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Executive Summary
Aim of the study
1. This study considers the baseline against which the development of the policy of free personal and nursing care in Scotland can be evaluated. It considers a range of statistical data, systematically reviews relevant research on care and support for older people and sets free personal care within the broader policy context.
Policy review
2. Free personal and nursing care were introduced to Scotland at a time of extensive, radical change in policies for older people. Key policies that may have potential influences on the operation of free personal and nursing care were:
- Increased emphasis on care at home;
- Joint Future;
- Care Standards;
- Supporting People;
- Direct Payments;
- Benefits issues including Attendance Allowance and Pension Credit.
The intention of these policies is to improve the assessment process, leading to more effective identification of need and supply of services; to raise standards and expectations of services; and to innovate services delivery through Direct Payments and developing the role of the private and voluntary sectors. These potential changes have yet to be fully realised, and their cost implications are unclear.
3. 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
The balance of care
4. The balance of care is defined as the relative importance of different care settings for older people assessed as needing care and support. In recent years, the balance of care has been changing radically. Changes include:
- Reductions in hospital based geriatric care, supported by new hospital discharge supports, such as rapid response teams;
- Changes in the composition of the sheltered housing supply, involving increasing housing with support, that is specialised housing with social care support closely linked to it;
- An increased emphasis on home care, with reduced client numbers, but more high intensity packages;
- There are increasing numbers of clients seeking personal care. This has resulted in more assessments and increased hours of home care;
- Informal care has a continuing crucial role. The supply of informal care appears not to have reduced as a result of the introduction of FPC
- The balance of care is likely to be affected by housing, technology, staffing and joint working innovations.
Unmet need
5. Unmet need can be defined in a variety of ways. The quantity of unmet need varies with the definition used. Neither the discussion of unmet need by the Care Development Group ( CDG), nor subsequent research, has explored these issues fully.
6. Available survey data are inadequate due to the smallness of samples in general surveys. Further, self-evaluation or evaluation by another family member, which is the approach taken by most surveys, are forms of "felt-need". A professional evaluation of need (described as "normative need") might lead to the conclusion that service provision could not be justified on the basis of the assessment tools (such as SSA- IoRN) that have been adopted to ensure equity of treatment of those requiring care.
7. Indirect analysis of unmet need may be possible using Attendance Allowance ( AA) data, but such analysis would need to be reinforced by a clearer understanding of the reasons why the AA population differs from that which uses local authority social services and why the ratio of AA claimants to local authority clients varies from authority to authority.
8. The wider research literature suggests that unmet need is indeed difficult to research and is rarely directly addressed. However, there is indirect evidence that certain groups do not seek service support despite need and/or they face exclusionary processes which mean their needs are not met. The literature also identifies pressures which may increase unmet need, such as rising expectations and quality standards.
9. Our survey of local authorities showed varying definitions of unmet need, but wide agreement that it had risen since 2001-2002, partly due to free personal care which was perceived to have promoted demand. The survey produced limited data on actual numbers of people waiting for assessments or services, and a sense that local authorities had difficulties responding to such a request for data.
Costs and finance
10. The issues listed in the table below provided a complex backdrop to the financial work of the CDG. It also had to rapidly construct estimates of the future costs of free personal and nursing care. The estimates were derived using the same methodology as that used by the Royal Commission on Long-Term Care (1999), but the evidence needed to construct a robust estimate of future costs was frequently deficient and sometimes absent. With the benefit of hindsight, it is possible to identify those factors which would have led to better estimates of costs. The following table provides a brief summary of the main factors which influenced the CDG cost estimates and of the new information that has subsequently become available:
Issue | Information Available to CDG | Change in Information since CDG Report |
|---|
Demography | 1998 Population Projections. | 2004-based projections from the UK Government Actuary's Department ( GAD) and information from 2001 census. |
Healthy Life Expectancy | A 0. 25 per cent per year reduction in the proportion of the older population requiring services. | More recent data on Long-Term Limiting illness is now available from the Census, the FRS and GHS. However there is insufficient longitudinal data to generate new estimates of changes in healthy life expectancy. |
Informal Care | The amount of informal care which could be substituted by formal care. CDG adopted a figure of 12% based on some of the limited comparative information which was available from related research on this issue from America. | Evidence since the introduction of free personal care does not indicate any significant substitution out of informal care. |
Unmet Need | Estimate of unmet need for personal care services in the community in the range between £15 to £25 million. As with the switch from informal care, the effect was assumed to build up over time. | Some new information from Scottish Household Survey and Scottish House Condition Survey, but no significant improvement in data availability. |
Costs | Assumed 2 per cent year on year real increase in the costs of care (over and above inflation). | This remains a standard (though contested) assumption about future costs growth. |
Change in Asset Holding | Not taken account of in cost estimates. | In 1988, only 47 per cent of the Scottish housing stock was owner-occupied: in 2004, that proportion had increased to 66 per cent. Higher levels of home ownership result in higher costs to the policy, but not necessarily higher costs overall. |
Balance of Care | Key determinant of care costs, but not taken account of in CDG cost estimates. | Limited estimates of the cost implications of changing balance of care undertaken in Range and Capacity Review (2004) and Bell and Bowes (2006). |
Workforce | Key determinant of quality of care and of costs. Not specifically analysed by CGD. | Care assistants grew more rapidly than any other occupation in Scotland 2000-2004. There are now 75,000 care workers employed in Scotland. They are overwhelmingly female, tend to work around 30 hours per week and are paid around £7 per hour. |
11. Further important issues relating to the financing of free personal and nursing and nursing care include:
12. The weekly allowances for personal and nursing care in care homes, which were set in 2002, have not been updated to take into account inflation or changes in the cost of providing personal and nursing care. For care at home, the CDG did not specify allowances and as a result the overall costs of providing care at home are likely to rise as the unit costs of provision increase. The number of care home places can only expand slowly and thus it is not surprising that some element of the balance of funding within local authorities has moved away from care homes and towards care at home. The main driver for increased homecare has, however, been the explicit policy objective moving the balance of care in this direction. The cost estimates produced by the CDG assumed that the costs of personal and nursing care in care homes and in domiciliary care would rise at 2 per cent above the rate of inflation each year.
13. The costs of free personal care were complicated by its interaction with the Supporting People policy which is intended to provide housing support for vulnerable people. The difficulties arose because the boundaries between different categories of care and support were not clear in practice.
14. The incomes of households in which at least one person is receiving local authority care services are similar to those of the general population aged 65 and over, but their assets are below average. Since 2002, local authorities appear to have focused services on poorer clients. One possibility is that the greater publicity associated with the policy has made this group more willing to seek services.
15. Neglected areas in studies of costs include the costs of making assessments, the impact of changing models of care, technology, cross-sectoral working and quality improvement.
Experiences of service users
16. The research record emphasises the importance of considering the views and experiences of service users and informal carers.
17. Older people who comment on services emphasise the importance to them of choice and independence, and that they want services which promote and support these principles. They do not single out personal care as a specific separate category, but see their needs for care and support holistically. This is reflected in recent research on older people's own perceptions of quality of life.
18. Nevertheless, older people and informal carers have been shown to be broadly supportive of free personal care and, particularly, opposed to means testing to ascertain service entitlement. Research has shown that older people are willing to use their own financial resources to maintain independence, but that long term care is not necessarily a priority for expenditure. It has also been shown previously that the general population is supportive of the policy.
19. Service users' reported experiences vary according to ethnicity, locality and socio-economic group.
20. The research on informal carers lacks insight into personal care and peoples views about it, despite indications that this is a particularly sensitive area. It is not clear how people negotiate the difficulties they may find in providing personal care for an intimate partner or a parent. Research in care homes also highlights the fundamental importance of good personal care which preserves people's dignity and respects their wishes. For minority ethnic groups, cultural issues need to be addressed in order for good personal care to be provided. These issues of quality are of fundamental importance for service users.
Conclusions and gaps in the evidence base
21. Policy:
- Free personal care was introduced at a time of extensive, radical change in policies for older people. Whilst the mutual influences of these policy changes are not well understood, they are intended to produce improved assessment processes, raised standards and expectations and innovation in services. The cost implications of these changes are not clear.
- To improve understanding of policy interactions and costs, there is a need for more effective evaluation strategies and better information systems in bodies such as local authorities, health boards and care homes.
22. Demography:
- There are deficiencies in available data on factors explaining increases in the size of the 'oldest old' population in Scotland, trends in household formation and dissolution which may affect the demand for care, and on disabilities in older age.
- More work is needed on the trends and effects of changes in numbers of the 'oldest old' and on identifying improved measures of disability in older age. Potential improvements in current practice could include consistency in age groupings used, a longer time horizon in costs evaluations and joint costing of health and social care for older people.
23. The balance of care:
- Matters requiring further investigation include the relative robustness of the care home sector in Scotland; the impact of innovations in care delivery; the impact of an increasing focus on intensive care packages at home; potential changes in the behaviour of informal carers; and the private market in home care.
- Further research and improved availability of data are needed on the care home market, innovations such as housing with care, which groups are particularly benefiting from increased care provision, potential changes in informal caring and the role of the private and voluntary sectors in care provision.
24. Unmet need:
- Data on unmet need are hard to obtain, partly because of difficulties of definition, and various sets of data produce contradictory results. The link between Attendance Allowance and the demand for personal care from local authorities is poorly understood.
- Clearer definitions of unmet need are required, along with improvements in the relevance of survey data.
25. Finance and costs:
- There is a lack of clarity on how to calculate the costs of free personal and nursing care. This makes both predictions of costs and decisions on what data to collect difficult. Data from different sources are difficult to reconcile, and relating costs and outcomes is problematic. Where good practice exists, there appear to be limits on its dissemination.
- A clear, unambiguous definition of what the costs of the policy of free personal and nursing care comprise is needed. The recording of data on social care needs to be consistent across providers, and use a common framework. Good practice needs to be more effectively disseminated.
26. Experiences and views of service users:
- Whilst there is much research exploring the views of older people and others on service use in general, little of it focuses on personal care or, in particular, on the Scottish policy.
- Particular issues which would merit research include the conduct and effectiveness of consultation exercises; the impact of Direct Payments for older people; the sensitivity of personal care and how it is negotiated; informal carers' choices about care; and the views of the general population about free personal care.
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