From the patient perspective differences in case management approach were discernible and their observations reflected the priorities and foci of the nurses (see also chapter 5)
Patients of the community matrons emphasised how much time the nurses gave them, their willingness to listen and the services they secured and that they were able to do more for them on their behalf. The community matrons were identified as very significant people in the lives of their patients. The patients of the clinical nurse specialists and the district nurse case managers also appreciated regular contact and continuity but were more likely to emphasise the technical and enabling work that the nurses achieved on their behalf, helping them to manage their disease or symptoms.
It is difficult to comment on the patient experience of the nurse practitioner and the care home support team, because there were fewer patients and
considerably less contact when compared to the other models. Older people in the care home could identify that the nurse case manager had organised extra services for them (e.g. physiotherapy) and were appreciative, but they did not appear to recognise that their care was being reviewed or monitored by her. One of the nurse practitioner’s patients was clear that the nurse practitioner was not working as a case manager and was not following up referrals or monitoring the patient’s health.
There was overlap in how the patients and carers of the three main groups of nurse case managers (district nurses, community matrons and clinical nurse specialists) described the valued of the case manager role. These attributes
(expert, support and resource and intermediary) were described as key characteristics of the nurses working as case managers regardless of model.
8.8 Discussion
The patient narratives and experience of health over the nine months of data collection forcefully demonstrated how, as well as the major exacerbations of their disease (and were demonstrated in the findings of chapter 6). In addition to this patients were dealing with bereavement, loss of function and independence and anxieties about their ability to cope in the future. They were appreciative of the physical and disease management benefits of case management but, as important, were psychological support and regular contact. The nurses’
involvement made their life easier and the feeling of confidence that having a nurse case manager brought was seen as enabling. From a patient perspective the quality of the relationship (as opposed to the quantity of contact and specific tasks achieved on their behalf) was the defining feature of good case
management. This relationship was robust when the patient had confidence in the nurse’s expertise, was supported in times of crisis and the nurses’
interventions mirrored their concerns and priorities.
There are many representations of old age and living with chronic disease that range from this being an experience of inevitable decline and deficit to one that promotes a very positive experience of patient empowerment and healthy ageing as avoiding or escaping this. Neither of these theories fits with the experience of community dwelling older people or their narratives of how they engage with the challenges of fluctuating health, social isolation and increased vulnerability to adverse circumstances (Reed et al 2003, De Lepeliere et al 2009). A nurse case manager, who listened, was responsive and who worked on the patient and their carer’s behalf, defined quality care.. Community matrons appeared to be able to give the most time and resources to achieve these relationships, however, patients of nurses working to more loosely configured models of case
management identified similar indicators of effectiveness. When the nurse case management was disaggregated into oversight with nursing tasks delegated to others, the patients were more negative about the quality of their care.
The importance of continuity and relationship in primary care has been
extensively discussed often in the context of the relationship between the GP and the patient (Freeman et al 2003, Haggerty et al 2003) Case management models offer continuity, from a provider perspective this relates to efficiency and
effectiveness of service provision. From the patients’ perspective however this was expressed in terms of the relationship and support they received from the nurse over time being a notion of continuity that is based on patient
centeredness (Guilliford et al 2006). More recently, research on how patients with long term conditions understand continuity, has suggested that patients value longitudinal continuity and relational continuity because they facilitate the establishment of a “shared personal and clinical history between two individuals”
(Cowie et al 2009:83). This is what the patients identified as an important component and benefit of having a nurse case manager.
These findings echo those of Sargent et al (2007) who interviewed patients newly admitted to a very structured and high profile nurse case management
model (Evercare) or the caseloads of recently introduced community matrons.
They identified five categories of support that the patients identified: clinical care, care co-ordination, education, advocacy and psychosocial support. All of these are components of the three areas of care; clinical expert, source of support and resource and intermediary identified in our study. In Sargent et al’s (2007) research, the nurse case manager was seen as a unique source of education and advice, helping patients to manage their condition more effectively. Whilst advice and education were recognised as important nursing contributions there was less evidence from the patients in our study that they had achieved greater independence or self-efficacy because of nurses’
educational input. The patients in our study reported smaller, more incremental, changes in how they lived with and managed their long-term conditions. The educational benefits had helped them to manage their anxiety and to use strategies to ameliorate symptoms or recognise when these were becoming worse. These benefits were inextricably linked to the level of support and confidence patients had in the nurse’s expertise.
Sheaff et al (2009), drawing on the findings from the same Evercase study, observed that case management supported patients' independence by enabling them to continue to live in their own homes but simultaneously increased the patient and carers’ practical and psychological dependence on their case manager. These findings reflect our own when comparing a wider (and more loosely defined) range of case management approaches. For this study it raises the question as to whether what was being documented was case management or something else. For the majority of patients, nurses were compensating for the perceived shortcomings of other practitioners, most notably GPs, and creating links between individual services that did not cater for the range and complexity of patients’ needs. Even with regular nursing involvement data collection over the nine months showed these patients would continue to experience exacerbations, falls, infections, and changes in their systems of support (see chapter 6). Nursing involvement was crucial addressing the uncertainty of the patient’s situation. One that was not going to improve but could be stabilised, ameliorated, or ultimately palliated. This challenges the assumption that patients with multiple needs, once specific issues have been addressed, can be referred on for technical review or less specialist input.
8.9 Conclusion
There were more similarities than differences in how the patients and their carers described the impact and value of the different nurse case management models.
It was striking that patients and carers were able to draw on their experience of health and social care to compare services and articulate how nurse case management was preferable to other nursing or primary health care services.
This comparative analysis meant they knew (but not necessarily how) that the nurse case managers were improving their access to and use of services and the overall quality and continuity of care were preferable to what they had previously received. The narratives suggested that the nursing contribution across the models was mainly substitution and supplementary, filling in the gaps and deficits of existing provision. The nurse case manager was identified as providing care that was complementary to other services when she was drawing on