Sixteen plus: young people with declining capacity due to progressive illness: a critique based on governmentality

This study aims to add to the governmentality-based critique of health and social care and bring to bear such analysis to the specific context of those who are sixteen and above and have declining capacity due to progressive illness. The thesis is concerned with aspects of Foucault's work in regards to disciplinary and biopower. It adopts Michel Foucault's term 'governmentality' for analysis of the state's ability to manage its resources economically and efficiently, in a way that allows for regulation and the need to negotiate through a process of self-governing. Through problematising England's health and social care system, the thesis examines the governance of families via policy and legal framework centred on the Mental Capacity Act 2005, the Care Act 2014, and the Children and Families Act 2014. It suggests that the care and support assessment processes control individuals, the workforce, and the population. The study observed how ageing is a problem at a global, national, and local level and examined England's present economic, political, and legal responses. The programme of enquiry examined whether or not the rights and interests of people with advanced or progressive illness under these Acts are interpreted and followed as parliament intended. This study observed individuals, family and friend carers as they engaged and experienced the formal assessment processes - bringing to the forefront the ways of obtaining new knowledge into everyday contemporary life. The empirical study has made visible, comments within the carers' perspective and experiences. The impact of the conversational practices illustrate what Foucault termed the relationship of power and the possibility of resistance within the power/knowledge nexus. The carers' responses highlighted underlying tensions to the health and care system, and specifically the impact of being an unpaid carer. Furthermore, only one of the five had received their carers' assessments as part of the whole family approach. This suggests that the wellbeing of family and friend carers remains expendable in today's contemporary society. However, the 2020 coronavirus pandemic has impacted on this study. During the pandemic, we observe the rapid shift in legislation (whether temporary or permanent), which indicates how forms of institutional power are based on the ability to maintain and change over periods of time, and are not necessarily based on specific laws and legislation in a fixed time. This thesis, therefore, contributes to understanding the specific issue of health and social care governance of those 16 and over with declining capacity due to progressive illness, and the field of governance of health and social care. It combines these two aspects in the context of Foucault’s work