Abstract

Abstract Children with palliative care needs are increasing in prevalence and complexity of need. 49,000 children (under 19 years) were estimated to be living in the UK in 2012 with a life limiting/life threatening condition that might require palliative care. Palliative care requires a total and active approach, with transparent, communicated, agreed provision of appropriate and proportionate care. Planning improves care, supported by documentation of plans. Advance planning enables management of both reversible and chronic aspects of the condition, as well as utilising parallel planning when end of life approaches. Challenges in palliative care include the commissioning of sustainable services across organisations to deliver, often over years, but sometimes briefly and rapidly, 24/7 access to skilled palliative care, including hands on care at the end of life. Care is integrally intertwined with other clinical, social, education and voluntary services to ensure that families receive the spectrum of care required throughout their journey.

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