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a Social Policy Research Unit, University of York, United Kingdom
Hazel Qureshi, Social Policy Research Unit, University of York, York Y010 5DD, United Kingdom E-mail: HJQ2{at}York.ac.uk.
THIS article will review relationships between policy, practice, and research in social care and health services for older people in the United Kingdom over the past 25 years. First, it is important to acknowledge that these relationships are played out in a wider context of social and economic change within which there are enduring, as well as more transient, issues that impact on attempts to change, or implement, policy or practice. Before turning to the more detailed policy history, I will briefly explore the bigger picture and set out a general perspective on relationships between research, policy, and practice.
Demographic, economic, and social factors influence the political prominence of the issue of services for older people and the level and type of resources available to tackle problems. Projected substantial increases in the numbers of people aged older than 75 and 85 years combined with age-related morbidity are undoubtedly factors that keep older people on the agenda of policy makers. Currently, services for older people represent 40% of the (National Health Service; NHS) budget and just under 50% of the social care budget (spent through local authorities) (1). Broader factors that affect the demand for and the supply of assistance are not necessarily amenable to control by policy makers. Wider economic factors constrain total state spending, as well as affecting the resources available to individuals and their families to purchase assistance in old age. Changing patterns of employment affect not only retirement and pension arrangements, but also, for example, the availability of informal care, and the character of local labor markets that provide many formal care workers. Social changes are important, too: increases in divorce and remarriage and increases in the number of children born outside marriage mean a growth in reconstituted families. Children may have several parent and grandparent figures, and family obligations—already complicated—will become less clear-cut and more difficult to negotiate (2). Cultural diversity means differing relationships and expectations within extended families. Service systems will have to adjust and keep changing.
Two enduring issues have continued to be contested through the past 20 years of policy and practice. These are (i) the appropriate balance of responsibilities between the individual, families, the state, and the market; and (ii) the tension between central control and local discretion. In relation to the first of the above, the state is probably too broad a term. The overview of history will show conflict about responsibilities between different statutory agencies, most notably, but by no means solely, those providing health and social care. Tension between central control and local discretion occurs at macro and micro levels. At the national level, there is a tension between the desire of central government to ensure consistency and conformity with their aims and the belief that many decisions are best devolved to a local level. This tension has its micro counterpart in the longstanding struggle between managerial control and professional discretion that we have seen being played out in both health and social care services in the United Kingdom.
In summary, some of the policy drivers during this period were (i) concerns about funding long-term care, (ii) ideology (beliefs about the appropriate balance of responsibilities, as above, and the best way to achieve policy ends), (iii) scandals and the emergence of various pressure groups, and (iv) research?
As will be described, the funding issue is, and has remained, central, although beliefs about how it could, or should, be solved have varied. Pressure groups and scandals have focused attention on particular issues at various times.
Three recent scandals illustrate their relevance to policy and practice:
The Bristol scandal related to surgeons who continued to perform heart operations on children when their record of failure clearly indicated that they did not have competence to do so. This raised many issues about professional versus patient power, but also about power within the medical profession and the control that central bodies should exercise over professional activities. (3)
The Shipman scandal concerned a case in which a British general practitioner murdered large numbers of his older patients, and, despite local concerns, the death rates among his patients were not queried until he was caught attempting to alter a patient's will in his favor. Monitoring systems did ensure he was quizzed about his excessive use of certain drugs, but missed the high death rates. This again has raised issues about managerial control over professional activity. (4)
The Alder Hey scandal was a case in which body parts were removed from large numbers of deceased children without their parents' consent or knowledge, and then stored, ostensibly for research, in a hospital basement. This case raised many issues about public and service-user influence and power in relation to research and has given considerable impetus to the drive to ensure ethical approaches, with more consumer influence, in health and social care research. (5)
Scandals can be a mixed blessing. They can provide an impetus for much needed change, but at other times, the wish to avoid future risks can lead to an overbureaucratic response that inhibits practice. Pressure groups apply a more consistent, and possibly more rational, force for change in the interests of their members. Organizations of disabled people, and of family carers, have been successful in campaigning for legislative change across this period.
There is a question mark by research as a policy driver because the relationship between research and policy is complex and variable. There is a rationalist model of policy making in which problems are identified, options for solution are assessed in relation to their costs and consequences, and an optimum choice is made in relation to overall objectives. As Martin Bulmer observed, "This model has an intuitive appeal to social scientists who get involved in advising policy makers because it elevates reason and its knowledge base to centre stage" ((6), p. 6). However, scepticism has been expressed. As the economist Maynard Keynes famously observed, "There is nothing a Government hates more than to be well-informed, for it makes the process of arriving at decisions so much more complicated and difficult" ((7), p. 217). I recognize the accuracy of Bulmer's description of policy making as a process of adjustment between competing pressures exercized through the political process. Important activities are therefore actions for control or influence such as bargaining, negotiation, or voting. Knowledge is not entirely discounted as an influence in this scenario: It is a source of power, particularly as there is a normative attachment to the rationalist model, that is, people believe that they should act on evidence and have a rational basis for decisions.
The relationship between research and practice has been increasingly recognized as problematic. Ensuring action is based on research is not simply a matter of getting messages across. It may be that people do not know about findings relevant to their work, and so accessible dissemination may help, but, often, considerable behavioral and organizational change may be necessary to implement findings. Nor is it useful to conceive of the appropriate direction of influence as one-way only. Certainly in the United Kingdom, practitioners and managers often complain that research is irrelevant to their concerns or not firmly based in their realities. This lends importance to finding ways in which first, the concerns of frontline practice can influence the research agenda, and, second, practitioners and researchers can work in partnership both in doing research and in planning consequent action.
Recognizing that research/policy/practice relationships are complex and variable, I will now sketch out a history of changes in policy and services for older people over the past 20 years. I will refer to research in which I, and sometimes others, have been involved over that period to illustrate some of the differing aspects of the role of research.
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Changes in Policy and Services for Older People in the 1980s and 1990s |
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The 1980s in the United Kingdom was the decade in which the cost of residential care for older people threatened to spiral out of control. The process began almost by accident. In 1979 the new conservative government was attempting to reduce the amount of discretion in the Social Security system. A little-used discretionary power to provide financial support for older people of limited means, who were in residential care, was, unwittingly it seems, turned into an entitlement. Older people were enabled to enter residential care and receive financial support without any assessment of their need for a residential service. As Lewis and Glennerster put it, "The social security system had inadvertently come to the rescue of families, local authorities and the NHS" ((9), p. 4). The results, as the Audit Commission cogently pointed out toward the end of the decade (10), were perverse incentives to enter residential care and a failure to develop viable alternative community-based services, not to mention exponentially rising costs to the public purse. The cost to the social security budget rose from £6 million in 1978 to £1.3 billion in 1991, and an explosion in the provision of private residential care followed. The number of private residential homes in the United Kingdom rose from 2,255 in 1979 to 7,240 in 1986, an annual increase of over 18% (11). The existing considerable regional variations in the prominence of the independent sector were exacerbated in residential and nursing home care. These variations depended on: (i) the strength of local authority ideological commitment to public provision in-house, (ii) existing labor markets and local demand, and (iii) sociodemographic characteristics of areas (e.g., resort and retirement areas had high provision of residential and nursing home facilities).
At the beginning of the 1980s, ministers looking for cost savings had expressed high hopes of extending care by the community. In 1980 the Secretary of State for Social Services said, "The personal social services provide only a small part of the totality of care in the community... When one is comparing where one can make savings ... in personal social services there is a substantial possibility and, indeed, probability of continuing growth in the amount of voluntary care, of neighbourhood care, of self-help" ((12), p. 100). Research on informal care helped to indicate the limitations of this reasoning. By the end of the 1980s, researchers' improved understanding of informal care by kin, and the conditions under which it was given, made it clear, as Julia Twigg observed, that such care was "an essentially uncommandable resource" ((13), p. 56), and that generating increases in the supply of informal care was not a solution. The issue of support for carers was firmly on the agenda, although the government's sympathies were clearly with emerging carers' organizations (who sought support for carers) rather than the arguments of feminists (who favored alternatives to family care) (14)(15).
In addition to research on carers, the 1980s also saw the publication of the results of some effectiveness research, in particular the Kent community care experiment in which case managers used devolved budgets to support older people on the margin of need for residential care, with better results than conventional services, at no higher cost (16). At the same time, concerns were being expressed about the quality of conventional social care services in the community (17). Key issues for policy and research in the 1980s thus were: (i) the soaring cost of residential care to the social security budget, (ii) the emergence of "carers" as an issue, and (iii) concerns about quality in local authority community and residential services.
At the end of the 1980s, it was eminently clear the government had to act to address these issues. The numbers entering residential care had to be reduced. The case management approach offered hope that community-based services could improve in quality and help reduce the need for admissions to residential care, while still offering a cheaper alternative than residential care for most people.
In 1990 the NHS and Community Care Act was passed. Its aims with regard to social care were: (i) reduce the costs of residential care, (ii) introduce market principles into social care, and (iii) improve practice in community-based services. Primarily this was to be achieved by transferring responsibility for paying for residential care to local authorities, introducing assessment by social services staff as a way of gate-keeping entry into residential care, and insisting that a large proportion of transitional transfers of money from social security to local authorities had to be spent in the private sector rather than on in-house services. This fitted with Conservative ideology of encouraging private sector provision, indeed the Conservatives wanted to see a split between purchasing and providing services that would substantially reduce the public role in service provision. It also to some extent protected the independent sector of residential care from the consequent downturn in demand. Assessment and care management were introduced in the name of good practice, and the Kent experiment was cited in support of this (18). However, neither devolved budgets nor targeting on people on the margin of need for residential care were introduced, so the extent to which research results were in reality being applied was limited. In practice, the emphasis in the new care management was often almost entirely on assessment, with little of the longer-term intensive involvement with older people that was a feature of the case management experiments.
The changes required were so extensive that full implementation did not occur until 1993. Through the 1990s, much research focused on the implementation of new arrangements—had assessment been introduced, were social care markets being developed and what influenced variability, and were savings being made? These were the questions to which policy makers sought answers (19). Research was criticized for lack of focus on outcomes for service users and carers. Little social care research in the United Kingdom looked at effectiveness. Managers and practitioners struggled with new, unfamiliar concepts and with the dissonance between their commitment to improve practice through introducing needs-led assessment and their experience of a system that seemed to be primarily finance-driven (20). Many argued that the scope for using more traditional social work skills in support of older people and their families was seriously diminished.
Through the 1990s, the boundaries between health and social care were progressively redrawn. While there were some better packages of care for older people in the community with higher levels of need, the concentration on assessment and on people with the highest levels of need meant a neglect of case review and lack of attention to prevention. Social needs lost out to the meeting of physical needs as social care services were expected to assist larger numbers of people with higher dependency levels, and parallel cost reduction pressures in the NHS led to discharge "quicker and sicker" from hospital to community or residential services.
The use of social services assessment in gate-keeping did work to stem the flow of older people into residential care (9). Through the 1990s, the private sector began to feel the pressure as fewer customers were referred to them, and fees were held down by local authorities. Smaller homes faced the more severe financial problems, probably as it was more difficult for them to carry vacancies. As the authors of one study observed, "The residential sector has, over the past two decades, experienced inconsistent policies... In the 1980s it received the carrot and in the 1990s it has received the stick, arguably both to excess" ((11), p. 76).
The expansion of places in private nursing homes had proceeded so rapidly that, from being a minority provision in the 1970s, by 1990 they outnumbered NHS continuing care beds by two to one. In reviewing trends through the 1980s and 1990s, the British Geriatrics Society (a professional organization that includes many geriatricians) observed that the NHS continuing care provision contracted in an unplanned and uncoordinated fashion, and that the role of geriatricians in gate-keeping access to medically supervised continuing care was considerably undermined, arousing concerns about inappropriate or precipitate nursing home admissions for those who might have benefited from specialist geriatric assessment and interventions. At the same time, there was strong professional concern that opportunities were being missed to improve the mental and physical health and functioning of people in residential and nursing homes, thus risking a return to the conditions of unmet need that had first inspired Marjorie Warren, a pioneer of geriatric medicine in the United Kingdom in the 1940s. Evidence suggested that geriatricians were spending progressively more time in general medicine and less in geriatrics, and it was argued that performance indicators based on completed episodes and lengths of stay in the hospital were a disincentive to good rehabilitation practice in the hospital (21).
In a 1997 report, the Audit Commission concluded there was too little investment in preventative and rehabilitative services, leading to unplanned admissions of older people to the hospital, and, in turn, premature admissions to long-term residential care. Emergency admissions were rising unacceptably. They recommended breaking into this vicious circle through investment in prevention and rehabilitation (22).
Pressure groups and voluntary organizations had some successes in achieving policy changes in the 1990s. In 1995, informal carers gained the right to ask for a separate assessment of their needs, although this was achieved through the introduction of a Private Member's Bill rather than as an act of government policy. The disabled people's movement emerged, and, partly as a result of their campaigns, local authorities were enabled to offer direct payments to disabled people of working age as an alternative to services (but not, at that time, to older people).
In 1997, a Labour Party government was elected after 18 years of Conservative Party government. A key contrasting feature of the new policy context was espousal of the third way—a route to be steered between the worst excesses of the market and of state-run bureaucratic systems—coupled with an expressed commitment to pursue policy ends rather than ideologically valued means. An intention to seek integrated approaches to multidimensional problems was embodied in the phrase joined-up thinking, and a program of modernization of key public institutions was commenced. Modernization involved: (i) increasing citizen and service user influence through, for example, organizational restructuring and compulsory surveys of satisfaction that fed into performance indicators; and (ii) ensuring best value, or best available quality, through increased regulation, performance review, and inspection, as well as compulsory local reviews of services. The modernization agenda has affected the NHS, local government, and social services. In fact, agencies have been hit by a wall of change but protests about the pace of change have received an unsympathetic response from government. It is too early to say the results of all these changes, but I will outline some of the changes to illustrate how the enduring issues are being approached.
First, the funding problem: The new government set up a Royal Commission on the funding of long-term care for older people. This recommended (but not unanimously) that personal care should be free (previously, social services had to make means-tested charges) (23). The government rejected this recommendation, saying that although there was enough money to pay for this they thought it best to spend it in other ways (24). This remains a hotly contested issue. Indeed, devolution of powers means that Scotland has decided to implement this recommendation despite the government's view (25). A recent TV poll placed free care for older people at the top of the public's list of priorities for the Health Service. (It has to be noted that this option received 150,000 votes, which sadly does not compare with the two million plus votes cast in recent voting for a TV pop idol. Public interest in services for older people is not what those of us committed to this area of work might hope.)
In addition, a whole range of new statutory and quasi-independent bodies have been set up designed to address long-recognized problems in social care. Many of these mirror equivalent bodies with responsibilities for quality in health care. A National Care Standards Commission (NCSC) has been established. This is a statutory body whose role is to regulate and set minimum standards for social care and private and voluntary health care services throughout England (26). This latter body became fully operational in April 2002, and on April 18 a ministerial announcement was made that indicated a major reorganization of regulatory bodies, which seems to imply that it will not exist in its present form for very long—separate Commissions for Healthcare Audit and Inspection and Social Care Inspection are now proposed. It was clear from the NCSC Web site that this announcement took them by surprise. A General Social Services Council has been established to register and regulate social care workers (27). A Social Care Institute for Excellence was established in 2001 with a brief to review and synthesize knowledge in social care (28). In health care, the National Institute for Clinical Excellence was established in 1999, and the NHS Centre for Reviews and Dissemination was established in 1994. Social care is following this trend, although the grounds for making judgments about the quality of knowledge seem at present more contested in social care.
Large numbers of satisfaction surveys have been undertaken in local authorities, but much data is of poor quality. Response rates to general surveys are poor, and there is every reason to expect even lower response rates among users of social care services, particularly given that the method of choice is postal survey. It is difficult to ensure that samples from local surveys in different areas are comparable, and tension remains between a national desire for structured comparable information, and a local wish for open-ended more diagnostic information that would assist in identifying changes needed (29). Extensive surveys of NHS patients are underway.
Performance Assessment Frameworks for NHS and Social Care have been devised and league tables of performance for NHS trusts, hospitals, and local authorities have been published (30)(31). There has been much criticism of performance indicators for not being outcome focused or relating very obviously to performance. There have been interesting studies of the influences of performance indicators on managerial behavior that illustrate that change in the direction of improved quality is not always the result (32). However, even information on inputs can raise important questions: For example, in 2000–2001 unit costs of residential and nursing care for older people were half those for people with learning disabilities (33).
A National Carers Strategy was published in 1999 (34). The Carers and Disabled Children Act 2000 gave carers extended rights to ask for assessment and to receive services in their own right. A special grant was made available to local authorities to develop breaks for carers.
As part of the implementation of the Government's Plan for the NHS, a National Service Framework for Older People (NSF) (1) has been published, which sets out a strategy for achieving eight standards relating to:
The NSF is very explicit about its evidence base. It cites 369 references, all classified by a typology that indicates the nature of the evidence. If it is implemented, the differences for the health of older people should be substantial. The largest investment of resources is in intermediate care, which is defined as:
a short period (normally no longer than six weeks) of intensive rehabilitation and treatment to enable patients to return home following hospitalisation, or to prevent admission to long term residential care, or intensive care at home to prevent unnecessary hospital admission. ((1), p. 156)
There is very little evidence cited as underpinning the commitment to providing intermediate care, particularly for a specific 6-week period, rather it is put forward as a solution to a recognized problem. As this article has indicated, there is plenty of evidence that there is a problem. Some evaluation is planned. Undoubtedly, there has been a shortfall in access to rehabilitation for older people and so an improvement here is to be welcomed. However, there is a risk that currently expectations are too high of the proportion of older people likely to benefit, especially to the extent that reduced services are required in the longer term. This reservation flows from the work in the Social Policy Research Unit (SPRU) on social care outcomes that suggests that a majority of social care services are given in a context where at best stability but more likely deterioration in the older person's health or functioning is to be expected, and the challenge is to maintain quality of life for the person and their family in the face of this deterioration, rather than to bring about health improvement (35). Evidence from other studies also suggests less than 20% of older people receiving social care are in a situation where health improves over a year of receiving services (36). Of course, these figures may be depressed by past low levels of access to rehabilitation. However, recognition of the importance of outcomes other than health improvement remains important if service effectiveness is to be judged on the basis of outcomes.
The third way as envisaged in government policy documents on social care is intended to shift the focus from the concerns of the 1990s with means of delivery and organizational arrangements, seen as ends in themselves, toward the ultimate aims of care:
Our third way for social care moves the focus away from who provides the care, and places it firmly on the quality of services experienced by, and outcomes achieved for, individuals and their carers and families. (37)
In new guidance on single assessment processes for health and social care, there is an emphasis on clear specification of intended outcomes in care plans. This emphasis is repeated in many policy documents. However, despite this continuing rhetorical emphasis, precise meanings for the concept are not spelled out. Tools suggested to assist assessment are mostly structured measures of physical, cognitive, social, and emotional functioning, designed, in my view, with more of an eye to consistent measurement than as a basis for consequent action. In many of these tools, there is a box somewhere in which outcomes to be aimed for are meant to be specified. However, there is no supporting documentation that indicates what is meant by this, or what would constitute an appropriate record (38).
Health outcomes frameworks involving measurement before and after intervention have undoubtedly been useful for comparative evaluation of different treatments, even though there have been justified criticisms that there has been insufficient consumer influence on the choice of outcomes to measure. There is now a Consumers in NHS Research Support Unit funded by the NHS that promotes user involvement in research (39). There has been work involving, for example, cancer patients in deciding appropriate outcomes for randomized controlled trials. Not surprisingly, patients focus less than physicians on survival rates alone and more on broader quality of life issues.
Introducing an outcome focus in social care involves more than simply translating models suitable for acute health care across into a different context. In social care the aim may be to keep things the same rather than change them; there may be no end-points to intervention; and the process of service delivery may be as important an influence on user satisfaction as the outcome. Over the last 5 years, researchers in the SPRU have explored stakeholders' concepts of social care outcomes for older people and have worked with agencies and practitioners to see how these could be usefully incorporated into practice in care management and user surveys (40). Their consultations with older service users and staff, combined with the review of literature on user views led to the following conclusion:
Effective services from the perspective of older people are those which: directly maintain, or remove barriers to achieving, quality of life (specifically: keeping clean and comfortable, living in a clean and orderly environment, being safe, having access to social contact and company, being able to keep active and alert, and having control over one's life), and which do so in a way which ensures that people are treated as fellow citizens with respect for their individual priorities and circumstances. ((41), p. 13)
In the excitement, and pain, of extensive organizational and policy change, busy managers and professionals can too easily be distracted from the perspectives of older people. In SPRU, researchers have worked collaboratively with care managers to try and ensure that care planning is focused around the achievement of outcomes of this kind, pitched at a level that is realistic in light of constraints imposed by resource limitations. Being clear about outcomes and ensuring that they are an integral part of thinking in routine practice seem to SPRU researchers to be essential prior steps before attempting to measure and aggregate routine information to assess outcomes achieved.
I see a tension currently between standardization of services in the quest for quality, and individualization of services so that they reflect personal values and preferences (42). Central control of home care workers so that they behave consistently and in accordance with prior instructions can militate against responsiveness to individuals and the development of personalized relationships that many older people want. Of course, a balance must be struck, but in the United Kingdom there is a danger of moving too far in the direction of control and standardization.
In my view, there is currently too great a focus on an aspiration to measure outcomes in routine practice with an accuracy and reliability that has little point outside a scientific context where one would have comparative data from control groups or population studies. For research to be of practical use, there should be less attention on how to precisely measure outcomes in routine practice and more on how to achieve them. Similarly, there should be less emphasis on collecting information in practice and more on how to use it. Currently, much information collected is wasted. Interpretation of performance data, particularly by the media, frequently fails to take account of regional variations that are bound to influence aggregate outcomes, irrespective of service quality.
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Looking to the Future |
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Health and social care services should be better integrated, but policy makers have known this for a long time. Some of the legal and organizational obstacles to collaboration have been removed, but the frequency of reorganizations of the NHS and of local government can distract much management effort into internal organizational and systems issues. For community care to work successfully, increases in NHS funding have to be complemented by attempts to address relative underfunding of social services for older people (43)(44). It is important that attempts to tackle problems of interagency coordination (e.g., through specialized intermediate care services) are fully evaluated.
The United Kingdom government, centrally and locally, should follow up recent work—the Better Government for Older People initiative—on trying to ensure that older people have a voice and are empowered to express their views (45). Other European countries have varied mechanisms for consulting with older people in a representative way. The United Kingdom also needs to make its services more sensitive to cultural diversity and to ensure equal access for people from minority ethnic groups.
There are some wider trends that give hope for the future and will assist in meeting these challenges. There are signs that older people themselves will be more demanding and active in seeking to extend their rights and their influence, and, hopefully over time, the concerns of activists will extend from general issues such as pensions, fuel bills, and transport to include more concern about standards in social and health care. There will be real differences in people's access to information, which at best will mean better informed and more challenging consumers of services. Access to the Internet and the World Wide Web will also facilitate the formation and maintenance of interest groups among service users, including those who do not leave their homes, as well as family caregivers.
There will be advances in the treatment and prevention of illness. At the same time, new problems may emerge and existing drugs or other treatments may become ineffective. Within 20 years, the health profession will be able to cure or prevent dementia. Life span will be extended (in the wealthier countries), hopefully with longer healthy life. Retirement age will rise.
I hope approaches to performance management will become less overly bureaucratic and more demonstrably useful. People will learn how to use and interpret managerial information and understand that its role and status are developmental rather than strictly scientific. Equally, there will be advances in evidence-based practice and in understanding the multiple kinds and directions of knowledge transfer. Coordination of research and promotion of evidence-based practice will continue to gain in prominence. More recently, the challenge of evidence-based policy has begun to be more seriously addressed and is currently the topic of a network funded by the National Research Council for Economics and Social Science (46). It seems only reasonable that policy makers who advocate evidence-based practice should be challenged to practice what they preach. Across policy, practice, and research further and better mechanisms should be developed through which older people themselves can influence ongoing agendas and action.
The enduring debates and issues will remain. The aging of the population will ensure that funding remains firmly on the policy agenda: Debates and disagreements about the funding of long-term care and the appropriate division of responsibilities between individuals, families, and the state will continue, as these value clashes are unlikely to be finally resolved. Similarly, how to organize and manage services to achieve consistency and control, while at the same time encouraging flexibility and responsiveness to individuals, will remain a continuing challenge.
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Acknowledgments |
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Received June 28, 2002
Accepted July 1, 2002
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