Background The paediatric palliative population differs from the adult population as the majority of individuals suffer from non-malignant conditions that can span years. Families experience an MDT approach that embeds GIRFEC principles and includes respite, education, health and social care working in collaboration. With advances in disease-directed management, many of these children are now living into adulthood and have to transition out of paediatric services. For young adults (YA) with complex, multi system conditions, services that can provide holistic assessment and care are inconsistent. Adult hospice services may be able to address the evolving, palliative nature of their needs.
Introduction Realising the variability in service provision, CHAS and PPWH worked collaboratively to pilot a Transition Pathway. The Pathway involves identification and enrolment of appropriate YA. Joint MDT meetings ensured robust communication of the holistic needs of the YA and their carers.
Methods Information leaflets and the pathway were developed. The pilot is ongoing. Feedback from stakeholders is gathered throughout the pilot to ensure an iterative process. A Mixed method approach with thematic analysis will be used.
Results 9 YA were identified, 5 enrolled: 3 males; 1 female; 1 non-binary individual. Age at enrolment: 19–20yrs. All have a non-malignant diagnosis. 1 has died. Highlighted service gaps: access to YA mental health services and age-appropriate respite provision to support extreme carer burden. Progress has been limited by staffing resources and the pandemic.
The majority of YA accessing the transition pilot have non-malignant conditions
Health, psychosocial and social care needs to remain the focus of discussion
Educational needs of hospice staff have been highlighted due to the emerging population
A robust joint approach allows for establishment of trust and an effective transition
Transition of YA with complex conditions is not currently a health and social care priority
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.