Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service. We expand on the recent understanding of ‘Total Pain’; applying a holistic approach to pain assessment and management in children with severe neurological impairment.

BackgroundWith the increasing survival of children with life-limiting conditions, support through teenage years and into adult services is of vital importance to children and families. The All Wales Paediatric Palliative Care Team has identified the need to implement a robust transition service.AimsUndertake a two stage service evaluation of transition support in South Wales:1) An audit of current provision against national transition guidance from NICE (2016) and Together for Short Lives (2015)2) A qualitative assessment of the transition process by staff and families.MethodA retrospective notes audit was completed using hospice and hospital records. Care provided for 20 patients of transition age (14–17 years), and 10 patients post transition (18+) was assessed. Semi-structured interviews were conducted with eight families and 17 staff working with transition patients in a variety of roles.ResultsFor 25% of families, transition was the main concern they had when considering their child’s future. During transition planning, all families had their ethical and cultural needs considered, with family wishes/aspirations for adulthood recorded in 63% of cases. 13% had documented goals for transition. There was no documented support for developing identity/sexuality/relationships, or spiritual development. By transition age, 37% had their needs met by an appropriate adult service. Two-thirds of families felt well supported during their transition. 67% felt poorly informed regarding adult services, despite 80% having met a member of adult palliative care team. No patients had a formal transition plan. 50% of staff felt support for transition was inadequate, with 70% expressing the need for improved continuity in the service.ConclusionA clear transition process is required to ensure early planning, that needs are met by adult services, and that family goals drive the transition process. Issues of identity, sexuality and spiritual development require specific focus. Funding, training and improved key working need to be addressed. A multidisciplinary approach with improved access to adult respite services is vital.

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