OP15
MOVING ON Free

INTRODUCTION: Moving from the “safety blanket” of hospital described by parents to the return home and the attempt to re- build family life is a difficult journey. As more children are surviving brain cancer, staff are challenged with finding ways to support this transition. The Neuro-Oncology Survivorship Project (NOSP) was established to identify specific needs and solutions for children, young people and their families. METHOD: 18 interviews were conducted with parents or young people from 1 to 14 years post diagnosis, highlighting the impact living with a brain tumour has on family life. It identified common themes and areas that were most difficult for them. RESULTS: This evidence and learning from the NCSI pilots identified improvement initiatives achievable within the limited budget and time frame. Many parents struggled to retain information on support services during their child's acute illness so a Family Support Directory and Awareness Day training course was implemented to address this. Additionally, a “The Way Forward” course is planned to help young people learn coping strategies. Also new partnerships with local Headway services have identified learning and support for those over 18. Our new Brain Tumour Local Sport and Activity Folders enables families to access rehabilitation opportunities in local communities. CONCLUSION: Capturing experiences of families has exposed gaps in support extending beyond traditional healthcare services. New initiatives provide families with more training and information whilst the appointment of 2 Late Effect Nurses will drive survivorship support even further.