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Many children with life limiting, long term conditions are living into adulthood as a result of advances in medical care. This presents a challenge for those who provide and commission services since many adult services currently do not meet the specific needs of this group of individuals.
Young adults and their families may experience anxiety about no longer being able to access care and support from services and staff with whom they have developed a close relationship. This can be particularly difficult when the young adult may be approaching the end of their life. As with many conditions experienced by adults, prognostication and recognition of end of life can be very complex and emotive for everyone involved.
There is wide spread consensus that in order to ensure a successful transition the process has to start early with full involvement of the young person and family. Better Care Better Lives (Department of Health 2008) identifies the need to ensure that transition should be ‘a planned and purposeful process'.
When a child is approaching the end of life there has to be an integrated approach to encompass planning for the death of the young person whilst considering how their individual care needs can be met by adult services. This must also take into account the needs of families and carers. In some cases there will have to be decisions made about whether it is appropriate to transfer a particular child and some degree of flexibility regarding criteria for accessing services.
This requires a coordinated approach with an identified key individual ensuring that all aspects of care and support are adequately addressed. The Association for Children's Palliative Care (ACT) has developed a Transition Care Pathway to support this process.
The End of Life Care Programme aims to share a range of case studies around commissioning and service delivery that demonstrate successful models of transition and partnership. Some useful examples of pathways, forward planning tools and service delivery models are available on this site.
