ABSTRACT
Association for Children’s Palliative Care produced a Family Companion to its Care Pathway in May 2009 and this is a really useful resource to guide parents through the maze of services and to help them to plan in advance for their child's care including the End-of-Life phase. Jamie continued in his own inimitable way: his general health improved in that having grown out of childhood illnesses meant that he was less prone to endless admissions in the community increased then our reliance on the acute services lessened. For many parents of children in the palliative care categories 3 and 4 it is the prospect of having a disabled child that is the very first hurdle that has to be overcome before the prospect of a limited life span is broached or even considered. When Jamie was about eight years old people had a pivotal meeting with the neurologist who cared for him, to discuss future plans.
