Scottish Government

Establishing the Evidence Base for an Evaluation of Free Personal Care in Scotland

This study considers the baseline against which the development of the policy of free nursing and personal 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

Main Findings

• Free personal care was introduced to Scotland at a time of extensive, radical change in policies for older people.
• In recent years the balance of care has been changing radically. Key changes include a reduction in hospital based geriatric care, an increase in the number of home care hours supplied (particularly related to increases in high intensity care packages) and a decline in local authority and voluntary care home places.
• There is a lack of clarity around the definition of unmet need. Local authorities define unmet need in a variety of ways. There is a lack of data relating to unmet need.
• Informal care has a continuing crucial role. The supply of informal care appears not to have reduced as a result of free personal care.
• There is a lack of clarity on how to calculate the costs of free personal care. Data from different sources are different to reconcile, and relating costs and outcomes is problematic.
• Older people, the general population and informal carers are broadly supportive of free personal care and opposed to means testing to ascertain service entitlement. Older people see their needs for care and support holistically and do not single out personal care as a specific separate category.
• There is a need for improved data relating to household formulation, the onset of disability, and the growth in the number of people aged over 85.

Policy Review

Free nursing and personal 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 nursing and personal care were:

• Increased emphasis on care at home
• Joint Future
• Care Standards
• Supporting People
• Direct Payments
• Benefits issues including Attendance Allowance and Pension Credit

It is intended that these policies will lead to improvements in the assessment process, thereby 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.

More recent changes in progress include public pension reform, the establishment of the Commission for Equality and Human Rights, the 21st Century Review of Social Work and the Scottish Parliament's Health Committee Care Inquiry.

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.

The Balance of Care

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.
• 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 free personal care.
• The balance of care is likely to be affected by housing, technology, staffing and joint working innovations.

More work is needed on the trends and effects of changes in numbers of the oldest old'(those aged 85+), trends in household formation and dissolution which may affect the demand for care and on identifying improved measures of disability in older age. Potential improvements could include consistency in data collection, a longer time horizon in costs evaluations and joint costing of health and social care for older people.

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.

Unmet need

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, nor subsequent research, has explored these issues fully.

Available survey data are inadequate due to the smallness of samples in general surveys. Forms of felt need may include self-evaluation or evaluation by another family member. This is the approach taken by most surveys. 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.

Indirect analysis of unmet need may be possible using data on Attendance Allowance ( AA). AA is a tax free benefit for people aged 65 or over who need help with personal care due to physical or mental disability. However, the AA population differs from that which uses local authority social services, and the ratio of AA claimants to local authority clients varies from authority to authority. Use of AA data for the analysis of unmet need would therefore need to be reinforced by a clearer understanding of the reasons for this variation.

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 means their needs are not met. The literature also identifies pressures which may increase unmet need, such as rising expectations and quality standards.

Our survey of local authorities showed varying definitions of unmet need, but a widely held perception across authorities that levels of unmet need had risen since 2001-2002. Survey respondents saw changes in levels of unmet need as 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.

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 the number of people claiming 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.

Costs and finance

The issues listed in the table below provided a complex backdrop to the financial work of the Care Development Group ( CDG). It had to rapidly construct estimates of the future costs of free nursing and personal 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 were the main influences on the CDG cost estimates and of the new information that has subsequently become available:

Further important issues relating to the financing of free nursing and personal and nursing care include the weekly allowances for nursing and personal 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 nursing and personal care. For care at home, the CDG did not specify allowances and as a result these costs are likely to rise as costs 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 nursing and personal care in care homes and in domiciliary care would rise at 2 per cent above the rate of inflation each year.

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 may not be clear in practice.

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.

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.

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 appears 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.

Experiences of Service Users

The research record emphasises the importance of considering the views and experiences of service users and informal carers.

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.

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 that the general population is supportive of the policy.

Service users reported experiences vary according to ethnicity, locality and socio-economic group.

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.

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.

Methods

This study incorporates a policy review, a systematic literature review, a review of relevant quantitative data and a questionnaire survey of Scottish Local Authorities. The systematic review included peer-reviewed and other literature identified using electronic literature sources, websites and other relevant information sources. The review protocol is included in the main report. As well as literature from the systematic review, the policy review drew extensively on documentation published by the Scottish Executive and other relevant bodies. The review of quantitative data examined major datasets and statistical releases including the Scottish House Condition Survey, the Scottish Household Survey, the Family Resources Survey, the British Household Panel Survey and the General Household Survey.

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The report, "Establishing the Evidence Base for an Evaluation of Free Personal Care in Scotland", which is summarised in this research findings is a web only document and is available on the publications pages of the Scottish Executive website at: www.scotland.gov.uk/publications/recent

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