The document discusses improving communication and the family experience for children requiring long-term ventilation via tracheostomy. It describes using Experience Based Co-Design (EBCD), an adapted approach involving semi-structured interviews and feedback sessions with families and professionals, to identify areas for improvement. Key changes implemented based on this include improved communication materials, dedicated family key workers, expanded multi-disciplinary team meetings, and increased non-medical support. The approach showed that involving users in evaluating services requires adaptability and technology can allow all voices to be heard to continuously improve care.