『保健医療科学』 2021 第70巻 第5号 p.460-468（2021年12月）
特集：難病患者と家族の尊厳を保持した共生社会の探求 ＜解説＞
難病患者と家族等の地域生活を支える医療
―目線の先にある風景に即して―
小森哲夫
国立病院機構箱根病院神経筋・難病医療センター
Medical systems for supporting the lives of intractable disease patients and their families in the community: According to the view in front of their eyes
KOMORI Tetsuo
National Hakone Hospital
抄録
難病患者には疾患に対する治療や医療処置を専門的に受ける医療機関とのつながりが欠かせない.また，患者ではなく社会で生活する生活者としては，患者を支える家族等の関係者とともに地域社会での役割も持ち，地域からの支援ももらいながら難病と共生する人生を過ごす.そのために地域社会として難病患者と家族等を支える仕組みを整備していくことになる.筆者が神経内科医として難病と長年関わってきた経験や厚生労働省研究班の最近の研究成果などを整理した.地域支援の要は保健所と難病相談・支援センターであるため，その働きについて希望も含めて記載した.また，難病法で対応すべき小児発症難病，難病支援従事者の教育・研修の最近の動き，災害弱者となる難病患者への災害対策についても触れた.
キーワード：難病医療提供体制，保健師，難病相談・支援センター，教育・研修，災害対策
Abstract
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 authorʼs 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.
keywords: medical provision systems for intractable diseases, public health nurses, consultation and support centers, training, disaster preparedness
