No abstract

Introduction Over the last decade the number of children with life-limiting conditions surviving into adulthood has increased dramatically and is likely to continue to increase. Engaging the Adult Specialist Palliative Care (SPC) services in the care of these young adults (YA) is essential. The YA concerned commonly have complex needs, rare conditions and a mixture of cognitive and physical disabilities. For many adult SPC teams this is new territory, and there are many potential barriers to care. Provision of SPC services for these YA needs to be appropriate, available and equitable- and in practice this is often a challenge. With this in mind, we endeavoured to identify and explore the barriers to care. Methodology We conducted a telephone survey using a semistructured questionnaire. All adult SPC in-patient units in Wales were invited to participate. The Clinical Lead was interviewed and we explored their experiences, views and concerns regarding proving a service to these YA. Results 13/14 units participated. Five of the units had had experience in caring for YA with complex needs but none had looked after more than 2. There was enthusiasm for providing service to YA but this was tempered by some important concerns. Including Education/training of staff, adequate staffing levels and funding. There were several practical issues including management of non-invasive ventilation and ventricular-peritoneal shunts that reduced general confidence. Interestingly, there was a shift in attitudes over the course of the interview, resulting in 12 of the units feeling confident to admit the hypothetical patients (with Cerebral Palsy and Duchenne Muscular Dystrophy). Conclusion The attitudes among the adult SPC units towards the care of YA with complex needs are generally positive. There are, however, specific issues and concerns that need to be addressed in order to safely progress in developing an appropriate service for this patient group.

No abstract

BackgroundControlling seizures in children approaching death is often challenging. The evidence base to guide best practice is limited. We compared current practice in our region against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM), seeking to identify any difficulties, barriers, and areas for improvement in symptom control.MethodsRetrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a ten year period (2006–2015).ResultsWe identified and reviewed eighteen cases. Six (33%) had a malignancy, eight (44%) had a progressive neurodegenerative condition, and four (22%) had a static neurological condition with associated epilepsy. Fifteen (83%) had seizures during their final admission/care episode, and the remaining three had had status epilepticus previously and were felt to be at high risk of recurrence. Thirteen (72%) died in their local hospice, four (22%) at home, and one (6%) in hospital. Seventeen (94%) involved the use of subcutaneous or intravenous midazolam infusion, for a mean of eleven days (range 3–27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of APPM dose recommendations. Six individuals (33%) received subcutaneous phenobarbital infusions, with four of these (67%) receiving final doses in excess of APPM dose recommendations. Plans for adjustments of infusion rates, maximal doses, or alternative approaches should treatment fail, were inconsistent. In 17/18 (94%) cases seizures were successfully controlled in the days or hours before the child died, but this was sometimes a prolonged process. Fear of apnoea or over-sedation were the main barriers to prompt symptom control. Staff found the experience of managing seizures at end-of-life challenging and stressful.ConclusionsPharmacological approaches to seizure management in end-of-life care are variable, often exceeding dose recommendations. Despite this, safe and effective seizure control was reported to be possible in all settings. Best-practice management guidance should be developed to support improved care and to increase staff confidence in this area.Project funded by Health Education England

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.