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Chapter Eight Gaps in the Evidence Base
8.1 This research project has assembled the baseline evidence relating to the policy of free personal and nursing care. It has also reviewed developments since the policy was introduced and, by reviewing relevant literature, set the policy in the appropriate context against which to consider its subsequent development. This research has also assembled and discussed relevant statistical data, especially that which influenced the CDG in coming to its conclusions about the desirability of introducing Free Personal Care. It also surveyed local authorities to try to understand costs and charges relating to the social care of older people, albeit with limited success. The research outcomes include a number of important conclusions relating to the implementation and operation of free personal and nursing care, as well as the highlighting of important gaps in the evidence base. In this final chapter, we summarise the gaps that we have found and make some recommendations as to how the evidence gaps might be bridged.
Policy review
8.2 Many changes in social care policy took place around the time that free personal and nursing care were introduced. These changes complicate any policy evaluation exercise.
8.3 Key policies that may have potential influences on the operation of free personal and nursing care include: increased emphasis on care at home, Joint Future, Care Standards, Supporting People, Direct Payments and Benefits issues including Attendance Allowance and Pension Credit.
8.4 The intended impact of these policies is improvement in the assessment process, leading to more effective identification of need and supply of services; raised standards and expectations of services; and innovations in delivery of services through Direct Payments and the developing role of the private and voluntary sectors. These objectives have yet to be fully realised, and the cost implications of intended and unintended interactions with free personal and nursing care are unclear.
8.5 More recent changes in progress include public pension reform, the establishment of the Commission for Equality and Human Rights, the 21 st Century Review of Social Work and the Scottish Parliament's Health Committee Care Inquiry. The potential impact of these is not yet clear
Suggestions for improvements
8.6 Examination of evaluation strategies from an early stage in policy design. The literature on policy evaluation (see e.g.DWP 2001) emphasises the difficulties of evaluating policies in such a context because of the problems of identifying an appropriate counterfactual. One appealing, though not ideal, methodology is the 'difference-in-difference' approach. There are clearly opportunities to apply such methodology since both England and Wales experienced similar, though not identical policy developments in the pre and post-policy periods. In other words, one can compare relative experience in England and Wales compared with Scotland to more closely calibrate policy effects than one could do by simply examining trends in Scotland in isolation.
8.7 Ensuring that information systems in relevant bodies, such as local authorities, health boards and care homes, are 'fit for purpose', in the sense of being able to provide the information necessary for policy evaluation.
Demography
Gaps and weakness in the demographic data
8.8 The discussion of the demographic and healthy life expectancy literature suggests that there are significant gaps in the data, including:
- The factors that might explain why there has been sharp increases in the size of the 'oldest old' population in Scotland
- Understanding trends in household formation and dissolution among older people and consequent effects on the demand for care
- A very significant gap in the calibration of disability among older people in the Scottish population which is caused by inadequate samples, poor sample design and reliance on self-evaluation of disability in existing surveys
Suggestions for improvements
8.9 Working with GROS to identify trends and effects of changes in numbers of 'oldest old'. It is also important to understand how healthy this group are likely to be and their consequent demand for social care. There is now an extensive international literature on this issue.
8.10 Convening a group to look into establishing reliable measures of disability among older people, perhaps building on the analysis contained in the Wanless Review of social care in England (Wanless 2006).
8.11 In future forecasts of the costs of social care, the Executive could consider:
- Using a consistent set of age groups in such exercises;
- Evaluating costs over a longer time horizon since this is an area where current decisions can have impacts into the distant future;
- Jointly costing health and social care for older people. This would give a consistent framework in which to analyse how the future costs of care might be influenced by changes in the boundary between social care and health care. It would also help provide a clear picture of how Executive spending is distributed across different age groups.
Balance of care
Gaps and weakness in the information on the balance of care
8.12 The reasons why the care home sector in Scotland appears to be more robust than that in England are not well understood.
8.13 Innovative forms of care, such as extra-care, may become increasingly important in the future, and few data are available which would allow their impact to be analysed.
8.14 It is important to form a better understanding of the implications of reducing the provision of low-level care packages, while at the same time substantially increasing the number of hours of care devoted to intensive packages of care at home.
8.15 The data suggest that there have been overall increases in care provided and potential benefits for informal carers.
8.16 Informal carers supply considerably more hours of care than does the formal care sector. There is a need to understand the finding that there has been no drop in informal care following the introduction of free personal and nursing care. It may be the case that informal carers are substituting different forms of caring for personal care. It may also be the case that the switch in the balance of care towards care at home has provided more opportunities for care at home. At present, there is no evidence on how informal carers' behaviour has been modified.
8.17 The evidence on private purchases of home care from private providers is extremely sparse. The data have not improved since the CDG report, even though estimates of charges in private homecare were an integral part of the estimates of the costs of the policy. The importance of privately supplied home care has grown massively in England in recent years, but not in Scotland.
Suggestions for improvements
8.18 There is a strong argument for further research on the care home market in Scotland.
8.19 It is important that data about innovative forms of care such as extra care housing are quickly incorporated within the framework of community care statistics.
8.20 It is important to understand which groups are particularly benefiting from increased provision and how. For example, people with dementia, informal carers and clients receiving the increased volumes of overnight and weekend provision of care may all have experienced particular benefit.
8.21 There is a need to better understand informal caring and potential changes which may be occurring.
8.22 There is a need to better understand what factors inhibit the growth of private and voluntary sector care provision in Scotland relative to England. This can only be done if there are better data available on this sector.
Unmet need
Gaps and weakness in the data on unmet need
8.23 There is a need to be clear about what precisely is meant by unmet need.
8.24 Lack of choice has an important bearing on unmet need.
8.25 Unmet need was an integral part of the CDG costing, but existing estimates of unmet need are based on poor quality data. Different approaches to unmet need yield contradictory results.
8.26 The link between benefit payments associated with personal care - for example, Attendance Allowance - and the demand for personal care from local authority social services is also poorly understood. This is true not just in Scotland but throughout the UK.
Suggestions for improvements
8.27 Clarify the definition of unmet need relevant to the policy of free personal care.
8.28 Consider how existing survey information could be improved to identify this form of unmet need.
8.29 Investigate the forms of service being purchased by or given to those receiving Attendance Allowance but not local authority support.
8.30 Enhanced client choice is a key policy objective. Investigation of the extent to which choice constraints limit user satisfaction or uptake of services.
Finance and costs
Gaps and weakness in data on finance and costs
8.31 There is a lack of clarity over the basis on which to calculate the costs of free personal and nursing care, leading to:
- uncertainty over how to project future costs;
- uncertainty over how to collect and interpret data relating to free personal and nursing care.
8.32 Data come from several different sources on the costs of care, including Audit Scotland, local authorities' financial statements and the Scottish Executive. There are difficulties in reconciling data from different sources. In particular, there is difficulty in explaining why local authority social care budgets have been increasing since 2001.
8.33 Little information is available which would allow linkage of costs to outcomes so that one could develop some framework for measuring productivity in this sector.
8.34 It is notable that many of the examples of high quality services are described in a range of contexts, such as academic research literature and less formal "grey literature" whose circulation is unclear. Similarly, lessons from services which have fallen short are widely dispersed in the literature. Kydd (2002, 2004, Kydd and McDonagh 2004) describes an initiative at the University of Paisley which brought academic researchers and clinicians together in regular forums to share and discuss good practice in research and service delivery - but such attempts to disseminate research findings and to identify and share good practice lessons are little reported in the literature.
Suggestions for improvements
8.35 It is essential that there is a clear unambiguous definition of what the costs of the policy of free personal and nursing care comprise. There is a particular difficulty in understanding these costs in relation to home care which is now substantially larger, in expenditure terms, than the care home sector.
8.36 Advance the initiative detailed in the Social Work Information Review Group (2000) Review of Local and National Information Requirements for Social Work in Scotland to ensure a common framework for local authorities to record data in relation to social care. Data collection strategies should be sufficiently flexible to accommodate innovation in care provision such as housing with care, evercare models and the use of technology in new models of service delivery.
8.37 There is a need for a particular piece of research to explain the increase in expenditure of over £0.5bn in social care expenditure between 2000 and 2004 and how far this relates to different policy initiatives, including the cost of free personal and nursing care.
8.38 Improvements are needed in the dissemination of good practice lessons, potentially drawing on the model of the Paisley forum.
Experiences and views of service users
Gaps and weaknesses in the data on experiences and views of service users:
8.39 Whilst there is a significant body of work which looks at the views and experiences of older people and service use generally, there is very little work focused on personal care and in particular on the Scottish policy of free personal care.
Suggestions for improvements:
8.40 Particular issues relevant to the delivery of the policy of free personal care which would merit further investigation are:
- The conduct and effectiveness of consultation exercises, particularly whether older people are genuinely included;
- Whether Direct Payments can improve older people's experiences of care, including personal care;
- The sensitivities surrounding personal care;
- The role of informal carers and their choices about care;
- Wider views about free personal care, especially those of new generations.
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