By Dr Kate Woodthorpe
whose son was born with a life threatening condition and spent three months in NICU
1. Children’s Palliative Care is different to adult palliative care. Palliative care for children is for children who have a life limiting or life threatening condition; they are not necessarily in receipt of a ‘terminal’ diagnosis as it is conventionally understood in adult palliative care.
2. Palliative care for children has a ‘total’ approach. It includes medical care and symptom management, care in the community and respite breaks.
3. There are around 49,000 children in the UK receiving palliative care. The number of children needing palliative care is expected to grow as children born with complex medical needs can be supported in neonatal intensive care units and beyond.
4. As a parent, when you are told your child is in receipt of palliative care services it hits you like a ton of bricks. It is hard to describe the impact it can have on a family. Words that spring to my mind are shocking, surreal, and life-changing.
5. Being a Mum of a child in receipt of palliative care is akin to being a project manager and a nurse as well as a parent. I call it parenting ++.
About Dr Kate Woodthorpe
Dr Kate Woodthorpe is a Senior Lecturer in Sociology in the Centre for Death and Society at the University of Bath. She is Mum to two children. Her son, William, was born with a life threatening condition and spent three months in NICU in 2018.
