Personal resuscitation plans and end of life planning for children with disability and life-limiting/life-threatening conditions.

This article discusses the need for person-specific planning for the increasing numbers of disabled children with life-limiting and life-threatening conditions. It describes the system developed in Nottingham for this client group to have a family-held personal resuscitation plan, (PRP) which is developed with the child and family by their lead paediatrician. The PRP is an emergency medical care plan which supports the provision of the most appropriate level of intervention for the child whether they are at home, school, short break unit or hospital. The PRP template is presented with advice on implementation and case examples. Feedback from families, medical and nursing staff is that PRPs are useful and empowering. The system supports timely discussions about appropriate care in an emergency and the communication of decisionsmade jointly by the child, family and medical team to all concerned. A flexible and person-specific PRP stating what interventions to do such as airway clearance, facial oxygen, trial of bag and mask ventilation is preferable to a do not attempt resuscitation form which is an 'all or nothing system' and can seem very negative to families. A PRP in the home can support appropriate action from local rapid response teams set up to review unexpected child deaths.