During the course of the research, there were two key issues that interviewees discussed in relation to development and maintenance of integration arrangements: the priority given to cost-containment and current and future restructuring.
All four case sites were experiencing restructuring of some sort during the period of the research and this dominated discussions with staff. These changes were based at an organisational level and, as outlined in Chapter 3, also at the NRT level. Two of the teams experienced significant restructuring during the period of the research. In site A, condition-specific community neurology teams merged with the wider
community neurology service. Teams, therefore, had to spend time adapting to their new working arrangements,finding their place in the service and dealing with different client groups. In addition to their usual clinical and administrative work, therefore, there was little time available or inclination for staff to try new ways of working.
Even where there were not specific team changes, some wider structural changes affected front-line services, and where this had not occurred, staff expressed concern or predicted that this would happen in the future. There was a feeling that constant restructuring made it increasingly difficult to work in an integrated way and for staff to be clear about how their service wouldfit into the new service landscapes. These factors, linked with‘austerity’measures, created job, role and team insecurity and inhibited
front-line staff from continuing to develop services.
Front-line staff commented that working in an integrated way was becoming increasingly difficult. For example, staff in one team described how cuts to social care and voluntary sector budgets, in particular, had led to questions over availability and/or capacity of services in social care, which meant that service users might no longer be able to access some services or might have a very long wait. A senior social care manager explained that long-term input around joint commissioning was difficult because so many commissioners‘had been lost’from the PCT.
The foundations for moving towards CCGs47were also being laid during the time this research was
undertaken. Staff were concerned about the future of neurology services. This was, in part, because of the potential loss of neurological commissioning expertise. Existing commissioners were being made redundant and the commissioners who remained had to take on additional roles and responsibilities. In two of the case sites, practice-based commissioning was well established (sites C and D) but this did not alleviate concerns about new commissioning structures.
Interviewees were concerned about GPs’limited interest in, and knowledge about, neurological conditions and their limited awareness about the range of providers that were part of the emerging economy of care. Given that lack of awareness of LTNCs and available services was identified as inhibiting integration, interviewees were concerned that this might impact negatively on service provision in the future. With a handover of responsibility for commissioning services, including neurology services, to GPs, practitioners and commissioners alike expressed concern that this might affect cross-boundary working, service availability and service quality.
Commissioners and practitioners felt vulnerable in relation to their jobs, their roles and the specialist neurology services they provided. Coupled with the organisationalflux and a general feeling of unrest about changes to public services, resulting directly from restructuring and cost-containment policies, innovation to promote integration was inhibited and, in many people’s experiences, integrated arrangements for service provision had been fractured.
Summary
This chapter has reportedfindings from interviews with organisational, NRT and carer interviews and has provided an overview of the factors that they suggest affect integrated commissioning and service provision.
Integration was viewed positively, being seen as a key priority by strategic staff dealing with organisational integration and by practitioners dealing with care co-ordination issues with and for their clients. However, there was a feeling across all case sites, including those with integrated services and commissioning arrangements, that integration was not widespread enough. Barriers and facilitators to achieving integration could be at the person, service and structural levels but these factors were not mutually exclusive. Indeed, integration at a practice level, which was often instigated and maintained by
practitioners, was facilitated by robust organisational structures supporting integration or by structures that promoted bottom-up innovation.
EXPLORING THE MECHANISMS FOR INTEGRATION IN THE CASE SITES
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This research was undertaken at a time when service commissioners and providers had overseen structural changes and were faced with more major structural andfinancial change. Unsurprisingly, this dominated discussions at all levels of staff interviews. In general, commissioners and service managers seemed to have greater awareness of the developments, and what this might mean to staff and services, than did
front-line staff. While front-line staff were aware of changes, several stated that they were unsure what impact the changes would have. This meant that staff at all levels were concerned about their jobs, their roles and the future of services that were provided to people with LTNCs. This insecurity, we suggest, made innovation towards increased and continued integration around LTNCs particularly difficult for practitioners, service managers and commissioners alike.
Chapter 5
What outcomes do people with
long-term neurological conditions want from
integrated health and social care?
Key messages
l Outcomes described in earlier research in the SPRU were broadly relevant to people with LTNCs, but needed revision and additions.
l Outcomes could be grouped into lower, intermediate and higher-level outcomes.
l Outcomes were inter-related, both within and across levels.
Introduction
The research question‘What outcomes do people with long-term conditions want from integrated health and social care?’can be interpreted in two ways. First, it could be about the outcomes that can be achieved by services that are integrated. Second, it could be about the outcomes that people with long-term conditions want and how these might be achieved through health and social care integration. Building on the evidence presented inChapters 1,3and4, and the social model of disability, we chose the second interpretation, so that the outcomes we identified were those that were important to those using integrated services.
As noted inChapter 1, previous research largely uses clinical and functional outcome measurement to assess the impact of services and of integration.19–22These outcomes may not be appropriate for people
with long-term, complex conditions, as they do not easily account for the potential deterioration that can be associated with these conditions. Outcomes that go beyond the clinical and functioning aspects of health are likely to be equally, or more, important to people with LTNCs. As such, we adopted a wider approach to identifying and understanding the outcomes important to people with LTNCs. This chapter presents the results of using this wider approach to establish the important outcomes for people with LTNCs.
Our conceptualisation of outcomes intended to build on that put forward by earlier research completed at the SPRU under the Outcomes Research Programme, which focused on the identification of outcomes desired by users themselves.2,91The framework for understanding outcomes derived from this earlier
work comprised:
l Maintenance outcomes–for example, maintaining acceptable levels of personal comfort, social contact.
l Change outcomes–for example, improving confidence, improving accessibility of the environment and ability to get about, reducing risk of harm, regaining self-care skills.
l Process outcomes–the results of the way in which services are provided, for example whether people feel valued and respected, whether they feel they have a say over service provision, the‘fit’of the service with family and/or culture.
This framework was developed in the context of social care services for older people and those with disabilities. Harriset al.3then rede
fined the outcomes for younger adults with disabilities, based on the social model of disability, and gave a stronger focus to education, training and employment issues. They listed four main groups of outcomes for young adults with disabilities as shown inFigure 6.
The current research applied this earlier thinking and conceptualisation to explore the sorts of outcomes people with LTNCs might want from integrated health and social care that could be used as an exemplar for long-term conditions generally.
Basing our understanding on the views of people with LTNCs, we aimed to clarify the parameters of each of these outcomes and assess whether or not these domains and outcomes were relevant for people with LTNCs. As outlined inChapter 2, we carried out in-depth interviews, based around these outcomes, with 35 people with LTNCs.