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Palliative and End of Life Care for Children and Young People

Childrens and young peoples’ palliative care: 

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child's life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. (Scottish Children and Young People's Palliative Care Executive Group, 2012)

 

PELiCAN Paediatric End of Life Care Network  

In 2012, SCYPPEx (Scottish Children and Young People’s Palliative care Executive) published a ‘Framework for the Delivery of Palliative Care for Children and Young People’  which sought to specifically support and promote the further development of holistic palliative care for the 0-25 years age group. Aligned to this framework SCYPPEx also commissioned the ChiSP (Children in Scotland requiring Palliative care) study in 2015. This study identified that there are approximately 2200 children and young people who have end of life care needs every year in Scotland. This includes around 200 children and young people with a life shortening condition that will die each year. Recommendations of the study stated that children and young people in Scotland should have access to dedicated end of life care.
In 2013 the Trieste Charter set out the rights of the dying child across the EU. This includes the right to have access to effective treatment, through qualified, child specific, comprehensive and continuous care, in an appropriate setting for his/her age, needs and wishes. It also details the right to have access to child specific palliative care services that respect the child’s best interests, and to avoid the child being subject to futile or excessively burdensome practices, and to avoid therapeutic abandonment.
In order to provide Scotland with dedicated and equitable access to end of life care, the PELiCaN network Managed Clinical Network was commissioned by NHS National Services as a National Managed Clinical Network in April 2019. The network aims to support delivery and improve access to high quality, patient and family centred, end of life care for children and young people; regardless of age, ethnicity or geographical location. For further information please visit the website - https://www.pelican.scot.nhs.uk/ 

PELiCaN Newsletters - 

2019- Autum- Newsletter V1.pdf 

2019-20WinterNewsletterV2.pdf

 

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