that they play in society. The research also highlighted areas that require further work such as longitudinal research into the experience of caring and research on how unpaid caring affects employment. It was suggested that the SHS should be further developed to provide more detailed information on the prevalence, intensity, and trends of caring which will assist in the long-term planning of care provision in Scotland. It is against this background that this study is being conducted.
1.5 The Scottish Executive's response to this review 8 identified four early priorities: young carers; respite; carer's health; and carer's training. For example, they stated that initial priorities will be to: integrate and mainstream young carers within current policy and service priorities for children and young people; establish a task group to assess respite provision in Scotland; issue final guidance to NHS Boards on the development of local Carer Information Strategies; and discuss with stakeholders the development of a national 'expert carer' training framework to help improve consistency and share best practice.
Methodology
1.6 The SHS is a continuous survey based on a sample of the general population in private residences in Scotland. The survey has been running since 1999 9, and covers a range of topics that inform policy on Transport, Social Justice, and Housing. It includes a section on caring, which gathers information on which household members require and provide care (and whether this is within or outside the household - See Appendix 2 for a full list of SHS questions relating to caring). Data is collected at both the household and adult level. Most of this report discusses data at the random adult level, to ensure consistency and comparison between sections. As well as examining data from the caring section of the SHS, analysis was conducted on demographic variables. The main analysis consisted of cross tabulations. Logistic regression was also used to determine predictors of adults being carers.
1.7 For the purposes of this research, unpaid carers are defined as individuals who care for a friend, relative, or neighbour without receiving paid income for this caring in addition to income received through the benefits system. In the SHS, carers are identified through the person they care for. Household respondents are asked who in the household, if anyone, needs care owing to a long-term illness or disability (and the data is recorded for up to three household members). Information is then gathered on who provides this care. Thus, it is possible to ascertain who in the household needs care and which household members provide care. Additionally, it is possible to ascertain whether care is provided by someone outwith the household. However, as the questions on caring are largely recipient driven, rather than carer driven, it is not always possible to build up a complete picture of a care givers life.
1.8 It should be noted that given the way the data is collected in the SHS, and given changes to the questionnaire between 1999 and 2004, there are limitations to the characteristics of unpaid carers that can be analysed. There were very minor changes in results between 1999 and 2004, and so the cumulative data is generally used to describe the main results.
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