Context leading to the decision to take up DPs

Overall sample

The interviewed users reported a number of different circumstances that surrounded their decision to take up DPs. These circumstances can be grouped into two broad categories. The first refers to contexts of deteriorating health conditions, or the collapse of existing care arrangements leading to a potential unmet need for care. These examples are in line with Glendinning’s (2008) reference to making decisions about whether to take DPs in a context of duress. The second category refers to dissatisfaction with care provided under the previous

32 LA-managed care refers only to home care in this context and not community care such as day care centres.

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care arrangement, mostly by agencies providing LA-managed care. The latter was perhaps the strongest narrative, as most users had some contact with LA-managed care before being offered or requesting DPs. Each of these categories is analysed in turn.

Many interviewed users described situations beyond their control that had triggered the option or offer of DPs during a time of duress. Among these were deteriorating health conditions. Often, their health had suddenly deteriorated after an acute health episode such as a fall or surgery, but there were also cases of slow but continuous health decline that eventually reached tipping point (e.g. deterioration of symptoms related with dementia).

Apart from changes in their health condition, users also often came into contact with DPs after their existing care arrangement had changed due to circumstances beyond their control.

This included the deterioration of the health condition of the family carer that was also the main carer, the inability of the family carer to continue caring due to changing life circumstances (e.g. because the family carer moved to a different location), or exhaustion by the main family carer. Changes in the care arrangement could also involve professional carers, such as those employed by agencies, following dismissal or the ending of the contract between the LA and home care agency.

In these contexts, interviewed users referred to the impact that the sudden changes had on their state of mind at the time when many of them first came into contact with DPs. Feelings of anxiety were often mixed with pain while users tried to adapt to their new circumstances:

“I’ve suffered a lot with anxiety and that sort of thing, it was very bad originally after I had the accident, it just knocked my confidence off everything” [LA#3 011, male, purchaser, aged 66].

The other broad reason for taking DPs was linked to dissatisfaction with the care provided until that point. All the complaints were directed to LA-managed care provided by home care agencies, except in one case where it referred to privately paid care also provided by a home care agency. The complaints focused on two main aspects: agency carers and timing.

Regarding agency carers, the complaints centred on lack of continuity and their disrespectful or inappropriate conduct. A frequently voiced complaint was that agency carers would often change because of high staff turnover in agencies. This meant that users were not able to build a relationship with agency carers. This was referred to by interviewees from all user types – and new carers sent by the agencies would not be familiarised with the user’s preferences or care needs. They also reported impolite behaviour and refusal to do tasks that were outside the care plan. However more often complaints referred to “uncaring” agency

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carers or lack of interaction with users; the latter a typical complaint among relatives of users with dementia:

The carers that were coming in were awful, they didn’t speak to mum. The ones that were coming in, they need to come in and say, “Hello [name omitted due to confidentiality], how are you?” And make… they wouldn’t get much response but they might get a smile. [LA#3 010, female, purchaser, aged 87, proxy with user]

Complaints with timing revolved around issues of reliability, or rather lack of it – agency carers that were late or simply failed to show up – and around what was felt like time-trial care with agency carers rushing to deliver care and/or providing less hours than they were supposed to:

And we put up with it for a long time, even when, you know, they were not on time or they wouldn’t come, you see. And they wouldn’t phone up and say that they were going to be late or whatever. [LA#3 002, female, purchaser, aged 80, proxy with user]

The users were often understanding of the reasons which led agency carers to be late, such as lack of own means of transportation, or carers being overworked by agencies, but this still caused palpable dissatisfaction.

What was common to most discourses around dissatisfaction with care was also that users felt the inability or unwillingness of agencies or LAs to bring about change, i.e. to act on the causes of dissatisfaction and to improve the service. The complaints about the revolving door of agency carers, the tardiness of care or inappropriate care, were accompanied by narratives of repeated and frustrating contacts with the agencies or LA staff. These complaints had been met with replies ranging from sympathetic and apologetic to outright dismissive, but the end result was that users did not see any improvement in the care they received. In some cases, it was clear that users welcomed the DPs, when they eventually came into contact with them, as a way to “opt-out” of their current care arrangement or to limit their contact with what they perceived as unresponsive LA-managed care.

Changes in the health condition or caring arrangement and narratives of dissatisfaction with care were not mutually exclusive. Often the sudden deterioration of the health condition heightened the complaints or the unsustainability of care provided by agencies.

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While changes in health or caring circumstances could be sudden and trigger irreversible changes in the life circumstances of users, the dissatisfaction with care provided under LA-managed care was of a more continuous nature. In light of this, one issue probed during the interviews was whether users who did not experience a sudden change in health or caring conditions had more time to gather information about DPs and eventually think about how best to use them. Users that had been dissatisfied with care for a longer period of time did not seek to gather information about DPs more actively, according to their own accounts, nor did they take more time to consider their options. The views of interviewees regarding this matter are well exemplified by the following narrative:

Until you are in that situation you are not going to know. Really, if someone had told me about five years ago I would have said "Why are you telling me? It's got no relevance to me." You only start looking into that once you are in that situation. [LA#2 004, female, purchaser, aged 77, proxy with user].

The users that had previous knowledge about the existence of DPs or a deeper understanding of their workings had acquired this information mostly by chance in previous contexts of their lives, for example, through previous employment in a nursing home or by being the representative of the users of a day care centre. These users had later demonstrated a better knowledge of the workings of the DP (e.g. how to spend and manage the DP) and had been able to use this to their advantage, as it will become apparent in latter sections. To borrow from an expression applied to health care, they were “expert users” (Greener 2007). Only one family said that they had gotten hold of information on DPs on their first contact with social services and then used this information much later when their older relative’s savings were exhausted and they re-applied for publicly funded care. They provided a rare example of having had more time to think about their options.

One arguable advantage that users with a long track record of complaints had, was that they might have had more concrete ideas about what they wanted to address with DPs, i.e. more time to form their preferences, be it continuity of carers or timely care.

The circumstances surrounding the first contact with DPs seem to suggest that interviewees with previous experience of LA-managed care were somewhat unsatisfied with the inability to develop some connection with their agency carers – i.e. lack of continuity – which provides already some clues as to the significance of the relational aspects of care that are salient to the first hypothesis under study. Possible differences in this respect between groups of users are explored next.

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Differences and similarities between different groups

On the surface at least, the narratives of purchaser users showed them to be as critical of care previously provided by agencies – in the context of LA-managed care – as the other users who had previously received such care. The main complaint of purchasers, however, was linked to unreliability, i.e. with carers from agencies showing up late or not showing up at all to provide the care they required. Complaints regarding continuity were rarely present in the narratives of purchasers regarding the care previously provided from home care agencies.

This is in contrast with the relational and employer users’ narratives. These users often referred to the lack of continuity of agency carers and their inability to establish a rapport as their main criticism of the care provided by agencies. These issues featured particularly high on the list of complaints of relatives of users with dementia (albeit not exclusively and not among all relatives of people with dementia). Purchasers seemed to have attached less weight or to have been less critical of the relational aspects of care provided by agencies.

For employers, it was clear that one important issue had been the experience of significant constraints in accessing care services that met their needs, i.e. to find agencies willing or able to carry out the tasks they required. This was one issue that was not so apparent when analysing the narratives of the sample as a whole – as seen above – but that featured clearly among employers when comparatively analysing the narratives of the different types of users. The following transcript illustrates one example of this, as the interviewee expressed difficulties in finding agency carers qualified to handle a particular condition:

The agency then sends a set of lines on how wonderful their staff is! Competency this and that and HIV trained. They can probably do brain surgery and maternity care in the desert! Who says so? Where is the evidence? No checks! [LA#2 007, male, employer, aged 64]

The comparative analysis of the narratives of different types of users seems to indicate differences regarding what each had found as particularly lacking in LA-managed care that relates to the research question of this study. In this respect, it seems that purchasers valued less the relational aspects of care than the employer and relational users. At the same time, employers seemed to have previously had greater difficulty in accessing suitable care. What follows is a more detailed analysis of the initial choice of home care agency or PA made by the interviewees.

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6.3.2 F

,