Sample

The participating care homes are described in table 1. All of these were dementia registered. Two had formal healthcare provided by a single GP practice, with whom all residents were registered. The remaining homes had relationships with multiple practices. None of the homes had private contractual arrangements with GPs.

Early in the course of the analysis, the relationship between care home managers and GPs emerged as pivotal in the delivery of all aspects of healthcare. In line with theoretical sampling we therefore sought out more participants from these two groups as the study progressed in an attempt to better understand these relationships. Likewise fewer participants from the wider primary care team were sought. Thirty-two interviews were conducted: seven care home managers (one home had a different manager for its residential and nursing and both were recruited), two care home staff nurses, nine care assistant, six GPs (one for each home), three members of dementia outreach teams, two district nurses, two advanced nurse practitioners and one occupational therapist.

Coding framework

The accounts offered by participants helped build a picture of healthcare that took place as a composite of the formal contributions of health professionals and the less formal work of care home staff. The provision of formal healthcare was, for the most part, driven by unanticipated deterioration in residents’ health status, rather than being anticipatory or preventative. The care given by the care home staff, although often labelled as social care, was commonly targeted at health problems or at the maintenance or restoration of health. All participants expressed concern for residents and patients, acknowledging the considerable challenges of caring for frail older people at the end of their lives but attributing shortcomings to aspects of the system, rather than the residents or patients themselves.

The main themes of the analysis (Otable 2) explain why there are such shortcomings and uncovered barriers to providing effective healthcare in care homes.

Analytic themes were finally expanded and organised under the following headings:

• Complex health needs and the unpredictable nature of residents’ illness trajectories.

• A mismatch between healthcare requirements and GP time.

• Reactive or anticipatory healthcare?

• A dissonance in healthcare knowledge and ethos.

• Tensions in the responsibility for the healthcare of residents.

Complex health needs and the unpredictable nature of residents’ illness trajectories

Several participants suggested that the health profile of care home residents has shifted over the recent past. Nursing home residents now resemble those previously cared for in long stay hospitals, and residential home occupants those previously cared for in nursing homes. Well I mean, I think the main changes people who have got, become more dependent, I mean hugely dependent, whereas, I mean when Kimpton Lodge opened most people could walk independently some would use zimmer frames. We didn't have anybody initially that needed hoisting. We bought our first hoist in '91 and that's sufficed for about 10 years I think it was. And now we've got hoists coming out of everywhere. I mean we just haven't got the space to store them basically. (Care home manager 5)

Participants suggested that higher levels of support in the community were a key reason for the increasing dependency of the cohort as a whole. But I think the big change in the last ten years is that we are taking people into care homes much further on into their dementia than we ever used to. Because people are being cared for much longer at home with good care packages going in, lots of family support… So I think that's helpful but I think we are getting people coming in, you know, much more moderate to advanced than we ever used to, so care homes are filling up with quite dependent, quite challenging people. (Outreach dementia care team)

All of the participants argued that the health profile of care home residents has shifted significantly over the recent past. Nursing home residents now resemble that of long stay hospital patients (no longer in operation), and residential home occupants that of nursing home residents. Care homes residents were perceived to experience complex illnesses with high levels of health and social need. Although the vignette used in the interview referred to a minor illness in a presumed long-standing resident, participants often raised admission to the care home as a particularly difficult time. We've got a lady about to be admitted to us, she's obese, lymphodema, chronic obstructive airways disease, continuous oxygen, they've put in a caecostomy tube, she's catheterised, she's in bed, she's feeling nauseous all the time, she's hasn't been out of bed for 5 months, as far as I'm aware she hasn't got any pressure sores but she does tell me that her bottom's very sore. (CHM4Nurs)

Ongoing healthcare of residents, of the sort discussed in the interview vignette, was recognised as part of the core work of both care home staff as well as GPs. All participants, from health professional as well as social care backgrounds, found it difficult and challenging at times, to interpret the significance of changes in the symptoms of residents who usually had multiple and chronic health conditions. I had one of my residents admitted last week to hospital with, and we thought she'd had a stroke. It was a UTI. (CHM1Res)

Participants also frequently spoke of death and dying as being difficult to predict. Because one day, they can be fine, the next day, they stop eating, and then they could linger for months, or the next day, they could die. (GP3) She seemed alright, and all of a sudden she had a funny turn during tea, and so we put her in a wheelchair as quick as we could to get her out of sight from the others you know, because they can't understand what's happening and it upsets some people, and we put her in her bedroom, and we had to dial 999 and the lady actually died before she got to hospital. (CA5Res)

Participants reported the negative effect of poor information transfer to care homes, particularly around admission and discharge from hospital. There was a mistaken expectation held by hospital staff that further management and additional healthcare such as speech and language therapy, occupational therapy and physiotherapy would be easily accessible to care homes.

For newly admitted residents, transfer of patient notes from one GP to another could be delayed for weeks, delaying crucial information for safe care and management. ... Complete disaster, when she moved into the home, took us ages to get hold of ... her old records. And the staff at the home thought she'd got diabetes. But in fact she had diabetes insipidus ... (GP1)

There was a mismatch in healthcare requirements and GP time. GPs described visits to care home residents taking up a substantial amount of their workload. 10% of our elderly patients are in care homes, and 10% of our population are over 75... we have at least two to three out of the average of 10 visits a day are to care homes (GP3)

Two patterns of primary care organisation were evident in our data. The residents of the two rural care homes were served by single GPs, whereas the urban homes were served by several GPs from local general practices. Having a one-to-one relationship with a single GP in rural care homes arose out of geographical necessity and was praised by all respondents for one home while being roundly criticised in the second example. For the former, a constructive working relationship was described, defined by frank and open discussion of differences around patient care and a history of joint initiatives between the GP and care home to improve healthcare for residents. Because we do it that way, we do get to know the patients…one GP practice covering the whole nursing home, I think also works because the nurses know what to expect when they call the doctors. I mean, they know us and we know them. (GP4)

The relationship at the second home was defined by mistrust, conflict and reluctance on behalf of both care home staff and GP to engage with each other. The sense was that a one-to-one relationship would not have been chosen were it not for the geographical necessity. Yes they [the care home] are hard work…all the other GP's have said, ‘No,’ so we are lumbered with it. What we did propose was that we have half the patients in [the village] and let's have half the nursing home people, but no, all the practices have turned round and said, ‘No, it's not in our area’. Of course it's in their area…(GP5)

Multiple GPs assigned to each care home, and reports of the variable attitudes and skills of GPs, made communication and developing relationships problematic. We have seven GP surgeries looking after our residents…well sometimes I'll pick up the phone and I'll speak to a GP, I don't recognise your name doctor, are you new there? (CHM2Dual)

The suburban GPs in our sample could see some advantages in organising a one-to-one relationship in terms of facilitating a relationship with care home staff and getting to know their patients better. But they also perceived barriers to this approach in the form of patient choice and organisational issues with neighbouring practices. it's a relatively new home that…started about three or four years ago in the area, and what we're doing with them is we've actually said to them, we're prepared to take on ten of your patients but after that, it becomes too much of a sort of, too much of a burden really, because it's a, it's a specialist dementia home and they're very difficult management-wise (GP1)

Reactive or anticipatory healthcare?

The rural care home in our sample with an effective one-to-one relationship with the GP had regular scheduled visits to the home. These were perceived to enable efficient, anticipatory care and reduce out-of-hours care. However, the remainder of the homes studied did not have regular scheduled visits from their GPs. Two of the urban GPs had previously attempted to establish these types of arrangements with local care homes but had abandoned the custom, concluding that it had no effect on calls from the home between scheduled visits. In the past, we used to try and do anticipatory things like a little ward round once a week. And I think we just found that it wasn't making a lot of difference to just letting the staff call us when they needed help. So we were putting more hours in without seeing very much for it. (GP1)

For some care home managers the concept of weekly visits was unhelpful because they considered that their residents sometimes fell ill without warning, and it was at these times they required support. two weeks ago one of the doctors sent a letter…saying that the doctor gets called out on numerous days for minor issues, and they want to come just once a week, so I phoned up the practice manager and said, ‘I cannot tell you when a resident is going to be ill, that's fine, I'll call an after hours’ doctor out, you'll get charged.’ So they know they have to visit, when I want a doctor, a doctor comes. (CHM6)

Given the reliance on a system where care homes called GPs reactively, care home staff were concerned when access to primary care was poor and slow. There is always a time limit sometimes you have to call before 10, but if something like that after 10 I have to do it myself because I have to use my charm again with the [receptionist] there, so that they can book it immediately. So I just have to say, ‘I know I'm a bit late, but you see it's a bit of an emergency here’. (CHM2Dual)

Efforts to protect GP time were made. For example, some homes accumulated individual issues for the GP to attend to in one visit and one care home manager took residents to the surgery if their condition allowed. Although well intentioned, these practices could have serious implications for residents’ well-being. Somebody was almost moribund when I went to see them, and you know, the visit had been put through to reception as just a routine sort of unwell sort of thing, the receptionist hadn't realised quite how unwell, just put it down for a routine visit. (GP2)

A dissonance in healthcare knowledge and ethos

Staff in care homes, which are social care institutions, are trained at least to meet the minimum standards of social care required by regulation. It was obvious to care home staff that this did not equip them to deal with the healthcare needs of their residents. Some of our residents do have some really complex healthcare needs and, and obviously, because we're not a registered nursing home and we're not healthcare professionals, we're really dependent on the service we get from GPs, (CHM1Res)

Some GPs highlighted a link between social care training and the inability to identify healthcare problems, with consequences upon residents’ well-being and GP time. The staff particularly in a residential home, are not trained medically so they, they might see there's a bit of a change in a resident but think, ‘Oh well, they're just having a bad day today, we'll wait a little bit longer.’ And that, you know, we kind of want them to do…It's difficult to get the balance right…very difficult…for them to try and anticipate when people are becoming ill and call us in to pick things up earlier. (GP1)

Healthcare staff often attributed what they considered to be inadequate training of care home staff to the ‘profit motive’ of care homes operating in the private sector. But they're privately employed and there's always, there's always these issues, isn't there, about, I suppose, well, as a, what you read in the papers, there's always the issue about owners wanting the maximum profit, and therefore the minimum staffing and all the rest of it. (GP2)

Despite this, GP training and skills were also felt to be inadequate, or as one GP candidly put it. The average General Practitioner isn't experienced enough…and you need a, basically another specialism going in and I think that would deliver better care to the patient.(GP5)

Despite the concerns of GPs that care home staff lacked healthcare skills, care home staff revealed a body of experientially derived health-related knowledge. Examples included nutrition, rehabilitation or the identification of new illnesses. So we've got him on the, we tried the hoist and he was okay and then, they had to stand him, and I said, ‘Could he stand?’ and they said ‘Yes.’ I said, ‘Right, don't use the hoist, get the rotunda out, two of you, and do him on that.’ So he's going to gain that little bit of strength, isn't he? (CHM3Res)

Tensions in the responsibility for the healthcare of residents

A recurring issue in both the nursing and dual-registered homes was the ambiguous nature of what care should be provided by care home nurses and what should be provided by NHS district nursing services. As a district nurse is a bit of an issue, because there are times when we have to go into a residential home to administer insulin when there are nurses there, trained nurses, and they will not administer the insulin because they're saying we're not insured, so that piles even more pressure, even more visits onto the district nurses. (DN1)

Some care homes recognised that they could provide more healthcare and that it would be beneficial to residents if they did so, but expressed a strong fear of being blamed for mistakes. At the back of your mind you always know that if there's a deterioration in somebody's condition, if there's a medical change, we would be neglectful if we just sat there and recognised that, and thought oh we'll get the doctors to see it next Tuesday. (CHM2dual)

Legislation and regulation sets out standards for care home managers. There was an understanding by managers that, as part of their responsibility for residents’ well-being, they would ultimately be held responsible for residents’ health as well as their social welfare. They therefore saw mediating access to healthcare as part of their role. Obviously, being a registered manager, you're legally responsible for an awful lot for, under the care homes regulations act, care standards act. (CHM1)

This perceived responsibility for healthcare decisions extended to end of life issues, which were universally considered to be difficult. Some care home managers described tackling the issue of do not attempt resuscitation (DNAR) orders directly with residents and families and having to take important decisions about advance care planning without support from healthcare professionals. Social services don't want the family to make that [do not resuscitate] decision. So I'm in the middle here, because if you don't do it means you're neglecting it, you're not good a nurse, you're not a good home, but the GP does not want to take responsibility for that. (CHM2)

There was a mismatch between care home managers’ expression of responsibilities bounded by duty of care and fear of regulation and NHS staff's frequent assertion that fear of litigation influenced how care homes undertook their work. Although they're writing ‘today Bill’, for example, ‘refused a bath, was too ill to get in the bath and just wanted hands and face washed’, documenting it but the care plan says Bill is able to make a, is able to have a bath or shower each day. So that would not stand up in a court of law if it had to. (ANP1)

GPs often reported not liking this work. One of their main concerns, attributed to poor staff skills and hence risk assessment was that some patients were referred to them for what they considered to be, trivial reasons. the leg's a bit red, or something like that, and you know you can see from looking at the notes that your colleague's been that week, said it might be a mild cellulitis, not too bad, probably give some antibiotics, but you know let's not worry too much about it, leg's not better come back and visit again. Hang on a minute you haven't given it long enough (GP4)

GPs also expressed concern regarding the value of medical intervention in many of the residents. A person who's in a home, it's the end of their life. They become ill, they get a chest infection, are we going to treat them? Are we going to bother? Do they want to go into hospital, be messed around, needles stuck in them, people messing them about? You know, isn't it better they just died? (GP1)

Despite their limited healthcare skills, care home staff are responsible for accessing healthcare and felt they have important contributions to make to healthcare decisions. However, inadequate working relationships with primary care staff prevented them from doing so. This was particularly evident in their role as advocate for the residents, most of whom they knew well and with whom they had close relationships—at times accepting a role comparable to kinship for those with no family. The particular contributions they described related to assessments of mental capacity for medical decisions and in establishing the best interests of residents. A lady…with advanced dementia, a succession of chest infections and asthmatic. GP wanted [this lady] to be admitted into hospital. The nurse didn't think it was in this lady's best interests…she was treated with IV antibiotics, she came out of hospital. She died eight days later. (TN2)