Children and their families will take many different journeys depending on their own needs and circumstances. The prime intention of the Together for Short Lives pathways is to provide a means for developing essential components that could underpin more detailed and bespoke local pathways. They focus on putting children and families at the centre of a planning process, with the aim of delivering integrated services in response to individual needs.
We advocate a care pathway approach to delivering care and support to children and families throughout their journey; from diagnosis to end of life and into bereavement. We published the world’s first care pathway for life-limited and life-threatened children, A Care pathway for children with life-threatening and life-limiting conditions in 2004 (updated in 2013), followed by A Transition care pathway for young people with life-threatening and life-limiting conditions in 2007 (updated in 2015), A Perinatal Pathway for Babies with Palliative Care Needs in 2017 and A Care Pathway to Support Extubation within a Children’s Palliative Care Framework in 2011. This care pathway approach, now widely adopted across the UK, has helped to improve the family’s journey throughout their child’s life and eventual death.
Our pathways are guided by standards at each different stage of the journey. They aim to improve the provision and consistency of care and support to children and families, and will help provide a clear pathway from diagnosis or recognition, through ongoing care to the child’s end of life and into bereavement. Each standard is then supported by a series of goals, which combine to achieve the standard.
A Standards framework for children's palliative care is available here, setting out the key standards that form the back bone of all four of our care pathways, for easy reference. It also includes self-assessment audit tools relating to these standards, so you and your colleagues can map how your service currently performs and think about how to develop the areas where the standards may not be fully met.