2021 Volume 70 Issue 5 Pages 460-468
Relationships with the healthcare agencies that offer medical treatments are vital for intractable disease patients. As they are not only patients, but also members of the community, they have roles their communities and live their lives with an intractable disease, receiving support from their community and partners such as their families. Therefore, it is necessary to create and maintain support systems in the community for these patients and their families.
This paper describes the author’s long-term experiences as a neurologist and the latest research findings of the Health, Labor and Welfare science research. The expectations placed on public health centers and consultation and support centers are also mentioned, as they form the core of support in the community. In addition, chronic diseases in childhood are also described, as they should be covered by the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases. Finally, recent trends in training for supporter personnel for intractable disease patients, as well as disaster preparedness for intractable disease patients are presented.
