P151 Assessing the impact of a family day for young people and their families living with juvenile dermatomyositis in the Northwest of England

Abstract Background/Aims JDM is a rare, autoimmune disease affecting primarily the muscles and skin. There are approximately 2-4 cases per million children and young people. JDM can have a huge impact on the lives of the young people, their siblings and families and many young people and families have never met others with the condition. Aims: To organise the first family day for young people and families living with JDM in the Northwest of England, and to assess the impact of the day. For Young people and their families to feel less isolated living with JDM; for young people and siblings to get to take part in an activity to build their confidence; for young people and their families to receive information about JDM and living with the condition. Methods Invitations were sent out to young people and families with JDM who attended Alder hey Children’s Hospital, Manchester Royal Children’s Hospital, Sheffield Children’s Hospital and Leeds Children’s Hospital. The family day was organised outside of a hospital setting at the Chill Factor in Manchester. The young people were invited to enjoy snow activities, a science workshop, arts and crafts and soft play, as well as enjoy a fabulous lunch! A programme of speakers was organised and included a specialist nurse from GOSH discussing her current JDM research; a Manchester patient talked about the lived experience of having JDM and entering adulthood. A question and answer session was organised for young people and families to ask questions to a multi-professional panel. Results Feedback from questionnaires filled out on the day and email responses suggest the young people and families found the day beneficial and benefited from meeting up with other families and sharing experiences. The feedback suggested they found the education sessions and tips gained helpful and would aid management of the condition. Feedback suggested that the young people and their siblings had fun! Meeting other young people with the same condition was frequently mentioned in the feedback as very beneficial and helped to reduce feelings of isolation. Feedback suggests that the majority of young people and families would like to keep in touch with other JDM families. Conclusion The feedback received from the families and young people suggested that the aims of the day were met and there was considerable interest in further such events in the Northwest and/or keeping in touch with other families living with JDM. Disclosure V.J. Cuthbert: None.