As part of Roald Dahl's Marvellous Children's Charity's partnership with the Burdett Trust for Nursing, we have been working with The Jessie May Trust: a charity that provides free hospice at home care to families of terminally-ill children living in the South West of England.
The Voice of the Child project aims to understand the needs of children that are unable to communicate verbally using a ‘Communication Passport’. It’s a simple, paper-based tool that allows healthcare professionals to communicate behaviours, likes and dislikes of the children they work with in their own ‘voice’ and accompanies the child wherever they go, enabling increased understanding of a child’s individual and non-verbal cues.
The project has been adapted from a version first created by NHS Scotland, and highlights how important research and knowledge-sharing is across the UK. It is hoped that the findings from the project can benefit many more seriously ill children and their families. The project has also meant that all Jessie May Trust nursing staff have been trained to use the tool, so all of the 96 children on the trust’s caseload can benefit.
Liz Lewington, the project lead said, “The Communication Passport offers the best way of understanding each child’s needs and we’re really excited to share the results with other health care providers in the UK". Faith (pictured) is mum to her daughter Sophie who can’t communicate verbally and has benefited hugely from the Communication Passport.
Faith said, "It's a really welcome addition to Sophie's care. It has given us the peace of mind that those caring for Sophie will be able to interpret her nonverbal cues. It has given us the confidence to take true respite, safe in the knowledge that Sophie is in the very best of care. Her needs and health change constantly and so the passport is a vital tool for Sophie’s carers to understand those changing needs day-to-day.”
We are especially proud to support the project in the West Country, where Roald Dahl spent much of his own childhood. The project has already helped improve the happiness and wellbeing of many children in the area, and we look forward to sharing the project more widely in the future.
Find out more about our Marvellous Nurse Inventing Room projects.