Background With more children with life-limiting conditions surviving into adulthood (Jarvis, Roberts, Flemming, et al. Pediatr Res. 2021; 90(6): 1120–1131) approximately 25% of the overall children’s hospice caseload was of transition age. Families expressed how challenging and stressful this period was, both practically and emotionally. A significant need to transform support was overwhelmingly apparent, particularly in the absence of a national framework alongside a lack of investment and resource. It also became clear there is disparity between services available to a young person (aged 18) in a children’s hospice compared to accessing services from an adult hospice.
Aims To build a transition service informed by a steering group involving hospice Clinical Services Leads and representation of families, to facilitate and inform a review of the current offer of support; to ensure quality improvement and equity of service, with an identified caseload. To review multi-professional approaches and service availability within differing referral criteria.
Extensive research and information gained from the National Institute for Health and Care Excellence, Together for Short Lives and Hospice UK, alongside the lived experiences of families.
Development and implementation of unique Transition Framework.
Restructure and recruitment of designated posts.
To work collaboratively with adult services.
Results Contacting families to provide bespoke support has been key to understanding the needs of families, putting the voice of the young person at the centre. Creating opportunities for peer-to-peer support and developing these support programmes has been invaluable in connecting families, through hybrid engagements and collaborative working.
Conclusions Transition support has been transformed, with increased understanding of legislation, defined support service offer and enhanced communication with social and health providers. Needs of young people have been identified, and support given to all family members moving into adult services. Access to psychosocial Family Support defined after young person’s 18th birthday with start of transition plan in place from 14 years old.
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