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Follow the Child

Follow the Child

Planning and Having the Best End-of-Life Care for Your Child

Sacha Langton-Gilks

Quick Overview

A child or young person with a terminal illness needs the best possible end of life care plan. This book will help guide families through the entire process, giving information about available support, what questions you should ask and how to care for your child at home.
Details Price Qty
Paperback / softback
2018, 8.78in x 6.73in / 223mm x 171mm, 232pp
ISBN: 9781785923463
2018, ePUB, 80pp
ISBN: 978-1-78450-680-3
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Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside tender observations of how such things worked in her own family's story.

The book also includes a template person-centred planning document, developed by experts in the field.
Empowering and reassuring, this book will help families plan and ensure the best possible end-of-life care for a child or young person.


'This beautiful and heartfelt book is full of meaningful stories and concrete advice for families and healthcare providers caring for children with serious illness. It is a treasure and a wonderful resource that can help us all continue to love and support children throughout their lives.'
- Jori Bogetz, Assistant Clinical Professor of Pediatrics, UCSF Benioff Children’s Hospital

'This invaluable book will be of enormous help to other parents treading this rather tortuous and sometimes agonising path towards top quality care at the end of life. It is a heartfelt account of Sacha's personal experience, with useful practical information, helpful insights, and guidance supporting better conversations and choices.'
- Keri Thomas, National Clinical Lead, The National GSF Centre for End of Life Care

'In openly and honestly sharing the "difficult conversations" she had with her son, his medical team, and family and friends, Sacha has reframed the narrative around paediatric palliative care to show that a good death is possible when end of life planning is done well. Follow the child is both a beautiful account of a mother's love and a practical guide for anyone caring for a life limited child'
- Stephanie Nimmo, Author, Was this in the plan?

'This book would be extraordinarily useful for any parent faced with the problems of a dying child. Anybody working in palliative care, particularly pediatric palliative care, would benefit from reading this book.'
- International Association for Hospice and Palliative Care


By (author): Sacha Langton-Gilks


Click here for a downloadable PDF guidance and toolkit – Integrated Person-Centred Planning for Children, Young People and Families Receiving Palliative Care.