Condition Management

Communicating Lily’s Pain

A resource that explores the communication challenges that can occur around a child experiencing pain.

By Chloe French · Published: January 17, 2020

Some of the children WellChild support experience pain on a daily basis, and their parents have become skilled in assessing and managing their child’s pain. When a new pain occurs or a known pain worsens, parents turn to health professionals for help.

The above video explores some of the communication challenges that occur when a parent of a child, like Lily, asks for help for their child’s pain. The information sheet available for download below is a guide for parents of children with complex needs who cannot communicate verbally.

“This is needed so much for clinicians who have to step in to manage maybe a new onset of symptoms and have not been with the child for their whole journey or maybe had no experience of complex health”

Hayley - WellChild Parent Ambassador and member of the WellChild Family Tree

The ‘Communicating Lily’s Pain’ animation and downloadable resources were funded by WellChild and developed by Professor Bernie Carter and Rob Young from Edge Hill University, with help from members of the WellChild Family Tree who have children with cognitive impairment and complex health needs. The families contributed their knowledge and experience to ensure the resource helps both parents and health professionals to work together to understand the communication challenges that can occur.

Downloadable resources for professionals are available below.


Edge Hill University have asked individuals to share their thoughts on the ‘Communicating Lily’s Pain’ resource. To share your opinion, fill out this quick 2 minute survey

Research and impact

Read about the research in more detail, its results, and the impact of the project in a publicly available paper here >>

This resource has been endorsed by the Royal College of Nursing.

A huge thank you to WellChild Parent Ambassador Jill for recording the voice over for the animation, and to all the parents who contributed to the creation of this resource.

by Professor Bernie Carter, Rob Young and James Munro, Edge Hill University

Resource funded by WellChild

First published January 2020

Last reviewed February 2022

Next review due 2023