Introduction
Personalisation of social care for adults is a key policy objective in the United Kingdom (UK), as in many other mature and developing welfare states, having gained wide acceptance as essential for the empowerment of service users and as a means of making the system sustainable in the face of the increasing population demand. Arksey and Kemp (Reference Arksey and Kemp2008) provide a very helpful narrative review of international ‘cash for care’ schemes and in doing so illustrate the interest in new models of provision amongst a wide range of nation states with very different social and economic traditions. In a similar vein, Ungerson (Reference Ungerson2004) reports on cross-national research focusing on the differing types of caring relationships achieved through cash for care schemes (see also Ungerson Reference Ungerson, Leece and Bornat2006). Such studies add to the body of international research (see e.g. Tilly and Weiner Reference Tilly and Wiener2001; Timonen, Convery and Cahill Reference Timonen, Convery and Cahill2006) as well as studies undertaken with a particular national focus (see e.g. Rostgaard Reference Rostgaard2006; Spall, McDonald and Zetlin Reference Spall, McDonald and Zetlin2005), which reflects a shared direction of travel in policy and practice development.
In the UK, the concept of personalisation of social care services can be traced back to the early days of the disability rights movement and its campaign for direct payments as an alternative to oppressive and ‘custodial’ care services imposed by the state (Evans Reference Evans2003; Morris Reference Morris1994; Union of Physically Impaired Against Segregation 1974). The social model of disability (Oliver Reference Oliver1983) and the politics of disability that flow from it (see e.g. Campbell and Oliver Reference Campbell and Oliver1996; Oliver Reference Oliver1990a , Reference Oliver1990b ; Oliver and Zarb Reference Oliver and Zarb1989; Swain et al. Reference Swain, Finkelstein, French and Oliver1993) have roots in the radical ideas and identity politics of the 1960s and speak of a much broader struggle for equality and inclusion, of which the campaign for direct payments is but one facet (see also C. Barnes Reference Barnes and Shakespeare1998; M. Barnes Reference Barnes2008; Barnes and Shardlow Reference Barnes and Shardlow1996). More recent in origin, since the early years of this century, policy entrepreneurs working with and on behalf of people with learning disabilities have championed personalisation through models of independent living, which have been developed and promoted by the organisation in-Control (Poll et al. Reference Poll, Duffy, Hatton, Sanderson and Routledge2006; see also Glasby and Littlechild Reference Glasby and Littlechild2009). Here too, the much wider aim is to promote equality and social inclusion through the equal valuing of people with disabilities and through recognition of their strengths and capabilities (Duffy Reference Duffy2010; National Council on Independent Living and in-Control [2007] Reference Glasby and Littlechild2009).
There can be no doubt that personalisation holds significant potential for improving the quality of life experienced by people with social care needs. Individual case studies frequently demonstrate how personalised social care arrangements have enabled individuals to realise personal choices and aspirations and to experience a greater sense of social inclusion and equality (see e.g. Carr Reference Carr2012; Department of Health 2010; Skills for Care 2009). None of what follows is offered as an argument against the core proposition of a personalised social care system that recognises and responds to the unique character and circumstances of each individual and promotes their equal value and social inclusion alongside all other citizens.
Despite the positive potential of personalisation, it is argued by many (see e.g. Beresford Reference Beresford2008; Cutler, Waine and Brehony Reference Cutler, Waine and Brehony2007; Ferguson Reference Ferguson2007; Roulstone and Morgan Reference Roulstone and Morgan2009; Scourfield Reference Scourfield2007) that the greater influence in the shaping of contemporary personalisation policy and practice in the UK (and elsewhere) has been exerted by ‘Third Way’ and ‘Big Society’ theorists, such as Leadbeater (Reference Leadbeater2004; see also Cottam Reference Cottam2009; Etzioni Reference Etzioni2000; Keohane Reference Keohane2009; Parker and Heapy Reference Parker and Heapy2006; Turnbull Reference Turnbull2003). Whilst it appears to pursue the same goals of equality and inclusion put forward by disability activists and advocates, adopting much of the same language in the process, its central focus is that of making the social care system affordable to the state through delegation of personal budgets to individuals with the expectation that they will be used to achieve better outcomes at less cost to the public purse (Clark, Gough and McFarlane Reference Clark, Gough and McFarlane2004; Scourfield Reference Scourfield2007; see also Needham Reference Needham2011). It is argued that the emphasis placed upon ‘empowering’ people with social care needs in this way reflects an underlying ideology that sees dependency as unnatural and undesirable and is opposed to any professional intervention that might be regarded as fostering it. This is especially so where dependency on the state is concerned (Barnes Reference Barnes2011, Reference Barnes2012; Ferguson Reference Ferguson2007; Lloyd Reference Lloyd2010).
It is for this reason that current personalisation policy and practice has been associated with the broader neo-liberal project of ‘rolling back the state’ and interpreted as a strategy of responsibilisation and abandonment, which is ultimately disempowering to those who, rhetorically at least, are intended to benefit from it the most (Beresford Reference Beresford2008; Cutler, Waine and Brehony Reference Cutler, Waine and Brehony2007; Ferguson Reference Ferguson2007; see also Clarke Reference Clarke2005). In this view, rather than being a radical programme of modernisation and transformation, current personalisation policy and practice is regarded as a continuity of the community care reforms of the 1990s, seeking to extend the reach of market mechanisms by replacing professional care managers as proxy consumers with service users and/or their lay representatives as actual consumers (Lymberry Reference Lymberry2010, Reference Lymberry2012; Newman, Glendinning and Hughes Reference Newman, Glendinning and Hughes2008; Roulstone and Morgan Reference Roulstone and Morgan2009; see also Land and Himmelweit Reference Land and Himmelweit2010; Means Reference Means2012).
Thus, it is argued, personalisation of social care has become associated with a form of consumerism in which independence is constructed as minimal reliance on others, especially the state; choice is narrowly constructed as choice of services and providers in a competitive marketplace; and control involves the management of a personal budget in order to get what is wanted at lesser cost than had it been purchased by professionals employed by the state. The notion of ‘person’ carried within this conceptualisation is that of autonomous, rational and self-serving individual motivated towards maximising the benefits that accrue to them. Houston provides an eloquent summary of how he sees this translating into personalisation policy and practice:
Personalization also resonates with Nietzsche's characterization of the ecce homo: the self-fulfilling actor who rises above adversity and dependency through personal effort to become ‘what he or she is'. Thus, through the medium of personalization, service users take more responsibility for their problems, implement their own solutions and manage accruing risk. (2010: 842)
Barnes (Reference Barnes2011), approaching personalisation from the perspective of care ethics, is critical of such a narrow and excluding conceptualisation of personhood, and observes how ‘choiceandcontrol’ is awarded to those who are considered capable of rising above their reliance upon others, whilst ‘careandprotection’ is the booby prize for those who are not (see also Barnes Reference Barnes2012; Lymberry Reference Lymberry2012; Powell and Steel Reference Powell and Steel2012). In doing so, Barnes refers to an alternative conceptualisation of ‘person’ as an encumbered, interdependent and contingent member of family and community, which has been put forward by care ethicists such as Gilligan (Reference Gilligan1982; see also Baier Reference Baier1994; Held Reference Held2006; Kittay Reference Kittay1999; Sevenhuijsen Reference Sevenhuijsen1998; Tronto Reference Tronto1993).
It is surprising, to say the least, that so little attention has been paid to competing concepts of personhood in the formulation of personalisation policy and practice and evaluations of it. Rather, there has been an acceptance of choice, independence and control as outcomes that are appropriate to all in all circumstances and the focus has been on demonstrating the extent to which they have been achieved or (more often) could be achieved given perfect conditions, and associated savings or (more often) potential savings, to the public purse (see e.g. Clark, Gough and McFarlane Reference Clark, Gough and McFarlane2004; Hatton and Waters Reference Hatton and Waters2011, Reference Hatton and Waters2013; Henwood and Hudson Reference Henwood and Hudson2007; Hudson and Henwood Reference Hudson and Henwood2008; Orellana Reference Orellana2010; Routledge and Carr Reference Routledge and Carr2013). This is particularly so in respect of older people, who seem to benefit less than other groups, evidenced by lower uptake of personal budgets and lesser satisfaction with outcomes achieved through the use of them (Glendinning et al. Reference Glendinning, Challis, Fernandez, Jacobs, Jones, Knapp, Manthorpe, Moran, Netten, Stevens and Wilberforce2008; Slasberg, Beresford and Schofield Reference Slasberg, Beresford and Schofield2012, Reference Slasberg, Beresford and Schofield2013; Woolham and Benton Reference Woolham and Benton2013; Zamfir Reference Zamfir2013).
The research reported here intended to adopt a more person-centred approach to the evaluation of personalisation policy and practice through an examination of its actual impact on older people's sense of personhood. The starting point was to elicit the sense of ‘Self’ experienced by older people using direct payments to meet social care needs; followed by an understanding of how individual social care needs were experienced and impacted upon that sense of Self; and then identifying if/how services became personalised in a way that helped them to maintain a positive sense of Self.
Methodology
The research took the form of a qualitative study with eight participants in two local authority areas in England. In-depth interviews were used to explore participants' experience of using (or refusing) a direct payment to meet their social care needs. The ultimate aim was to obtain user perspectives to inform future policy and practice through an enhanced understanding of the relationship between participants' experience of Self and personalised services. Ethical approval was obtained prior to the start of fieldwork via the Research Ethics Committee of the School for Policy Studies at the University of Bristol.
Participants were recruited via Direct Payments Support Teams (DPSTs) employed or commissioned by local authorities. Each DPST sent a letter to prospective participants on behalf of the researcher which explained the purpose and method of the research and invited them to contact the researcher directly if they were interested in participating. Letters of invitation were sent to a sample of 28 direct payment recipients stratified by age band: 65–74 (four), 75–84 (eight), 85+ (16). The sample was weighted in this way in order to improve the chances of recruiting participants in the older age groups who had come to require social care services after the age of 65 and who, as a group, may be less willing and able to participate because of physical frailty. Twelve responses were received. Eight people were eventually willing and able to participate.
In all cases, informed consent was obtained by the researcher prior to the start of the first interview and confirmed prior to the start of both the second and third interviews. Participants were provided with a copy of the Participant Information Sheet prior to giving consent and the content was explained to them. They were then asked to give written consent: (a) to their participation in the series of three interviews; (b) to the audio recording of those interviews; (c) to the use of anonymised data produced during those interviews in the report of the findings and associated publications; and (d) to the storage of their personal data.
Participants were encouraged to have ‘supporters’ with them during the interviews (see Lloyd et al. Reference Lloyd, Calnan, Cameron, Seymour and Smith2014). Supporters were described in the Participant Information Sheet as a ‘close friend or relative that you trust and feel comfortable with in talking about the themes of the research and the issues involved with them’. A separate information sheet was prepared for prospective supporters. Only one participant opted to have a supporter. Two others wanted their paid carers to be nearby (in their home) during interviews and to contribute to the conversation if invited to do so.
Fieldwork was conducted by a single researcher (the author) as part of the preparation of a doctoral thesis (O'Rourke Reference O'Rourke2014). Interviews were semi-structured by way of topic guides, but conducted with considerable flexibility to allow participants to initiate and develop themes and to accommodate their particular communication styles (Briggs Reference Briggs1986; Kvale Reference Kvale1996; Kvale and Brinkmann Reference Kvale and Brinkmann2009; Roulston Reference Roulston2010). A series of three interviews with each participant took place over a four- to six-week period. Three ‘waves’ of interviews were held with two, then three more, then three more participants. The first wave of interviews with two participants operated as a pilot study through which the topic guides were tested and refined and the interview technique was developed.
Data were elicited in a sequenced way. The first interview sought to elicit data on the participant's sense of personhood or ‘Self’ and how it was affected by age and emerging social care needs. The second sought to relate this to their experience of using a direct payment to procure personalised social care services. The third was used to review the content of the earlier interviews and ‘test out’ the researcher's initial interpretations with the participant. Whilst this sequencing did provide a helpful structure, in practice there was considerable movement forwards and backwards in it, with specific themes being identified, developed, left and then returned to within and between interviews.
Interviews were held in participants' own homes by appointment; the average duration being between 50 minutes and one hour. They were audio recorded with the permission of participants and transcribed by the researcher as soon as possible after the interview. In most cases this was prior to the next interview in the sequence taking place. In addition, field notes were made, usually directly after the interview. These focused mostly on non-verbal aspects of communication that were not captured on the audio recording.
Analysis of the data was undertaken using coding procedures similar to those developed by Strauss and Corbin (Reference Strauss and Corbin1990), which are described and discussed by Flick (Reference Flick2009: 307–12). Open, axial and selective coding were undertaken at the level of each individual case in the first instance with an additional step then being inserted into Strauss and Corbin's method which involved re-constructing the data of each case as an analytical narrative. This provided a coherent overview of each case, which helped to ‘sense check’ emerging findings. The final stage of data analysis involved comparing selective codes across cases to identify common themes in the data-set as a whole and further refining them in relation to the research questions.
The main findings of the research are summarised in the following sections. Two of the eight individual case studies, those of Bill and Fay, are used to illustrate key points. Short pen pictures of Bill and Fay at the time of the research are provided first in order to set the scene. Fay initially asked that her daughter and Julie (her paid carer) be her supporters, but whilst she wanted them to sit in at the start of the first two interviews, she was happy for them to leave after a short time. Fay was content to participate in the third interview without a supporter. In Bill's case Sarah (his paid carer) occasionally came in and out of the room in which the interview was taking place, sometimes making brief contributions to the conversation when invited to do so by Bill.
Bill
Bill is 76 years old. He describes himself as being ‘disabled all me life’, having been born with impaired function in both hands and undergoing an above-knee amputation of his right leg in early childhood. Spinal problems as an adult have resulted in his becoming a wheelchair user. He is unable to stand but can transfer with assistance using a sliding board.
Bill is single and lives alone in a one-bedroom council flat. He is helped on a daily basis by Sarah, whom he employs using his direct payment. Although Sarah is paid to work for 25 hours a week, she spends many more hours with Bill. They go out together most afternoons; Sarah driving the car that Bill rents with his mobility allowance. Bill feels a close bond between himself and Sarah, which he describes in terms of their ‘respecting each other’ and ‘working as a team’.
Bill's account of his life is one of continuing struggle against others' assumptions about him as a ‘disabled’ person. He is especially distrusting of social workers trying to tell him what is best for him. At the current time, Bill is very content with his life and is quick to stress that being cared for by Sarah is the key factor influencing his quality of life.
Fay
Fay is 89 years old. Paul, her husband of 64 years, died 18 months ago and she misses him. Some days she misses him terribly. Days when she is unwell are the worst. It gets her down and she starts to worry, about the children and about the house. What will happen when she is not there? On days like that it is hard for Fay to concentrate on remembering the good life she has had.
Fortunately, most days are not like that and Fay can enjoy many pleasant memories at her leisure. Julie, her paid carer, comes in the morning, at lunch time and again in the late afternoon. Her neighbour pops in most mornings for a chat. Fay enjoys the company of others but is not worried about being on her own. The television is company enough for most of the time. The most important thing to Fay is that she is at home, in the house she chose with Paul, amongst many familiar objects holding many precious memories.
Fay receives a direct payment from the council, which pays for Julie to come. Fay would not be without Julie: she's a ‘good girl and a good friend’. Julie first came eight years ago to help Fay with Paul. For several years Paul suffered badly with dementia and could be very difficult. Occasionally frustration or fear got the better of him and he hit out. Julie was patient and strong; she helped Fay to cope. Gradually, as Fay herself became frail, Julie became the paid carer to both of them. And then Paul passed away.
Narratives of Self
The concept of an ‘ageless self’ is put forward by a number of authors, notably Kaufman (Reference Kaufman1986) and Coleman, Ivani-Chalian and Robinson (Reference Coleman, Ivani-Chalian and Robinson1998), and is strongly supported by the findings of this study. Participants described their experience of Self as a continuity of consciousness and reflection, offering a narrative about themselves to link past, present and anticipated future. Each participant's narrative of Self contained stories of events in their life and their reaction to them, which they selected in order to illustrate what they considered to be defining qualities and characteristics (see Acthley Reference Atchley, Birren, Lubben, Cichowlas Rowe and Deutchman1991; Coleman, Ivani-Chalian and Robinson Reference Coleman, Ivani-Chalian and Robinson1998; Greenwald Reference Greenwald1980; Kaufman Reference Kaufman1986; McAdams Reference McAdams1993; Polkinghorne Reference Polkinghorne1991). Each part of the narrative revealed something of underlying significance, reflecting the individual Self's most basic beliefs about the nature of being; the ‘personal constructs’ developed to make sense of, and give meaning to, internal and external worlds and the interaction between them (Kelly Reference Kelly1955, Reference Kelly and Fransella1977; see also Bannister and Fransella Reference Bannister and Fransella1980; Fransella Reference Fransella1977; Rowe Reference Rowe1982; Walker and Winter Reference Walker and Winter2007).
This is not to claim that the personal constructs upon which participants' sense of Self are premised are fully understood or even wholly accessible to ‘everyday’ Self. Rather, primary personal constructs so embedded as to seem a priori are given expression in everyday thoughts, feelings and behaviours at the surface/close to surface level. Participants became more aware of the surface/close to surface expressions of their personal constructs when they were reflected back to them during interviews and then started to think about and articulate the systems of thought and experience that underpinned them.
Bill's narrative of Self tells of a lifelong struggle against authority and other's perceptions and attitudes towards him as ‘disabled’, through which he asserts and projects a range of ‘non-disabled’ personae:
Well you see, with me, I'm, I'm independent. I don't let nobody outside, or in me own house or anywhere tell me what to do; 'specially social workers, I don't do nothing at all what they want me to do. I do as I want … See, when you're disabled people'll try to rule over you if you let 'em. (Bill)
The private space of Bill's home provides respite from his struggle with authority and his experience of oppression. Cross-dressing enables him to adopt a female persona which gives him a feeling of peace:
But it's not all the time. Just when I feel like it y'know. I've always wanted to be a woman, 'cos of me circumstances. Because I'm not interested in women whatsoever. I wished I was a woman tell the truth. Because, simple reason is. It makes me relax. Makes me a lot calmer than ever. (Bill)
Outside of his home, Bill's struggle is conducted through his actively seeking acknowledgement of his full and equal citizenship in public spaces:
We go to a cafe in town called [name] caff. I'm respected by the gaffer there. We have a laugh and a joke, we pull each others; we wind each other up. And she respects me, like you do yourself, like I'm a human like; equal, not second class or something. (Bill)
Fay's narrative of Self can be characterised as ‘the good life’. Its origins are suggested within memories of early childhood:
Well my father had a cycle shop, and radios and old-fashioned gramophones. He'd always do that, and we've got a photo of my sister and I standing outside the shop with he and my mother in a big old car. And I can remember going out in that, he must have had that for some time … Yes, he said there were only two people in [town], that's where we lived, it's in [county]. He said there was only one other car and his at the time. (Fay)
Fay's sense of Self is strongly linked to her relationship with her late husband, Paul. There was much happiness during their 64 years together. Fay has no trouble in identifying the source of that happiness and reflects upon it with great pleasure:
Just because we loved each other I suppose. And we really did. I was 16 I think when we started going out together. So, it's nice looking back on everything. (Fay)
Fay is very actively engaged in a process of remembering her past and reflecting upon her life. Objects play an important part in stimulating memories and many are invested with special meaning and significance. Unsurprisingly, pleasant memories that confirm a good and successful life are brought to the fore. Upsetting memories and thoughts are given less attention. The days that Fay feels too unwell to do this are invariably days that she feels down and begins to worry. This can disrupt her narrative of Self:
I've been poorly this week and it's got me down. And that's when I miss Paul even more, and I start to worry about things; the children. Because two of my children are divorced, and one married. But the two that are divorced, you know, I worry about them a bit. They seem to be happy enough on their own. But, well I can't do anything about it anyway, but I do think of them and I'm sure they wish they had a man with them. (Fay)
Accommodation of ‘special requirements of Self’
Special requirements of Self are preferred modes of interaction and specific activities that serve to validate the narrative of Self and its underlying personal constructs. Older people in the study were required to enter into relationships of care, not by choice but by circumstances in which their bodies had become so frail that they could not perform essential activities of daily living without assistance. These un-chosen relationships necessarily involved a degree of intimacy in terms of interaction with participants' private lives and often with their bodies. Relationships in which paid carers demonstrated empathy with participants and interacted with them in a way that validated their sense of Self became established and endured; being highly valued by participants. It was in this sense that participants experienced ‘personalisation’. The accommodations that participants had achieved with their paid carers were highly idiosyncratic.
One of Bill's special requirements of Self relates to his sexuality. In the past, others, including a social worker, have expressed their disapproval at Bill's use of pornography and sex workers. This is an offence to Bill's sense of Self because he links it to their perception of him as disabled and interprets their attitude as an attempt to impose an asexual identity upon him. But Bill is not asexual and is not prepared to act as such for the comfort of others. Sarah accepts Bill as a sexual being and does not pass judgement on his choice of sexual expression. Although there is no spoken agreement between them, Sarah varies the order of her routine on days that Bill arranges for a sex worker to call so she can be absent for the duration of the visit:
Yeah. Sarah goes out. Me bit of stuff comes in. That's it … She says what I do is what I do. You know, she don't interfere with my business. (Bill)
In fact, Sarah does more than not interfere. She facilitates by preparing Bill for the visit and helping him to shower and dress afterwards. This is part of an accommodation that Sarah provides to Bill which is characterised by her respect for his privacy and being non-judgemental of him. Sarah's acceptance of Bill's female persona and facilitation of cross-dressing (discussed earlier) represent another aspect of this accommodation of home and private life.
Sarah offers another accommodation in response to Bill's special requirement of Self concerning use of public space and assertion of citizenship. Sarah spends many more hours with Bill than she is paid for. She takes him out nearly every afternoon in the car, to cafes, the seaside, the zoo; they are planning a trip to Birmingham in the summer to visit Bill's mother's grave. Bill has a very clear picture of what his life would be like without Sarah:
If I didn't have Sarah it would be bloody terrible. Because the people who would have come and helped me would have done that, done; got me up, in the chair, and they would have gone. They would have gone 'til the next times its due. (Bill)
One of Fay's special requirements of Self is facilitation of activities of remembering and reminiscence, which links to her narrative of ‘the good life’. Fay looks at photos and re-reads old letters to stimulate her memories. There is nothing unusual in that, but the level of purpose Fay devotes to the activity is rather unusual; it goes beyond an occasional flick through the family photo album. Fay devotes time most days to look at a particular set of photos, a particular letter or some other object that will help to give a specific memory greater focus and clarity. Julie intuitively understands this as an activity of importance to Fay's sense of Self:
Memories, yeah she's got; well, she could have newspaper clippings from when she was; something that's happened at school. Everything she's got, she keeps absolutely everything, don't you. And she always knows where everything; well did know, where everything's to. (Julie)
Julie accommodates Fay's special requirement of Self by facilitating her activities of remembering and reminiscence, making time to retrieve objects of memory and/or arranging/re-arranging them in response to Fay's requests according to a particular group of memories she wishes to focus on. The last sentence in the extract above refers to Fay's daughter ‘tidying up’ during her current visit (at the time of the second interview). The rearrangement (misalignment) and disappearance of objects that contain memories is disorientating for Fay. Julie will no doubt restore things to their proper order when Fay's daughter leaves:
Yes (alarmed). School yes, I wanted a picture of school friends from school just recently, and Julie couldn't go and get it for some reason. So my cleaner got it yesterday and brought it down. That's it there. And I've just found, last evening that the box file, that I thought had my papers in; my marriage certificate and my parents' marriage certificate and things like that; it's not there anymore. It should be out there on the [bookcase]. Whether one of the children has taken it; which they would be welcome to. But whether it's just been put upstairs and I don't know where it is. (Fay)
Helping relationships as the locus of personalisation
The locus of personalisation was found to reside within the interpersonal dynamics of helping relationships rather than control over the means of procuring services. Participants experienced personalisation when paid carers perceived and accommodated their special requirements of Self. This happened over an extended period of time and was achieved through interpersonal communication involving intimation, demonstration, perceptivity, receptivity and tacit negotiation between participants and their paid carers. In six of the eight cases the relationship of care had developed prior to the direct payment being awarded. In four of the eight cases other services being provided outside the scope of the direct payment were being experienced as equally, if not more, ‘personalised’ as those purchased with the direct payment.
Bill was frequently let down by the council-commissioned care agency until one day Sarah was sent to attend to him:
The first day I come here. I got a call from [care agency], I was on a day off. I got a phone call at 2:00 in the afternoon. Nobody had been to him; he's supposed to have a 7:30 call. You know a lot of people let him down. That's why I said to him, I said, ‘I'm not gonna let you down Bill, I'm gonna stand by you’. (Sarah)
It was Bill and Sarah together who made the choice to move to a direct payment arrangement:
So I said, ‘right’, we had a chat about it, and agreed like and afterwards I said, ‘right, that's it we're going straight down the line, we'll go straight to direct payments'. Should have gone in for direct payments years ago. (Bill)
Whilst the vehicle of the direct payment provided the stability that enabled Bill and Sarah's relationship to deepen and become more personalised over time, the potential for a mutually satisfying interdependence was recognised by each of them at an earlier stage and had started to be realised before the award of the direct payment. They agreed together to use the direct payment as a means of developing it further; it was not Bill's unilateral choice. This is not to argue against direct payments or against the wider ‘personalisation agenda’; in many ways it demonstrates personalisation in a very positive light. However, in doing so, it also challenges the idea that the award and use of a personal budget/direct payment will inevitably lead on to the actual experience of personalisation. This raises questions about the sequencing of practices in which ‘up front’ allocation of a personal budget comes before the establishment of a helping relationship that holds the potential for an authentic and reciprocal experience of personalisation.
The origin of Fay's relationship with Julie also pre-dates the award of her direct payment. When Paul was first unwell, around eight years ago, Fay employed Julie privately to help her to care for him. After a few years Paul's needs had increased significantly and their savings had diminished. Their daughter asked the council for help and Paul was awarded a direct payment, which the daughter agreed to manage. It was used to pay for Julie's services. As more time went by, so Fay herself required assistance and eventually she too was awarded a direct payment which was also used to pay for Julie's services. When Paul died, Fay's direct payment continued. Julie describes the process:
Yeah. So, and then Fay went on, two years ago? Yeah; about two years ago … While we were here we were still doing work, but doing it for Fay, and not realising that she was deteriorating as well. Because we was, you know, getting one breakfast and getting one up, we just automatically done it. And that's when we called in social services again then, and then they put Fay on the books. So, now she gets it paid for her now. But, she, they only let her have three visits a day; they wouldn't let her have the four. (Julie)
Once again, this is not to offer an argument against direct payments or against the wider personalisation agenda. Rather, it illustrates the very positive benefits of systems that enable personalised relationships to develop in a way and at a pace appropriate to individual circumstances and to endure and adapt over a long period of time. It also emphasises the importance of flexibility in the sequencing of personalisation practices. The social and emotional context in which older people frequently come to need social care services may make the idea of ‘try before you buy’ sound a little crass; but it may be precisely what is required to make personalisation a meaningful prospect for many older people.
The longevity of personalised relationships experienced by many of the participants in the study often gave them a special character. This frequently went well beyond the contract of employment or terms governing purchase of services and involved a strong affective component (see Ungerson Reference Ungerson2004). In a number of cases paid carers had themselves become a part the participant's narrative of Self. In Bill's case, Sarah is not just an ally in his struggle against authority but someone he has himself helped to free from the clutches of authority:
I'll tell you one thing about direct payments though, it's brilliant, because I'm me own boss, Sarah's her own boss. We don't have to bother with no care company telling us what to do. (Bill)
For Fay, Julie provides an active link to the time when Paul was alive and shares precious memories of him. The last few years of Paul's life, when he suffered from advanced dementia, were very difficult for Fay. The care that Julie provided to Paul and her recognition and support of Fay as his carer helped Fay to maintain her narrative of the good life during that difficult time and afterwards. It has earned Julie Fay's enduring gratitude and a place in her narrative of Self:
Just saying Julie, you did some really hard work with Paul didn't you. I don't know how things would have turned out without you. (Fay)
Prerequisites of personalisation by accommodation
In order for accommodations to develop, it was necessary for relationships of care to become established according to a set of essential conditions. Participants in the study were first and foremost concerned that the people who came to their homes to deliver social care services: (a) could be relied upon to attend at agreed times; (b) treated them, their loved ones and their home with respect; and (c) performed the tasks of care for which they had been engaged competently and with regard to their (the cared-for person's) dignity.
These were basic expectations of all participants for all care provided by people who were not members of their family. Sometimes they were expressed very explicitly; sometimes less directly, being implicit in participants' descriptions of what they were seeking from paid carers. Dignity was described in terms of being offered proper attention without being made to feel vulnerable, embarrassed or belittled. Caring relationships that did not meet these requirements were not acceptable. Participants frequently cited examples of relationships that had failed because one or more of the basic conditions had not been met and contrasted these with the qualities and conduct of paid carers in relationships in which successful accommodations had become established.
An important factor in Bill's decision to accept a direct payment in order to employ Sarah was lack of necessary skills amongst the agency carers who had been attending to him. Bill can transfer using a banana (sliding) board as long as the carer sets it properly and holds it steady during the transfer; they do not need to take his weight:
They couldn't get nobody to help me. And they couldn't get the girls to come and help me. They said I was too heavy. I said, ‘why am I too heavy?’ ‘Oh, because you've got no hoist’. And they didn't know how to use a banana board. And I said to them, ‘what they in the bloody job for if they can't do things like that?’ (Bill)
Fay was fortunate in that Julie met all of the basic conditions from the outset of their relationship, but her daughter was very aware of how things could be different and often reminded Fay of it:
Yeah, I think we're lucky. We're lucky in as much as we've got a constant girl, who Mum gets on with. You know, I know an awful lot of people don't have that available to them. They have to take whatever is given … And I do say to Mum that she's lucky in as much as who she has come in. (Fay's daughter)
It is noteworthy that the prerequisite conditions cited above are very often presented in personal stories as successful outcomes of personalisation (see e.g. Carr Reference Carr2012; Department of Health 2010; Skills for Care 2009). This study suggests that they might more appropriately be considered as the starting point for it. They may be regarded as ‘essential satisfiers' (Pollack Reference Pollack2008) or constituting the threshold of the ‘zone of tolerance’, below which a service will be rejected by any consumer capable of exercising meaningful choice (Parasuraman, Berry and Zeithaml Reference Parasuraman, Berry and Zeithaml1991; Zeithaml, Berry and Parasuraman Reference Zeithaml, Berry and Parasuraman1996). Participants wanted services to meet these basic requirements and to go beyond them; to pass into the ‘zone of desirability’ (Parasuraman, Berry and Zeithaml Reference Parasuraman, Berry and Zeithaml1991; Zeithaml, Berry and Parasuraman Reference Zeithaml, Berry and Parasuraman1996; see also Schwartz Reference Schwartz2004). This was achieved to varying degrees when paid carers perceived and sought to accommodate special requirements of Self. Once again, this raises questions about the need for greater flexibility in the sequencing of personalisation practices.
Risk and dilemma in personalisation by accommodation
When paid carers perceive and accommodate special requirements of Self they realise opportunities for personalisation; they validate the cared-for person's narrative of Self and the personal constructs that give rise to it. However, there is risk and dilemma in this process. One risk is of over-accommodation leading to exploitation. Sarah spends many more hours with Bill than she is paid for. Bill recognises this as additional to her paid employment and is grateful, but does not entirely separate it from her role as paid carer:
…she drives me all over the place, 'cos that's my car out there, she does all the driving for me, which I do appreciate, and she don't get paid for that; but she's a very, very good carer. (Bill)
It is an interesting point as to whether Sarah herself experienced her unpaid facilitation of Bill's social life in terms of feeling exploited. Paid carers' perceptions of accommodating special requirements of Self fell outside the scope of the study, but certainly presents itself as a focus for future research. It appeared (to the author) that Sarah took something very significant from her relationship with Bill, which served to validate her own sense of Self and compensate for any exploitation she might have felt (more is said about this below). Whilst there is undoubtedly an inherent risk of exploitation in personalised relationships, the findings of the research demonstrate that the boundary between exploitation and reciprocity is very hard to plot; reciprocity being a very positive feature of relationships that become truly personalised.
Notwithstanding the above, the risk of exploitation of paid carers was significantly increased by the common practice of allocating the minimum or less than the minimum level of funding required to meet actual needs. Apart from limited acknowledgement of the needs of unpaid carers, assessment was focused on participants' bodily needs. In some cases this included domestic tasks associated with bodily maintenance, i.e. cleaning and shopping. In most cases it was clear that social and psychological needs were not properly addressed and there was an overt concern to restrict the level of resource to be offered. Julie has taken on the additional role of Fay's advocate to make it possible for her to provide the care that she knows Fay needs:
You get the minimum. Like she used to have a half hour in the morning visit, but you couldn't get her up, get her out of bed, showered, get her breakfast, tablets, cup of tea, make the bed, do the commode, all in half an hour. So we managed to get an hour for that. (Julie)
Other examples of risk and dilemma involved issues of confidentiality and observance of professional boundaries; the point at which informality in helping relationships becomes disrespectful or worse; and continuing recognition and support for unpaid carers who accept payment for a small proportion of the total care they are providing. Bill's case also raises the difficult question of competition between the needs of carer and cared for, and which party's special requirements of Self are being most accommodated:
Bill: But Sarah, I couldn't wish for a better carer. She's absolutely incredible.
Interviewer: Because she just accepts you for who you are?
Bill: Yeah. That's right; without any doubt at all. She said to me the other day, she said, ‘if anything happened to you’, she said, ‘it'd break my heart’. ‘'Cos’ she said, ‘you're the only person I trust’.
Interviewer: Sarah said that to you?
Bill: Yeah. She said, ‘I've got no friends really’. But, she has got friends, like church and that, but I work with Sarah, we work together, we're happy together. The reason why we went to direct payments is because we got let down so many times by the company.
Summary: personalisation by accommodation
Personalisation by accommodation is an interactive process between paid carer and cared for. It is premised upon a willingness and capability on the part of the paid carer to provide care in accordance with a set of prerequisites, which do not constitute personalisation, but without which personalisation is not possible. Briefly, these are: attending at agreed times; being respectful of home and loved ones; being competent to perform specified tasks of care; all of which to be carried out with due regard for the cared-for person's dignity. Only when these prerequisites are met is it possible for a personalised relationship to develop.
This involves the cared-for person and their paid carer developing an understanding of each other such that special requirements of Self can be expressed and possible accommodations be offered. This is best thought of as a process of discovery. The cared-for person is unlikely to be fully aware of their special requirements at the outset of the relationship and therefore unable to articulate them in a straightforward way. Similarly, the paid carer does not know what special requirements are likely to be presented and therefore cannot know what accommodations they may be willing and able to offer.
Discovering special requirements of Self is therefore an ongoing process of drawing out immanent knowledge of needs and ways of meeting them conducted through imprecise forms of interpersonal communication involving processes of intimation, demonstration, perceptivity and receptivity. It requires considerable skill from both parties, but especially on the part of the paid carer upon whom the greatest onus is placed for needs to be met in a satisfactory way. It is an ongoing process of refining accommodations that become established, adapting them in response to altered needs and developing new accommodations in response to newly emerging needs. Personalisation by accommodation is effected within the relationship between cared-for and paid carer, which is largely conducted in private. It requires a significant degree of connection, attachment and reciprocity, and therefore carries risks of over-accommodation and/or false accommodation (where the paid carers special requirements are accommodated before the cared-for persons).
Conclusion
The idea of personalisation by accommodation provides a helpful perspective to further the development of policy and practice designed to provide older people with meaningful experiences of personalisation. It draws attention away from the structures and processes that are principally concerned with the facilitation of market consumerism and back towards the nature of the person that is the subject of personalisation. In doing so, it lends greater support to care ethicists' concept of person as an encumbered, interdependent and contingent member of family and community, than to that of neo-liberals' rational and self-serving individual. Self is made and seeks validation through connections with other Selves. It may be thought of as rational and Self serving, but in a subjective way aimed at maintaining its unique narrative of Self, rather than as objective ‘benefit maximiser’.
Personalised relationships are not the inevitable outcome of delegating control of cash and/or resources to older people with social care needs and ‘empowering’ them to ‘consume’ the social care services according to their individual preferences. Rather, control of a personal budget can improve the prospects for promising helping relationships to realise their full potential for personalisation, but are not essential to the process of personalisation by accommodation.
This offers a number of challenges to current policies and practices of personalisation, the most obvious concerning the issue of how choice is conceptualised. Choice as an ongoing process of discovery of immanent knowledge of needs and possible accommodations is contrasted with choice as a one-off process of selecting a service and provider, based on up-front knowledge of needs and service offers. Without dismissing the importance of the latter form of choice altogether, it might be regarded as more superficial than the former. At best, it allows for selection of services and providers most likely to meet the prerequisites of personalisation. A system of ‘try before you buy’ may provide a route to more informed choices and more meaningful and sustainable experiences of personalisation. It could also provide a less destructive means of discontinuing relationships that do not hold the potential to become personalised, compared to the market mechanism of ‘exit’.
It is important to recognise that personalisation through consumerism ultimately relies upon personalisation by accommodation in order for the individual concerned to experience validation of their narrative of Self. This emphasises the importance of ensuring quality in care services over developing the quantity of choices available. Being able to make a choice from a wide range of poor-quality services/providers is less likely to result in the experience of personalisation than a more limited choice from a smaller number of good-quality services/providers. ‘Quality’ in this context is determined by the ability of front-line paid carers to perceive special requirements of Self and the existence of conditions that allow them to negotiate/implement sustainable accommodations with the person they are caring for.
This, in turn, requires that paid carers are properly prepared for and supported in those activities. Ethical employment practices, providing training to high standards and sufficient time to do the job must be supported by sustainable commissioning strategies that purchase services at realistic prices and prioritise the experience of service users over savings to the public purse. Continuing challenge to the rhetoric of personalisation as ‘more for less' is necessary to realise the aspiration for social care services that are genuinely experienced as personalised. That aspiration is unlikely to be realised if individual assessments of social care need are conducted as exercises in limiting eligibility for help from the state and/or restricting the value of the personal budgets that follow from them. Personal budgets that do not adequately provide for the full range of needs that can legitimately be deemed to be eligible in each individual case damage the prospects for authentic and sustainable personalisation.
Acknowledgements
Many thanks to Misa Izuhara and Liz Lloyd for their help and guidance in the preparation of this paper and the doctoral dissertation from which it is derived. Ethical approval was obtained via the Research Ethics Committee, School for Policy Studies, University of Bristol. UK.
