ACT and ACH amalgamated into a single charity ‘Together for Short Lives’ in 2011. The purpose of this paper is to describe the development, implementation and evaluation of the innovative child and parent-held My Choices resources to facilitate thinking and engagement in the future care planning process. Children’s palliative care planning and policy

context Families with children with life-limiting conditions and complex disabilities require early and ongoing support with their child’s health and social care from diagnosis onwards, and help to minimise Inhibitors,research,lifescience,medical the wider impacts on the family. In a children’s context – this type of support is called ‘palliative care’, and some children need this ongoing care over decades [7,8]. Inhibitors,research,lifescience,medical In this context ‘children’ refers to children and young people from birth to under 19 years. The Ku-0059436 research buy groups of conditions identified as possibly leading to palliative care of children and young people, are as follows [8]: 1. Life-limiting conditions where cure is possible but can fail (e.g., Inhibitors,research,lifescience,medical cancer); 2. Conditions which, though treated intensively over a period of time, inevitably lead to early death (e.g., cystic fibrosis);

3. Progressive conditions where treatment is palliative and often over many years (e.g., muscular dystrophy); and 4. Irreversible but non-progressive conditions giving rise to severe disability and sometimes premature death (e.g., disabilities following brain or spinal Inhibitors,research,lifescience,medical cord insult). Along with other high income countries, the Department of Health (England) and Welsh Government have made children’s palliative care and support to families a priority [9,10].

Recent reviews, policies and service frameworks have been designed to overcome Inhibitors,research,lifescience,medical problems in the continuity and coordination of children’s complex, palliative and continuing care [11-18]. There has also been an emphasis in higher income countries on developing children’s palliative care clinical networks and an integrated system of palliative care to optimize service delivery and organisation [19-21]. Guidelines and palliative care pathways signpost the need for healthcare professionals to share information Florfenicol at key time points and to involve children in decision-making [19]. The few currently available children’s care planning tools are primarily used by healthcare professionals and focus on decision-making towards or at the end-of-life [4]. Published literature is not clear about the decision-making processes and preferred care choices of children with palliative care needs and their families before the end-of-life care phase [6,22]. A recent review by Doug et al.