Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces

This chapter critically evaluates how participation, accountability, non-discrimination and equality, empowerment, and legality (PANEL) principles can work to uphold the rights of disabled people as they learn about their impairment, and specifically addresses the lived experience of having Motor Neurone Disease and communication impairments following stroke. The PANEL principles can help healthcare providers to deliver a human rights-based approach by ensuring that Participation, Accountability, Non-Discrimination, Empowerment, and Laws are utilised. Drawing on normative concepts of citizenship and being a ‘good’ patient, the chapter will explore how disabled people fall through the cracks. Including disabled people alongside professionals as equal holders of power in decision making is vital. Human rights cannot be achieved through public policy alone. Instead, rights must be embedded in the process of change, to reach private spaces. This chapter will analyse qualitative data to evidence barriers to human rights realisation and will argue that medical practitioners and institutions must be more responsive to uphold rights.