Communicating Lily’s Pain: parents and professionals working together

Posted on the 17th January 2020

Funded by WellChild and developed by Professor Bernie Carter and Rob Young from Edge Hill University along with parents of children with complex health needs, the ‘Communicating Lily’s Pain’ resource aims to explore some of the communication challenges that can occur around a child experiencing pain.

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 ‘Communicating Lily’s Pain’ resource was developed 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.

“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

This free and downloadable research-based resource is made up of:

  • A short animation for parents, health professionals and other people interested in understanding more about how parents and professionals can work together better. It explores some of the communication challenges that occur when a parent of a child, like Lily, presents asking for help for their child’s pain.
  • Information sheets

The ‘Communicating Lily’s Pain’ resource will be shared with specialist children’s pain teams, other health professionals, people delivering education to health professionals, parents, pain networks and charities.

A huge thank you to WellChild Parent Ambassador Jill for recording the voice over for the animation.

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

For more information, please contact Professor Bernie Carter on bernie.carter@edgehill.ac.uk.

Communicating Lily's Pain animation

“This is a great video for parents too. No parent should feel afraid of advocating for their child because ‘doctors know best’. They don’t always, and the good ones know that”

Louise - member of the WellChild Family Tree

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