Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Laidlaw S; Wylie F; O'Connor J; Rahman F

BMJ Supportive and Palliative Care

2022

Hospice Care; Adult; Child; clinical article; conference abstract; controlled study; conversation; Female; Hospice; Human; human experiment; Male; Pediatric; psychological well-being; Scotland; social care; trust; Wales; wellbeing; young adult

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for all aspects of care. Many young adults and their families feel that there is nothing for them on leaving paediatric services and that they teeter on a 'cliff edge' with no hope for the future. Without a robust process of transition, the young adults' physical and mental wellbeing may be negatively impacted upon and yet the transition of young adults with complex conditions is not currently a health and social care priority. A pathway Identifying that there was a need to prioritise transition, Children's Hospices Across Scotland (CHAS) and The Prince & Princess of Wales Hospice (PPWH) worked collaboratively to pilot a Transition Pathway. This involved the development of a categorisation template for the transition caseload with subsequent identification of 12 young adults aged between 19 and 20, all of whom have a non-malignant diagnosis. Over an 18-month period, 4 young adults have fully moved to the adult hospice, 4 continue to remain on both caseloads, 3 have been discharged directly from CHAS with no adult hospice input, and 1 has died. Conclusions Focus groups for the young adults/families to share their experience of the pilot are planned to enable a full evaluation. However, ahead of these conversations it is recognised that collaborative working is essential to ensure a robust joint approach to transition, supported by: information sharing regarding the differences in services offered (and thereby demystifying what an adult hospice is); open conversation to develop a foundation of trust between the young adult/families and the health care professionals; and the development of an individualised 'at their pace' transition plan to support the health and wellbeing of the young adult and their families moving forward.

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March List 2023