Chapter 10. Partnerships and care in the community
Susan Lambert
Community care
The term community care is a contested, value laden and idealistic concept. As Titmuss (1968) remarked:
‘Does it not conjure up a sense of warmth and human kindness, essentially personal and comforting?’ (Titmuss 1968: 3)
Community has been described by Raymond Williams (1976: 66) as a ‘warmly persuasive’ keyword to describe an existing or alternative set of relationships. He argues that each generation grieves for the passing of a golden age. Politicians draw on the myth of caring, integrated communities to propose replacements to current systems of care. ‘Community’ is used at one and the same time to describe a network of people with common interests; as a place where participation is to be found and where services are located and where change in social circumstances may be effected. We noted in Chapter 7 the increased development of a ‘mixed economy’ of care. Increasingly, community care has come to mean the provision of services by a variety of different agencies and individuals. Thus, effective links between agencies (inter-agency collaboration) and between professional groups (inter-professionalism) have become increasingly pressing issues. Community support is now provided by:
▪ Voluntary sector agencies: such as MIND, the mental health charity; Age Concern or Help the Aged; Care and Repair; Crossroads Caring for Carers
▪ Private or independent sector: such as care homes, private hospitals, private domiciliary care agencies and registered social landlords
▪ Informal carers including spouse, other family members, friends or neighbours.
The 1989 White Paper on community care, Caring for People, stated:
‘Community care means providing the right level of intervention and support to enable people to achieve maximum independence and control over their own lives … These services form part of a spectrum of care, ranging from domiciliary support provided to people in their own homes, strengthened by the availability of respite care and day care for those with more intensive care needs, through sheltered housing, group homes and hostels where increasing levels of care are available, to residential care and nursing homes and long-stay hospital care for those for whom other forms of care are no longer enough’ (DoH 1989a: 9).
This general definition continues to underpin policy developments although the emphasis on ‘services’ in the extract above has been replaced with a focus on the provision of ‘person-centred’ care.
The policy context and the ‘cascade of change’ 1990
The NHS and Community Care Act 1990 introduced a ‘cascade of change’ into health and social care services (Audit Commission 1992). It was preceded by the publication of two White Papers – one for health called Working for Patients (DoH 1989b) and a second for local authorities entitled Caring for People (DoH 1989a). A common feature of both sets of guidance was that they promoted the development of internal markets in the health and social care sectors. Local authority social services departments were given the lead role for the main groups of service users in the community. Caring for People was underpinned by the concepts of autonomy and choice for service users and ‘seamless’ delivery of care by professionals and providers. It set out six key objectives:
▪ To make the assessment of an individual’s needs and good case management the cornerstones of high quality care and resource allocation
▪ To enable people to live in their own homes wherever possible through the development of day, domiciliary and respite services
▪ To raise the standards of public sector care alongside a dynamic independent sector
▪ To make clear the responsibilities of health and social care agencies and to hold them to account for performance
▪ To encourage service providers to priorities support services for carers
▪ To introduce a funding structure for social care and thus offer taxpayers better value for money.
The achievement of these objectives became – and continues to be – the focus of attention for policy-makers and care professionals, as this chapter will show.
BACKGROUND TO THE REFORMS
It is useful to outline the patterns of care provision that existed prior to the watershed community care reforms of 1990 in order to understand the reasons for the changes and to assess their impact upon patterns of care delivery. Up until the mid-1970s, the district nursing service was funded by local government and nurses were able to respond to a wide variety of patient needs in the community. They carried out tasks ranging from making breakfast to managing complex end of life care for their patients, and many of course still do (Griffiths 1998). The separation of health and social care began in 1974 when the NHS took over responsibility for district nursing services. The gap between the professions of local government based social workers and nurses employed by the NHS widened, leading eventually to demands for improved interagency and interprofessional working to close the divide between the professions and to provide holistic, coordinated services in order to enhance care for patients and service users in the community.
Community care occupies a central point in the continuum of care between informal care provided by family members in a person’s own home and the provision of formal care by paid staff in a hospital or long stay institution. Until the 1960s and 1970s care of the most highly dependent people including older people, people with mental illness or physical and learning disabilities was provided in the main at the expense of the state in a care home or long stay hospital setting. A series of trenchant critiques of this type of institutionalized provision catalogued many examples of physical neglect and abuse (e.g. Goffman 1968, Morris 1969, Robb 1967 and Townsend 1962). A growing understanding of the extent to which institutionalized communal living created psychological dependency and loss of individuality led to further demands for reform (see Chapter 4). A parallel development was the ‘planning for priority groups’ movement that developed during the 1970s.
Case study
De-Institutionalization – discharging mentally ill patients into the community
Traditionally many people who were mentally ill, disabled or frail because of old age were segregated in institutions such as special hospitals or residential homes. Asylums were built in the nineteenth century for those people believed to be mentally ill in order to remove them from society. This approach was considered by some at the time to be in the person’s own good as it kept them away from unregulated ‘madhouses’ and squalid workhouses for the destitute poor. The number of asylum inmates increased dramatically from 16 000 patients in 1859 to 132 000 ‘lunatics’ and 32 500 ‘mental defectives’ in 1939 (Dingwall et al 1988). However, in the post-war period, developments in drug regimes and talking therapies led to a belief that many conditions could be cured and that mental illness should be treated as an illness and therefore people did not require to be locked behind closed doors for the rest of their lives. During the 1960s, a growing body of professional opinion argued that asylums themselves compounded mental illness by compelling inmates to live abnormal lives. Goffman (1961) argued that the regime of hospitals was designed to meet the aims of the institution rather than the needs of the individuals who lived there as we discussed in Chapter 4.
The worst fears of critics of the long-stay institutions were confirmed during the 1960s and 1970s by a series of scandals over the treatment of people living in special hospitals (Martin 1984). A growing emphasis on respecting the rights of patients was reflected in the content of the Mental Health Act (1983). By the 1980s, the policy of discharging more and more mentally ill patients back into the community – known as de-institutionalizing them – was well under way. Custodial care remained to deal with chronic long-standing mental disorders but therapeutic services in the community were developed for acute, less serious mental disorders. De-institutionalization has not been without problems. Cutbacks in local government expenditure led to difficulties in developing adequate community-based support services in the community. Staff working in welfare agencies faced new demands for which they had been inadequately trained. Concerns grew about the fate of the many people who were discharged from institutions. We noted in Chapter 4 that the creation of asylums in the nineteenth century was intimately linked with the restructuring of the labour market during the industrial revolution and with the desire to discipline the poor and indigent. According to Scull (1977), this era of incarceration was superseded in the late twentieth century by an era of ‘decarceration’ when the labour costs of institutional care became prohibitive. Thus, it was always questionable whether community care would be adequately funded.
Slowly the shift began towards the provision of small group homes in the community. Initially Conservative and Labour governments continued to accept a major role for public services in supporting highly dependent people whether in hospital or the community however during the 1980s this was to change. The emphasis on publicly provided care in the community was replaced by an emphasis on care by the community (DHSS 1981).
The closure of long-stay hospitals and the transfer of patients into the community was expected to lead to a diffusion of responsibilities for funding and provision of care between private, public and voluntary sectors. However, the cost of private care provision continued to be borne by the public sector because older people on low incomes could have their costs met by their social security housing benefit payments instead of the NHS. The private care home sector expanded to accommodate older people and other individuals for whom hospital-based care was no longer considered appropriate with their fees funded mainly out of welfare benefits. For local authorities, there were ‘perverse incentives’ to discontinue providing residential care themselves and to place people instead in private care homes since private nursing home care came out of the central government social security budget not out of their budgets. For older people and their families there were financial incentives to sell the family home, pass capital and savings to relatives and thus be eligible for welfare benefits to cover their fees. During the 1980s, the Social Security budget increased from £500 million in 1986 to £2.5 billion in 1992 (Timmins 2001). This led to demands for reform. It was the desire to cut costs more than any other factor that caused the government to act (Lewis & Glennerster 1996).
The expansion of the private care home market funded at the expense of the public purse, also contradicted the government’s ideological approach to family values and overall intention to reduce dependency on the welfare state (see Chapter 7). The government sought to encourage the development of private alternatives based on care funded out of personal income and savings or provided by relatives.
Consider the ways in which nursing work in the community is influenced by the key objectives outlined in Caring for People (DoH 1989a).
The mixed economy of care
The Conservative government’s remedy to reverse these trends was set out in the 1989 plans for health and social care. Policy-makers wanted to see the development of needs-led services, based on assessment and care management and internal markets in health and social care. Local authority social services departments were to be responsible for coordinating the assessments of individuals to establish whether they were in need of services. Prior to the reforms older people entering residential care had not always had their needs for such care professionally assessed. After the reforms, health and social care staff would act as professional gatekeepers to these services. Packages of care based upon a personal plan of care, would then be purchased from private, statutory or voluntary agencies for people deemed to meet eligibility criteria. A range of services would be developed to sustain people in their own homes, to offer day or respite care, sheltered housing or residential and nursing home care. The encouragement of such independent or voluntary sector provision within the community, alongside statutory services, became known as the mixed economy of care (see Chapter 7). The relationship between purchasers and providers was to be based upon the service level agreements or contracts.
A system based on market principles was thus introduced into community care (see Chapter 4, for a discussion of market principles). Local authorities became the purchasers of care from a selection of providers. Competition was introduced into the social care market and it was believed by policy makers that this would increase quality and standards. Service users and their care managers would make choices on the basis of quality and appropriateness of services. In practice, the ability to make choices was limited by the funds available to care managers to purchase care and the lack of a thriving private sector in many areas.
The role of local authorities thus changed. Many councils transferred their care homes to the independent sector and they ceased to be direct service providers. It was also anticipated that local authorities would develop needs led services not just on the basis of individual care plans, but that the accumulation of knowledge about individuals would lead to community-based needs planning and the production of a Community Care Plan. In developing services and in planning for the future, local authorities were expected to involve their partner health authorities in joint working arrangements. The policy-making approach to the development of partnerships up to and including this period has been described as ‘optimistic’ in that it was based on the assumption that health and social care organizations would work together when exhorted to by government because it was in the best interests of patients or service users to do so (Hudson 1999: 198).
In developing a mixed economy, the provision of care was redistributed across the formal health and social care sectors, to the independent or private, and voluntary sectors. Conservative governments of the 1980s and 1990s introduced changes in the way services were funded, planned and delivered to clients and service users. The legislation that underpinned the reforms – based on the two separate 1989 White Papers – maintained the distinctions between health and social care and thus had only limited success in achieving their stated objectives of collaboration and partnership. Indeed the NHS and Community Care Act sustained divisions between health and social care and lacked clarity over the responsibilities of each sector to service users. The Act in extending the number of sectors engaged in service delivery inevitably made coordination more problematic. It exacerbated the historic fragmentation of service responsibilities for patients and service users between:
▪ Health sectors (primary, secondary, community and public health)
▪ Voluntary sector agencies
▪ Private and independent providers.
As to the role of nursing in community care, the White Paper for health, Working for Patients (DoH 1989b), paid scant attention to nursing’s role in community care. On the other hand, Caring for People (DoH 1989a), referred to the importance of the role of health practitioners including district nurses and health visitors in the multidisciplinary assessment of needs and the provision of care or support. Local government social services’ departments were given lead responsibility for coordinating the activities of multidisciplinary teams of social workers, nurses and professions allied to medicine.
Case study
The health and social care divide and the concept of the ‘social bath’
This section discusses the concept of the ‘social bath’, originally conceptualized by Twigg (1997) to analyse the boundary between medicine and social care, and used by Griffiths (1998) to develop the concept in the context of district nursing.
From a community nursing perspective, one of the most significant outcomes of the NHS and Community Care Act was the way in which the Act confirmed changes in the work of district nurses that had been set in motion years earlier. The task of bathing patients at home had devolved from district nurses to nursing assistants or auxiliaries. Following the Act, personal care could be administered by unqualified but trained care assistants and bathing became ‘a symbol for the uneasy divide between nursing and social care’ (Griffiths 1998: 237). Nursing assistants could help bathe a patient with ‘medical’ or ‘nursing’ needs and care assistants helped bathe clients for hygiene or ‘social’ reasons. In practice, as Griffiths’ study indicates, distinguishing between a ‘nursing’ and a ‘social’ bath was based on a curious blend of subjective decision-making and interpretations of local authority eligibility criteria. Some district nurses continued to bathe patients at risk of developing, or who had, pressures sores, whereas in other cases the patient’s hygiene needs would be attended to by social services’ carers and a nurse would visit to manage the patient’s pressure area. Some nurses, but not all, continued to manage catheterized patients as this extract from one of Griffiths’ respondents illustrates:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
