Measures to build an inclusive society through the council of intractable diseases, based on care for each client

Abstract

PHNs are required to connect their intractable disease clients and their families with healthcare, welfare, and other informal resources, in order to ensure that they are not excluded from their communities. In addition, PHNs should enhance the self-care and mutual care of people, by utilizing the social capital in the communities.

Since the enactment of the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases in 2014, consultations regarding measures for intractable diseases have been undertaken with the council of intractable diseases in Town A. During consultations with the council, PHNs helped the members discuss two cases in which QOL had been improved: the provision of respite care in hospitals, and the disaster preparedness program. These consultations not only helped to enhance measures for intractable diseases, but also aided in creation of an inclusive society. We should continue our mission, and work to improve the care system for intractable diseases via utilization of the council.