Third sector and the shaping of services for Huntington’s disease in Scotland: organisations, boundary work and expertise
Seymour, Tirion Julia
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Social science research on third sector organisations in the last two decades has emphasised their growing presence and importance in healthcare. This has occurred alongside significant reorganisation of health systems in the UK, including a continued policy emphasis on partnership-working between the public sector and the third sector. However, unanswered questions in the literature remain with regard to the specific roles that these organisations fulfil within partnership arrangements. This thesis examines the role of third sector organisations within Scottish services for the chronic, neurodegenerative condition Huntington’s disease (HD). The closely connected nature of Scottish healthcare and the multitude of professionals involved in HD mean these services are an important, but currently understudied, example of professional interaction around complexity. A multi-methods qualitative research framework was used to gather perspectives of key individuals working in the Scottish HD and wider health scene. Making use of the key concepts of expertise and boundary work, this thesis argues that third sector organisations have an extensive shaping role in 1) the positioning of healthcare organisations, 2) the identities of healthcare professionals, and 3) the meanings around illness and the remit of support. The research findings revealed that organisations and professionals in HD partnership arrangements engaged in processes of boundary work in the negotiation of the roles of themselves and others. Third sector professionals occupied many positions within services, as both experts and supporters of patients. In the process they and other professionals often took on identities as ‘key, committed professionals’. Understanding around HD was also shaped by these professionals as the wider aspects of illness and its support were brought into focus. Building on these findings, it is argued that third sector professionals in coordination roles are well placed to develop a type of expertise that I term ‘aggregate know-how’ (Pols 2014), based around both their professional skills and their extensive contact with patient experiential knowledge. The research builds on and extends influential previous models of third sector ‘partnership’ in healthcare (Rabeharisoa 2003), emphasising the key role of third sector organisations in knowledge production. It also offers insights of both theoretical and practical use with regard to service delivery in healthcare, showing the potential for genuine third sector/public sector partnership around expertise when there is adequate cultural support and resources.