2015年6月23日(火)に第2回、その1週間後の6月30日(火)に第3回の研修会がありました。
第2回では、難病の療養相談について「相談の受け方」の講習がありました。
はじめて病気(難病)を告知された時のショックと不安(なんで私が!?、これからどうしよう…..)から始まり、しだいに病気を受け入れていく過程があり、時間とともに病気の自分に慣れて、やがて親しみ(いとおしさ)を覚える時期がくると言われているのだそうです。(私もそうでした)
成人の場合には、病気に対する不安と苦痛はもちろんですが、仕事を続けられるかどうか、またそれに伴う経済的不安もとても大きくのしかかってきます。
ピア・サポーターは、相談者の話を丁寧に積極的に聴き(「傾聴」)、相談者はピア(仲間:ここでは難病と診断されたことのある人)と話すことにより、自分の気持ちを整理して、自分の力で問題に気づき、問題の解決能力を高めることができるのだそうです。そして、必要であれば次の相談機関に連絡をします。
この他にも、相談を受ける時の心構えなど、いろいろな研修をしました。
第3回では、オブザーバーとして、保健所の保健師さん2名と難病患者を受け入れてくれる県内でも数少ない施設の職員の方数名が参加して、難病に関する基礎知識の講義とALS(筋萎縮性側索硬化症)の患者さんの療養生活を記録したドキュメンタリーのDVDを見ました。
折しも、国指定の難病は、7月1日から、今まで110種であったものが、306種に増えました。配布された指定難病(医療費助成対象疾病)一覧には、306の病名がぎっしりと並んでいますが、残念ながらLCHは入っていません。LCH患者会は、第一に患者さんとその家族の相談窓口になることを基本理念としていますが、患者会として社会におけるLCHの認知度を高める努力が必要であると痛感しました。
2回目の研修会から、新メンバーが1名加わり、病名は7種になりました。
一番遠い人は、片道2時間30分かけて、ゆっくり慎重に車を運転して来ます。会場のカンファレンスルームには、キャスター付きソファベッドが2台設置され、そこで休みながら研修を受ける人もいます。皆さんとても熱心で、終了時間が過ぎても話がはずみ、最後は「部屋をしめますよー。」と言われて解散したりします。
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