How Do Peer Networks Enable Service Users and Informal Carers to Obtain and Manage Personal Budgets?
Background: Since 1997, a growing proportion of United Kingdom citizens have been able to obtain a personal budget (PB) and spend it on their own support instead of using state-run health and social care services. Early studies of PBs found schemes that involved disabled people’s organisations and other peer networks (PNs) had significant advantages. However, the rapid increase in the use of PBs led to support being commissioned from a much wider range of organisations, and such schemes dwindled to a small proportion. Literature review: A systematic search of research databases and cascade search supplemented by expert suggestions identified forty-five relevant research reports published between 1997 and 2016. Data were aggregated and then subjected to a thematic analysis. The scheme developed to aggregate data shows that the supports provided by PNs could be grouped according to the different stages of obtaining and managing a PB. The approaches PNs used included fostering collaboration between individual PB users and between local agencies, enhancing communication with PB users, increasing people’s confidence about managing a PB, and applying specialist knowledge typically derived from lived experience. Focus group study: Applying the principles of emergent design within a critical constructionist framework, a secondary focus group study was developed. Three groups with a total of sixteen participants were held in the autumn of 2015, using a topic guide drawn from the literature review. Thematic analysis was again used to interpret the data. Results: While the collective approaches of PNs remain characteristic, there is considerable variation in practice between individual PNs. The support they provide can be characterised by two principal roles. Firstly, people are supported practically and emotionally to develop the skills necessary to manage PBs. Secondly, PNs mediate between the individual personal budget user and the agency funding the PB. To achieve this, they must manage competing tensions in their relationships with members and external bodies. Practice theory development and modelling: Bourdieu’s practice theory is applied and extended to model the relationship between peer identity, organisational culture and the support provided by peer networks. Peer support is conceptualised in terms of social capital. The characteristic approaches evolved by PNs are interpreted as cultural capital, often developed as cultural artefacts. The educational and emotional dimensions of peer support are interpreted respectively in terms of shared social practice and emotional capital. The empowering effect of PBs can be thought of as moving economic capital from the social field of health and care systems to that of the PN, where the field rules are more closely aligned with the life goals of PB users. PNs’ success in mediating between PB users and statutory bodies is dependent on social capital, which itself is derived from economic capital invested by both statutory bodies and network members. The impact of progressive cuts to the funding of PNs and the sums allocated to individual PB users has depleted the cultural capital within PNs and the wider social field of health and care systems. Conclusions: The theoretical approach can be seen in the context of a revival of interest in Bourdieu. It provides an alternative to naïve market models to account for the emancipatory potential of personal budgets, and supplements activist models for the effectiveness of user-led organisations. Reversing a recent policy of disinvestment in PNs would allow them to play a positive role in the implementation of personalised care in the English NHS and the continuing transformation of adult social care services, and many of the approaches they have developed could be learned and applied successfully by others working in health and social care services.
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