6304 Exploring environmental and economic impacts of complex disabilities: a case study of rett syndrome

Objectives This project aimed to gain insights into a complex paediatric neurological condition, Rett Syndrome, exploring its impacts on patients and families. Specific objectives included understanding the climate cost of complex care as well as economic impacts and extracting learning points from an in-depth case study. Methods Conducted during a Special Study Module, the study focused on a Rett Syndrome patient seen at the Anavex Trial Clinic. Data collection encompassed appointments, education, equipment, and family life through interviews and observations. Economic and environmental impacts were assessed, particularly related to equipment use, travel for appointments and educational support. Results The case study revealed the significant economic and environmental implications of complex neurodisability. Single-use equipment, extensive appointments with various healthcare teams and transportation challenges were highlighted as key effects on both categories, in particular the environment. Conclusion Understanding the family background, reducing single-use equipment, promoting team cohesion efficiency and public transport all emerged as crucial to lower the carbon footprint of complex care. Marital status also impacts economic outcomes and therefore consultations should explore family support needs. Other recommendations included promoting reusable alternatives for single-use equipment, enhancing collaboration between (and streamlining) care teams to minimize economic and time impacts and encouraging the use of public transport for appointments. From this study, the patient and family were interested in the findings and were strong advocates to see changes to improve such impacts.