Sociology of Health & Illness Vol. 26 No. 4 2004 ISSN 0141–9889, pp. 411–432 Davina Original Routine Allen, resource Articles Lesley allocation Griffiths inand stroke Patricia rehabilitation Lyne Blackwell Oxford, Sociology SHIL © 0141–9889 0 1 4 26 2004 00 Blackwell UK Publishing ofPublishing Health &Ltd Illness Ltd/Editorial Board 2004
Accommodating health and social care needs: routine resource allocation in stroke rehabilitation Davina Allen1, Lesley Griffiths2 and Patricia Lyne1 1
School of Nursing and Midwifery Studies, University of Wales College of Medicine 2 School of Health Science, University of Wales, Swansea
Abstract
This paper explores routine resource allocation processes in health and social care. While there has been a small body of work which has drawn on Lipsky’s (1980) insights into street level bureaucracy, few have taken seriously the opportunity offered by ethnography to explore in detail the work of front-line staff as a way of observing policy processes in action. Utilising ethnographic data from research into the continuing care of adults who had suffered a first acute stroke, we analyse how staff accommodated patient need and consider the implications that this had for the quality, equality and equity of service provision.
Keywords: ethnography, micro-level rationing, stroke rehabilitation, equity, accommodating need
Introduction This paper explores how human service professionals accommodated the health and social care needs of adults undergoing stroke rehabilitation, and considers the implications this had for the quality, equality and equity of service provision. Its aim is to contribute to the microsociology of resource allocation by exploring the ways in which allocative decisions are rooted in the social relations (Granovetter 1985) and routine practices of service providers (Griffiths 2001). While there has been a small body of work which has drawn on Lipsky’s (1980) insights into street level bureaucracy, few have taken seriously the opportunity offered by ethnography to explore in detail the work of front-line staff as a way of observing policy processes in action. © Blackwell Publishing Ltd/Editorial Board 2004. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden MA 02148, USA
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Background All societies limit access to health and social care in one way or another (Daniels and Sabin 2002). Governments across the world are concerned to hold down public spending and thus allocative decisions have to be made at a number of levels. At the macro level, politicians have to decide on the level of welfare funding and how this should be distributed between areas. At the meso level, intermediate bodies such as local authorities or insurance companies make decisions about the resources allocated to different services. At the micro level, the conflicts and dilemmas created by these decisions have to be managed by health and social care providers (Coulter and Ham 2000). Until recently, these processes have remained relatively opaque. With the introduction of new models of purchasing, however, which require buyers to be explicit about the level and quality of services they want, resource allocation has become much more open to public scrutiny and debate. For the most part the terms of these debates have been framed within a discourse of rationing (Light and Hughes 2001, Joyce 2001) and equity has been a key issue. The concept of rationing is underpinned by notions of equity, defined as allocation according to need (Klein et al. 1996), but in the public sector these policy ideals frequently fail to be translated into practice. The notion of a lottery has entered discussions of rationing in the British National Health Service (NHS) and is associated with a critique of the ways in which purchasing decisions have resulted in unequal access to services: the so-called postcode lottery of service provision. Inequities also arise at the level of the individual: Klein et al. (1996) cite Huby and Dix’s (1992) study of the Social Fund in which it is claimed that the needs and circumstances of those people receiving rewards could not be clearly distinguished from those who were refused. Some have concluded that inequities in health and social care provision arise because of faulty health policy implementation. Proponents of this view maintain that more sophisticated assessment or monitoring instruments are required in order to limit the discretion of public sector staff. The emergence of national service frameworks and ‘evidencebased’ treatment protocols in the NHS is evidence of this line of thinking. Others have taken a rather different stance. Drawing on the work of Tim (1995), Klein et al. (1996) suggest that the concepts of need and equity are inherently ambiguous and as such provide an unsatisfactory basis for resource allocation. They argue that: Once we accept the problematic nature of the concepts of equity and need – and the difficulties of trying to operationalise them – then the use of discretion at the point of service delivery becomes not a perversion of policy in the process of implementation but a rational response to the difficulty of devising decision-making rules that are sufficiently specific and robust to cope with all contingencies (Klein et al. 1996: 29). © Blackwell Publishing Ltd/Editorial Board 2004
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It is this line of reasoning which has led a number of prominent analysts (Hunter 1997, Klein et al. 1996) to call for research that adds to current understanding of micro-level resource allocation. Although there is a dearth of empirical work in this area, recent sociological studies have started to improve our understanding of distributive processes. A central concern of this research has been to explore the consequences of patient categorisation on the allocation of services. In people-processing organisations, patient categorisation is a highly visible way in which an individual can be ruled in or ruled out of access to a particular good or service. Studies have revealed how these processes are shaped by the mundane work and professional concerns of service providers (Griffiths 2001) and how the various stakeholders in the decision-making process can employ different rhetorical strategies in order to warrant their case (Hughes and Griffiths 1996, 1997, Heritage et al. 2001). For the most part, however, the literature has tended to focus on key gate-keeping junctures and the focus of attention has been on the fine-grain of categorisation processes. Yet there remains a huge ‘hidden iceberg’ (Klein et al. 1996) of distributive activity, most obviously present in the area of long-term care provision, which has very different characteristics from the orthodox image. Here, rationing is the inevitable outcome of years of under-investment. Allocative decisions are not concerned with specific treatments or services, rather they take place on a minute by minute basis as health and social care professionals attempt to do the best they can within the resource constraints within which they work. Many of these choices are not formulated in a straightforward way to exclude or include; rather they are decisions that are made by individual service providers simply managing their workload (Allen 2001, Griffiths 2001) and which add up and interact over the course of a caring trajectory (Albrecht 2001). As Light and Hughes (2001) point out, whilst the recent Sociology of Health and Illness monograph on rationing made an important contribution to the sociology of resource allocation, a key weakness in the studies described was the lack of outcome measures and also an understanding of the accumulative effects of rationing on whole episodes of care. Furthermore, all too frequently, conceptions of rationing set up an over-blunt dichotomy between treatment and denial (Lapsley and Melia 2001, Prior 2001). In practice however, accommodating needs is more subtle and nuanced, in which it can be difficult to gauge with any certainty the consequences of, for example, providing one treatment over another, or redirecting patients to another provider. By moving the analytic focus away from specific gatekeeping decisions to the multitude of practices that contribute to the course of an episode of care, we shift the terms of the rationing debate into the realms of service quality. The sociologically interesting questions then become: how do staff at the point of service delivery accommodate health and social care needs within the resources available to them, and what are the implications of these processes on the quality and equity of the services provided? In this paper we begin to suggest some answers to these questions by drawing on an ethnographic study of the management of the health and social care interface in stroke rehabilitation. © Blackwell Publishing Ltd/Editorial Board 2004
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Method The study was funded in part by the Wales Office for Research and Development in Health and Social Care. It focused on adults undergoing stroke rehabilitation who had complex continuing care needs. Eight case studies were carried out in two Welsh Health Authorities. A research associate was employed to carry out data generation in each site. The continuing care of each client was explored for six months using ethnographic methods. Ethical approval was obtained through the relevant local research ethics committees and NHS Trusts. Service and line managers were contacted by letter, and project representatives met multidisciplinary teams to inform them of the purposes of the research and to address any concerns. Potential case study subjects – i.e. adults with complex continuing care needs – were identified in consultation with acute sector staff. They were advised to discuss the study with their family and to consider whether they wished to participate. Signed consent was obtained from all study participants and their principal carer. Once cases had been identified, access negotiations were taken forward on an individual basis with all those involved in the care provision. Snowball sampling was employed to trace the networks through which care was delivered and to identify the key players and processes involved in the planning and provision of services. Interviews were undertaken with all those involved in the care of the case study subjects and also with the clients and their carers. We also made observations and tape recordings of key events in the cases’ care – such as home visits and multidisciplinary team meetings. These data were supplemented with the analysis of case notes and additional documentation. The local policy framework was established through the use of documentary analysis and interviews with key personnel. All tape-recorded data were transcribed in full. Data analysis was facilitated by employing a qualitative data analysis program: Atlas/ti (Scolari 1997). An initial coding frame was devised – comprising descriptive and analytic codes – and applied to the data set, and subsequently refined as the analysis progressed. The software supports the construction of analytic maps which detail the caring network in each case.
Health and social care in stroke rehabilitation The study was undertaken against the backdrop of a long history of policy concern about interagency working at the health-social care interface. The aim of the study was to explore the ways in which staff at the point of service delivery managed their roles, responsibilities and working relationships in the provision of services to people with continuing care needs in order to identify those factors which assisted or militated against integrated working. The care of adults who had sustained a first stroke was studied because, typically, they have complex health and social care needs. These require © Blackwell Publishing Ltd/Editorial Board 2004
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close working between a range of public, private and voluntary sector agencies and service providers in order to put in place the arrangements necessary to support ongoing care and rehabilitation across the acute-community interface. Although we recognised that resource issues would need to be included within the study’s focus, it was not a principal concern. In practice, however, it has been impossible to consider interagency and interprofessional working in isolation from resource constraints; they were written right through all the cases we studied because of the myriad ways in which they shape service provision, both directly and indirectly. In the UK, long-term care has suffered from years of under-funding. There was evidence of this in the 1970s in the scandals about continuing care institutions. Since this time, UK government policy has been aimed at securing a commitment to community care, with similar trends being reported in the United States and Europe (Bull and Jervis 1997, Mistiaen et al. 1997). The number of people in long-stay hospitals has been declining and the length of in-patient admissions has decreased. Patients are now being discharged into the community who in the past would have received institutionalised or acute hospital care (Bebbington and Charnley 1990, McKeganey 1991, Marks 1991, Kirk and Glendinning 1998). Moreover, responsibility for long-term care has increasingly been shifted away from the NHS (which is free at the point of service delivery) to local authority provision (which is means-tested), generating debates about the burden of care shouldered by family care givers and the injustice of vulnerable people selling their homes in order to finance their continuing care needs. This overall trend represents a reduction in the ‘social wage’ (Popay et al. 1998) and, as the social wage is cut, individuals need an increased income in order to maintain the same standard of living. Yet, as Bartley et al. (1998) observe, historically, reductions in the social wage tend to take place at the same time as reductions in the amount of income available to non-privileged households. Moreover, as New and Le Grand (1996) note, the progressive shifting of the boundary between what the NHS does and what other agencies do has occurred on an ad hoc basis, which has not promoted a sense of geographical equity, nor a clear understanding of what the NHS should provide. For example, the Department of Health and Welsh Office circular – WHC (95) 7th February 1995 (WOC 51/95) – requested all health authorities to draw up eligibility criteria for continuing care, effectively spelling out the free continuing care they were willing to provide. This has resulted in local variations in provision, and, in some areas, ‘health’ activities – such as day-to-day catheter care and stoma care – have been re-defined as social care.
Theoretical framework The study was framed by an interactionist perspective which emphasises the negotiated, contingent and constructed qualities of social life. Whilst © Blackwell Publishing Ltd/Editorial Board 2004
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interactionists recognise that formal organisational structures – such as job descriptions, policies and procedures – provide an orientating framework in which services are delivered (Strauss et al. 1985), they also stress that much ‘policy making’ takes place at ‘street level’ (Lipsky 1980) where clients and service providers meet. As Lipsky (1980) has demonstrated, in order to understand how an organisation operates we need to look not only at the upper echelons but at the level of service provision. A key issue for proponents of this perspective has been the nature of the relationship between formal and informal organisation. As ‘street level bureaucrats’ human services professionals are placed very powerfully to shape how policy is implemented. Nevertheless such freedom is not wholly unbridled and they are not free to make policy in any way which they choose. The contours of the debates between structure and agency are well etched in the medical sociological literature (Maines 1982, Svennson 1996, Allen 1997) and there is little to be gained by repeating them here. For the purposes of this paper we have elected to take a broadly ethnomethodological approach. This entails acknowledging the constraining effects of organisational structures and policy insofar as they are demonstrably oriented to and interactionally accomplished by organisational actors, or are used by them as resources for sense making (Weick 1995). We take the view that social structures and constraints do not exist in some reified form, they have to be enacted. It is through their accounts of their actions and their sense-making activities that members instantiate structure as real and constraining.
Structural context Resource constraints were a key feature of the structural context in which health and social care needs were accommodated. The most visible and influential dimensions of this were bed-utilisation pressures in the acute sector, and the operation of waiting lists in the community. In both sites, bed-utilisation was a key organisational concern, length of stay was carefully monitored and continuing care co-ordinators were employed to deal with ‘bed blockers’. Waiting lists were also a feature of both settings. Waiting lists function to ration services by delaying access. For example, in order to manage their fixed budget, social services departments in both sites allocated only a certain proportion of their funds each month, via a panel system. The panel met monthly in one site and fortnightly in the other and was a key factor leading to delays in discharge: Continuing care co-ordinator: [T]he panel meet once a month. So if somebody is identified as requiring a placement two days after the last meeting, they will have to wait in hospital for another three weeks before the next panel meeting. [ . . . ] But they try to do this in an effort © Blackwell Publishing Ltd/Editorial Board 2004
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to spread the budget on a fairly even basis through the year (Interview data – MGI0916). For the most part, the micro-rationing literature indicates that health professionals have been generally reluctant to account for their practices in terms of cost-containment, preferring to frame them in terms of clinical need (Aaron and Schwartz 1984). As Hughes and Light (2001) note, however, this situation now appears to be changing. The health and social care providers we studied were quite openly oriented to resource issues and explicitly accounted for their decisions in these terms. Nevertheless, these discussions were rarely expressed in the language of rationing per se and, whilst there was an awful lot of funding talk, the over-riding concern of staff was to find appropriate packages of care for clients and ensure that discharge was timely. Whilst discussions of funding availability inevitably centred on individual components of a case’s care, care packages tended to be viewed in their totality; funding was informally vired from different sources in order to expedite a timely discharge.
Accommodating health and social care needs [T]he real challenge of rationing is finding some accommodation between a patient’s needs and circumstances and the resources available at a particular point in time. Judgement is a critical feature of the many daily decisions which are made about finding such an accommodation or fit between the ideal on the one hand and the acceptable on the other (Hunter 1997: 68). In the second part of this paper we analyse our case study data in order to examine the social processes through which staff accommodate need and the consequences that this has for service quality. Alternate sources of funding One of the most striking findings to emerge from the research was the importance of private finance in meeting gaps in State provision. Faced with shortcomings in funding or waiting-list delays, health and social services staff attempted to find other means of accommodating client need in order to facilitate patient discharge. They showed themselves to be extremely resourceful in this regard. They had a good knowledge of various charities that they could turn to for assistance for certain categories of client: But again you could wait for two or three years, for a stair lift. Because they’re about two, three thousand pounds. One to go through the ceiling, I think they’re about five or six thousand pounds, right? So, literally, they could wait on the list for years. So in them cases, sometimes we’ll apply for a grant from the Stroke Association [ . . . ] We might ask the British Legion, you know, this man has been disabled, he’s been a long-serving © Blackwell Publishing Ltd/Editorial Board 2004
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member of your Legion. Do you want to give a donation to a stair lift, you know? (Interview – CISSN1030). It was frequently the case that sources of funding would be applied for simultaneously in order to cover all options and maximise the likelihood of success: Staff nurse:
Rosa, equipment on order, 12th October, should be here in two weeks from then. The mattress. District [Nurses Health visitor: Have] been aware of it. Staff nurse: But the district nurse has filled in a continuing-care form for the mattress to see if the Health Authority will fund it. Health visitor: They do that to see if they can get it quicker (Fieldnotes – GFN0125). Our study also revealed numerous occasions on which families were encouraged to privately fund equipment and modifications to their home in order to effect a timely discharge: The occupational therapist explained to the family that there was a long waiting list for a commode but that they could be bought for around £50 and that she would give them the address of the stockists if they wanted (Fieldnotes – GFN0812). We can order a hoist to get her in and out of the bath, but that’ll take several months from social services. The patient’s niece might be able to get one sooner though (Fieldnotes – CFN0724). Staff explicitly acknowledged that those clients who could fund their own care could have a faster discharge and had more options open to them: Senior nurse:
A patient could be sufficiently ready on medical grounds to leave the unit . . . but remain . . . because the necessary social arrangements are not in place due to economic and bureaucratic reasons. . . . If they’re private and can pay for their social care themselves then they could be out within a week (Fieldnotes – CFN06221).
Yet while private finance was a key mediator of the health and social care interface for some families, there were many others who were unable to make a contribution to the costs of their care: DM:
Occupational therapist:
So what happens if the patient can’t afford, they can’t afford to buy it themselves, it is essential for discharge what would happen with the patient? They have to wait until we can get it (Interview – MI1016).
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Black market There was also evidence of an equipment ‘black market’ whereby items of equipment were held back by staff rather than being returned to central stores, so that they had immediate access to them: She said that luckily for them, CM, a technical instructor at [ . . . ] hospital keeps his ear to the ground and often after repairing equipment will not return it to the stores but will put it aside for them. [ . . . ] ‘We would be lost without him’ she said (Fieldnotes – GFN0812). Occupational therapist:
So we tend to hang on to them [commodes] and clean them up ourselves which for health and safety reasons we shouldn’t do, but we do, because we need to do it, because that is the only way we can get our patients home (Interview – MI1016).
Because sometimes we used to keep a spare commode. So that if we were waiting for patients’ commodes to come through, then we would lend them our spare one and when the new one came in we would have the new one and then again, when the next person was ready, give them the commode, wait for the new one to be delivered, we’d have the new one. But you’re not supposed to do it (Interview – CISSN1030). A striking feature of many of these informal practices was the extent to which they involved the transfer of resources from the health authority to social services. Although staff recognised they were breaking formal procedures they persisted in bending the rules in order to facilitate patient discharges. Renegotiating ‘need’ One way in which staff responded to these circumstances was to target achievable goals which were manageable within the constraints under which they were operating. Here, ‘need’ became narrowly defined in terms of risk management (Waterson 1999) and risk, rather than needs assessment becomes a distributive device. In one of our cases the patient was discharged but, because the modifications to their home were incomplete, they were unable to have a shower or a bath. In another example, attempts were made to discharge a patient home although there was no means of access. In this particular instance, discharge was delayed because the patient’s husband, a retired health professional, intervened and resisted the decision. We learnt, however, that it was relatively commonplace to discharge wheelchair-bound people who remained imprisoned in their own homes whilst awaiting modifications from social services: LM:
Well, say for example, he couldn’t have accessed his home via the back entrance, and his wife couldn’t pay privately for this wall to be built, then what would happen? © Blackwell Publishing Ltd/Editorial Board 2004
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Staff nurse: Well probably what would be done is we would just get him home in the ambulance. The ambulance men would have got him into the house and then he would have been house bound until the alterations had been made (Interview – CISSN1030). In some instances treatment would be revised in order to accommodate needs to fit with the services available. For example, one of our cases who was being prepared for discharge, supported by local authority (social) care provision, was receiving subcutaneous nutritional supplements. In the following extract, the team discuss stopping the supplements because not all social care staff have the skills to give them, and their continuation was likely to create inter-agency debates over who should be responsible for her care, which would further delay discharge: Consultant: Staff nurse: GP: Consultant: GP: Consultant: Staff nurse:
(to the Staff nurse) Well, what are her needs? She refuses food sometimes, she refuses drinks sometimes, so she has subcuts. If we use subcuts every social worker thinks she is continuing-care [i.e. eligible for health authority funding]. So she does need supplements with subcuts. If we let her dehydrate a little then the Osborne receptors in the brain would activate, she’d drink then [ . . . ] Shall we reduce the subcuts? Withdraw? Reduce to 500ml (Tape-recorded meeting – GM1020).
Working the system The health and social services interface has become increasingly codified in terms of who provides what, what levels of provision are available and clients’ eligibility for services. Yet, because such processes depend on the categorisation processes of staff, as street level bureaucrats there is still considerable scope to work around these structures (Griffiths 2001, Vassy 2001). There were numerous examples of ingenious ways in which service providers attempted to work around the restrictions of the system in order to accommodate need. For example, in one case, in which there was some disagreement as to whether a client should be funded by health or social care budgets, the social worker urged health providers to categorise the client as in need of healthcare, because at this time social services had run out of money and would be unable to support discharge.
Quality, equality, equity In the final part of this paper we explore the outworking of these strategies for accommodating need from the perspective of the client and their family. © Blackwell Publishing Ltd/Editorial Board 2004
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Because we followed our cases over a whole care episode our data allow us to assess and compare the quality of the care they received. This was particularly marked because the two study sites had very different socio-economic profiles. The cases in Area 1 lived in electoral wards with higher levels of socio-economic deprivation than those in Area 2. At the time of the study the allocation of health and social services budgets in Wales was made on a per capita basis, and therefore failed to recognise higher levels of disadvantage. This brings to mind Tudor Hart’s notion of the ‘inverse care’ law (Hart 1971) which he used to explain how those in more need live in areas where, because demand is high due to the links between poverty and ill-health, the services are often stretched to the limit. Moreover, areas of high deprivation are less attractive to health and social care professionals. Although resource issues shaped the accommodation of patient needs in both sites, in Area 1 almost all meetings contained references to the way in which this site was under pressure because their patients were typically from an area of high socio-economic deprivation, had complex needs, no access to private finance and so blocked beds. There was also a higher level of conflict between health and social care agencies over funding issues. As we have seen, private finance was an important mediator of the health and social care interface; in Area 2, three out of four families were able to make a financial contribution to their care1. This meant discharge was timely and they had greater choice as to the discharge arrangements which would suit them best. Conversely, accessing private finance was rarely an option in Area 1 as these cases did not have sufficient resources to contribute to their care. These inequities and their impact on service quality are illustrated in the following two case studies.
Case study examples Rosa (Area 1) Rosa, an 83-year-old widow, was living in sheltered accommodation when she sustained a stroke. She had a very supportive family who visited her every day and undertook cooking, shopping, laundry and cleaning. Her only source of income was her pension. Initially, Rosa made a good recovery and plans were made for her to be discharged to her daughter’s home with the support of family and home care (provided by social services). However, Rosa suffered a further stroke which rendered her doubly incontinent and wheelchair bound. The social worker suggested that a nursing home would be the most appropriate discharge destination; the family, however, were opposed to this idea. Because of the pressures on bed utilisation and the operation of waiting lists for accessing social services funding and equipment, staff begin discharge planning as early as possible. Moreover, despite the rhetoric of choice and individual need, in complex cases, such as Rosa’s, there is an incentive for health and social services providers to promote a nursing home rather than a home placement, because the former are easier © Blackwell Publishing Ltd/Editorial Board 2004
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to organise and are less likely to be hampered by waiting list issues. In the following extract, which is taken from a meeting with the family and the social worker, we can see how the subtle pressures created by resource considerations impact on the so-called choices of clients and their families. The meeting was arranged by the ward manager in order to speed up the family’s decision making regarding discharge: Son-in-law:
Senior social worker:
Son-in-law:
Senior social worker:
Son-in-law:
I am quite happy to support [Jayne, Rosa’s daughter] in anyway I can. I know, like when my mother was ill if somebody said nursing home, I wouldn’t do it. You know, if it is an option we can go for, then we would probably like to talk about it a bit more. [ . . . ] You need to go and look at some homes, you are also going to need to talk to the nursing and medical staff here about physically what they do. [ . . . ] Because you are coming in after work, you need to know literally, what physically, what a day is going to mean for you. [ . . . ] Can you cope with it? Can you cope with the distress of when you need to move her and she is crying out in pain when there is no way of moving her without pain. [ . . . ] We don’t know whether the meeting was brought today because doctor had had a chat with you or whether she has been in some weeks now and we can’t do much else for her can we but stick her in a home. [ . . . ] Look I think you need to get something absolutely clear. There is no desire to ever shovel people out of hospital. There is recognition that sometimes, a hospital does not offer the best quality of life. Right? And everybody understands that. Because hospitals are busy places, there is no privacy, there is no normality, there is no peaceful space. Now there comes a time when you have to start saying, right it is time to move on, is it time to start making decisions. If you were talking about a nursing home, what a nursing home offers is an individual room where you can have nursing care and where you can have your own things around you and where as a family you can see the person you care for and obviously you care or you wouldn’t be here. [ . . . ] Of what you know of the case, do you really think it is the wrong course, your honest opinion, or
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have you been told that she is so bad we couldn’t cope, or are you thinking well it’s up to them. In your honest opinion. I can’t give you my honest opinion in such a simplistic way, it is your voyage. In a sense and to give you information and help in your directing. I don’t know you, I don’t know what you are capable of. I don’t know how you would cope with the pressure sore. [ . . . ] With a pressure sore? Yes, I don’t know how severe an issue pressure sore management is going to be with Rosa. I don’t know how you can cope with getting up three or four times a night to turn somebody. These are things you are going to have [to consider] (Tape recorded meeting – GFN0125).
Despite the pressure exerted on them, the family decided to take Rosa home. This created delays in her discharge because no arrangements had been put in place to support home care, as the team was working towards a nursing home placement and had assumed that the family would accept this recommendation. In order to support a home placement social services home care provision was needed and several items of equipment were required: bed, cot-sides, a hoist and a commode. Discharge was delayed initially by two weeks because no equipment was available. The district nurse completed a continuing care form to see whether the health authority would fund a mattress in an effort to access the equipment faster. Staff struggled to find a way around these difficulties and ensure a discharge. At one point it was suggested that Rosa be discharged without equipment but nursed in bed. However, this arrangement would have meant that no home care could be provided because manual handling regulations prevented home carers lifting without appropriate equipment. As pressure on beds increased, the consultant, who was rapidly losing patience, decided that Rosa be transferred to a nursing home until a home discharge could be arranged. Fortunately, winter pressures monies became available to fund equipment. When the equipment became available there were further delays as social services home care was unavailable because they were stretched to capacity. A striking feature of Rosa’s case was the low levels of trust that existed between the family and members of the team. This was a feature of many of the cases in Area 1, in which the challenges of accommodating patient needs led to staff making negative formulations of family members who did not find the care arrangements offered acceptable. Frequently, families were portrayed as not operating with the patient’s best interests at heart. In Rosa’s case, the family are presented as being driven by financial concerns: © Blackwell Publishing Ltd/Editorial Board 2004
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Health visitor:
The relatives, ((laughing)) they’re all keeping an eye on how much money there is available. [ . . . ] GP: Yeah, of course they are. Physiotherapist: They’re well on the ball, they’re in front of us, they know exactly how much it is going to cost (Fieldnotes – GM0825). The family’s difficulty in reaching a decision was read by members as a stalling tactic in order to allow them to work around a holiday: Ward manager: GP:
The family are going to America. The daughter who is going to look after her is going to America? [ . . . ] Occupational therapist: They’ve strung this out really, they knew the equipment was going to take a long time to get. Consultant: If it’s going to take a while she can, she should go into a nursing home until its ready. Occupational therapist: Yes, what about that! (Fieldnotes – GM0915). Service providers expressed doubts as to whether the arrangements would work, and predicted that within a few days Rosa’s family would realise that they were unable to cope. But, contrary to the team’s pessimistic predictions, Rosa continued to progress. Her continence improved to the extent that she was only having to wear pads at night and she was well enough to attend the local day centre once a week. Nevertheless, at the end of the study, Rosa’s daughter was beginning to feel the strain and was trying to increase Rosa’s day care attendance to afford her some respite. Brian (Area 2) Brian was 87 years old when he suffered a right-sided stroke. He had been fit and well hitherto and had played golf regularly. He lived in a converted barn in the grounds of his son’s home. His son was a managing director and his daughter-in-law ran her own business. Brian had extensive nursing needs which ordinarily would have resulted in his admission to a long-stay bed, however, his son expressed the wish that he should return home when he was well enough. Although health authority funding would not support the level of care Brian needed to be discharged home, the family had access to private finance which allowed them to pursue this option. Brian required a complex package of care which necessitated close collaboration between the family, a private care agency and the community nurses. As these arrangements take shape, Brian’s ‘needs’ become renegotiated in terms of a workable and affordable care package. The following extract is early in the case conference in which, following an emotional statement by Arthur, Brian’s son, about the family’s desire to have Brian home, the senior staff nurse outlines the level of care Brian will require. © Blackwell Publishing Ltd/Editorial Board 2004
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Staff nurse:
We’re always treating him with two nurses. Because he’s unable to move himself [ . . . ] And we turn him every four hours. [ . . . ] Occupational therapist: So we are looking at somebody being up during the night. Staff nurse: During the night, yeah, for two turns. AJ: How many do you need to turn? Staff nurse: [ . . . ] We never treat him with less than two [ . . . ] But then, you needn’t have two people there all the time. You could have a second person going in at those times (.) But, of course, it’s unpredictable then when he asks to go on the toilet.[ . . . ] I mean, he wears an incontinence pad anyway so if they couldn’t get him up in a hoist then I mean, he wouldn’t be a great inconvenience for him to use the pad. [...] Continuing care co-ordinator: The district nurses [ . . . ] could support up to five visits in 24 hours [ . . . ]. Morning visits, an afternoon, an evening, and two visits by night. The evening and night visits, they work in twos anyway [ . . . ] AJ: I suppose there’ll be one person at the place all the time anyway won’t there? Social worker: Erm, if we’re talking about one qualified person to stay there for the full 24 hours, that works out at approximately £326 a day which times seven comes out at £2,280. That’s for one qualified person. Now whether that’s considered necessary with the district nurse input. [ . . . ] Staff nurse: So you’ll probably need a carer maybe. Social worker: That might mean, because obviously they’ll have direct contact with the district nurse, if anything came up that they didn’t feel qualified to handle, plus, there’s the regular input during the course of the day. Now, that works out at £500 (Tape recorded meeting – CM0812).
Whilst throughout the case there were frequent references to money not being a problem for the Jenkins family, it is clear that Arthur had not appreciated the full costs of his father’s care: AJ:
These figures are amazing aren’t they? I mean, £2,228 for a week comes to over £120,000 a year. I mean. No-one can afford that, can they? [ . . . ] © Blackwell Publishing Ltd/Editorial Board 2004
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Staff nurse:
Most people would go into long-stay care with qualified nurses. [ . . . ] AJ: That, £500 a week, is about, I guess, what we can afford. But, I’m worried now that with all the extras on top of that like, feeds and medical instruments and hire of beds and all the rest of it. Continuing care co-ordinator: It’s all sorted. The district nursing service. The district nurses can order a hospital bed and cot sides, the hoist (.) commode, catheter stand (.) inco products (Tape recorded meeting – CM0812). Having been reassured of the facilities that would be provided by the health authority Arthur requests that Brian be provided with a bed the same as that he has been nursed on in hospital. When it emerges that this is not available in the community, options for purchase and hire are considered. AJ:
Erm, that magic bed he’s been on. It’s been a huge success from our point of view. I mean. I don’t know. I don’t think he’d have had such a pleasant time if he hadn’t had it. Would he? I don’t know. Staff nurse: No. It’d make our nursing life a lot harder. [ . . . ] Continuing care co-ordinator: No. His will be a King’s Fund bed. It won’t be an electric one. AJ: Well. I’m really keen to get the same quality stuff. Even if I have to pay or hire it (Tape recorded meeting – CM0812). At the close of the case conference it was agreed that the team would work towards a home discharge. Arthur Jenkins would explore care agencies to provide 24-hour unqualified care. The carer would be supported by community nurses who could make up to five visits a day, this being the maximum input they were allowed to provide. Certain equipment would be provided through the health authority but the family would privately fund the electronic bed. Following the case conference, the district nurses, continuing care co-ordinator, social workers, senior occupational therapist and a ward nurse met to specify in detail Brian’s daily care needs. The meeting displayed a number of interesting features. First, the extent to which resource issues figure prominently in the text. Secondly, how far needs are renegotiated in order to fit service availability. One of the critical issues in managing Brian at home was manual handling. Brian was a heavy man and, owing to limb contractures, very difficult to lift and transfer. In order for his package to work, it was essential that district nurses were available at the appropriate times to assist the home carers to turn and lift him. This raised a number of issues in relation to resource allocation. First, once all Brian’s daily care needs had been mapped out, it became clear that he required six visits by the district nurses and the maximum he © Blackwell Publishing Ltd/Editorial Board 2004
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was entitled to was five. In the following extract staff try and negotiate how work might be organised in order to ‘lose’ the extra visit: District nurse team leader: Well, I think we’re looking at six [visits from the district nurses]. Occupational therapist: [ . . . ] And to get rid of that it would be useful that, when the care agency were sort of changing shifts, they could double up and do a turn then (Tape recorded meeting – CM0813). The availability of only five district nursing visits also meant that Brian’s treatment schedule needed to be amended: District nurse team leader: I mean, if we can work it out with the agency that they can double up and do the turns when they’re doing their changeover, and whether they are allowed to give water or do the feeds – I mean, the medication, probably not. We can sort that out. Three times a day. That’s not a problem. But I mean, if they can do the water and even his bolus feeds, is it? Occupational therapist: Yeah. District nurse team leader: And sort that out. Because this here ((pointing to the care plan)) would be three night visits which we couldn’t. Occupational therapist: We’d have to get rid of one. Staff nurse: I mean. The thing is, he could have his water overnight, which sometimes we do do (Tape recorded meeting – CM0813). Secondly, in order to make the care arrangements work it was necessary to negotiate role boundaries between health and social care providers. For example, it emerged that home carers were not permitted to give prescribed substances. It was therefore necessary for the family to purchase the thickened drinks Brian required in order to prevent him aspirating, rather than have them prescribed by the doctor. Moreover, as a result of the changing boundary between health and social care, washing and hygiene needs were no longer considered a health responsibility. So Brian’s package of care necessitated a willingness on the part of the community nurse team leader and home care manager to work with a flexible definition of health need in order to justify the case. Brian’s case reveals very powerfully how the processes through which a case is categorised as either health or social care emerge from practical concerns and, in the case of the district nurse team leader, a sense of distributive justice: © Blackwell Publishing Ltd/Editorial Board 2004
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District nurse team leader: At the initial meeting it was agreed that the agency would be responsible for his hygiene [ . . . ] the feeding, the food and everything, and we are responsible for his PEG tube, but they are responsible for his food that he eats orally, hum, but they were having problems – some of the carers – with washing and dressing him in the morning, because he is so stiff at times. I mean, I am being quite flexible actually, because I could have said ‘no, Arthur, you will have to pay for someone else to come in’. But as far as I am concerned he is paying out enough money as it is for care to keep his dad at home. We are going there anyway, and I can put his stiffness and his awkwardness, not in himself, in his body down to his medical condition, so I feel that nursing will help (Interview – CIDNTL1008). There are clear resonances here with other studies of resource allocation which have revealed how staff bring into play theories of local justice when accommodating need. The notion of ‘local justice’ (Elster 1992) refers to the conceptions of justice that are deployed by those people in a position to influence the distribution of scarce resources. Vassy (2001), for example, describes how notions of ethical practice underpinning the work of staff in a French Emergency Department led them to make treatment exceptions in the case of disadvantaged social groups, who would otherwise have been re-directed to another department. In a similar vein, Hughes and Griffiths (1997) have argued that conceptions of ‘deservingness’ enter into the decision-making processes through which clients were ruled in and ruled out of neurorehabilitation. In this study, it was in those cases in which families were making a substantial financial contribution to the costs of their care that staff oriented to issues of fairness. This is in stark contrast to the negative formulations of those families unable to make a financial contribution to their care package, but who had strong preferences for the quality of discharge arrangements. Brian was eventually discharged with 24-hour home care, supported by five district nurse visits, an electronic bed and hoist. But the fragility of the arrangements quickly became apparent. Concerns were expressed about the demands on the home carers because of the difficulty in lifting and moving Brian. Indeed, the package was deemed to have worked only because the main home carers had the necessary physical strength to cope with Brian. At one point, the home care agency sent in extra support (for which they did not charge), because the carer allocated to Brian’s case was not strong enough to cope, and another left after 24 hours for the same reason. Additional problems arose in relation to the negotiated arrangements between the district nurses and home carers. As we have indicated, in order to make Brian’s package work, the district nurse team leader deployed a flexible definition of health need. However, the arrangements ran into difficulties when bank nurses, who not being privy to these informal arrangements, were not prepared to stretch the boundaries of their role in the same way to assist the home carers with Brian’s hygiene needs. © Blackwell Publishing Ltd/Editorial Board 2004
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It is interesting to ask why health and social care providers in this case were prepared to negotiate a complex care package, whereas in Rosa’s case, they attempted to pressurise the family into a nursing home option. The team’s willingness to negotiate in order to find a suitable package contrasts markedly with the social worker’s emotionally weighted attempt to persuade Rosa’s family to accept the preferred option of the team. First, Brian met the continuing care criteria. This meant that he qualified for non-means-tested health authority funding, and as a consequence, the team were unlikely to incur delays waiting to access funding, or equipment, through social services. Secondly, as we have indicated, Brian’s son had access to considerable private finance to support his care. Thirdly, he had good quality accommodation which would support care at home. Fourthly, and perhaps most significantly, Brian’s relatives had the necessary social capital to work the system: Private home care services manager: He is a very clever gentleman [ . . . ] The first thing he did at that meeting was to say several times that he is very ignorant about this, but you can be sure he is not half as ignorant as he was pretending to be [ . . . ] he disarmed everybody. Everybody was very helpful, trying to do the best they could for him because he was so nice and grateful and said so many times how well everybody was doing. [ . . . ] Everybody did everything and he got exactly what he wanted out of that meeting. [ . . . ] He has got the extra care in the morning and the evening [ . . . ] without even paying for it. He got it. And he manipulated that meeting totally without anybody suspecting really that he was doing it (CIPHCAM & C1007).
Conclusion In this paper we have examined the microsociology of resource allocation in stroke rehabilitation in the UK. Building on the emerging body of work in this area we have explored how resource allocation processes are not confined either to the clinical encounter or gatekeeping committees, rather they are woven through organisational life and embedded in the routine practices of human services professionals. Taking an ethnomethodological interpretation of the work of Lipsky (1980), we have emphasised the role of service providers in making policy within contextual constraints accomplished through their sense-making activities and structures of practical action. Furthermore, we have examined the accumulative effects of these allocative decisions on the quality of the services received by our cases. Allocative decisions aggregate over the course of a caring trajectory contributing to the totality of the client’s experience, and extend beyond this over the lifecourse to produce the inequalities through which societies are structured: © Blackwell Publishing Ltd/Editorial Board 2004
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The life chances of the citizen in modern societies do not depend exclusively on market choices or on governmental decisions. To an increasing extent, they also depend on allocations being made by relatively autonomous institutions, beginning with admission or nonadmission to nursery and ending with admission or nonadmission to nursing homes. One could write the fictional biography of a typical citizen, to depict his (sic) life as shaped by successive encounters with institutions which have the power to accord or deny him the scarce goods that he seeks (Elster 1992: 2). Our cases indicate that when accessing funding is not problematic, health and social services staff were able to collaborate effectively to negotiate integrated packages of care tailored to individual need. In other instances, however, where families were dependent on social services, accommodating need is more difficult. Because of under-funding and the pressures on staff, there is a preference for negotiating the discharge package that is easiest to organise, and this may not always coincide with the preferences of the patient and their family. Our case studies indicate that managing health and social care is challenging under any circumstances. Recent policy initiatives have made much of the need for culture change amongst the health and social services professionals and a reduction in tribalism in order to effect joined-up working. Our findings indicate that where funding was not an issue, health and social services staff displayed an impressive capacity to work collaboratively in order to accommodate patient need and negotiate individually-tailored packages of care. In situations of severe resource constraint, collaborative outcomes are very difficult to effect. Recent policy developments in the UK have made provision for health and social services budgets to be pooled. Certainly, at one level this would appear to make accommodating health and social care need less complex. If budgets are shared, then problems will be too. As we have seen, there are perverse incentives for non-collaboration and the attendant conflicts which arise owing to funding issues do little to support joined-up working. Yet as long as services are based on a capitation basis, and disadvantaged members of society continue to be clustered in areas of high deprivation, attempts to deliver services on an equitable basis are destined to fail. The ability to work constructively and collaboratively across disciplinary boundaries to accommodate needs is clearly hampered when staffs are pressured by lack of resources. Address for correspondence: Davina Allen, Nursing, Health and Social Care Research Centre, School of Nursing and Midwifery Studies, University of Wales College of Medicine, 4th Floor, Eastgate House, 35-43 Newport Road, Cardiff, CF24 0AB e-mail:
[email protected] © Blackwell Publishing Ltd/Editorial Board 2004
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Acknowledgements This study was funded in part by the Wales Office of Research and Development for Health and Social Care, Wales Assembly Government. The views expressed herein are those of the authors and do not represent the views of the Wales Office of Research and Development for Health and Social Care or the Wales Assembly Government. We would also like to acknowledge the valuable contribution of Lee Monaghan and De Murphy who were research assistants to this project. Carine Vassy made helpful comments which enabled us to clarify an earlier draft of this paper.
Note 1
The fourth case was a young stroke patient, who by virtue of his age, was entitled to higher levels of public funding.
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