Charley Scott’s daughter was diagnosed with cancer as a two-year-old. She tells us about an accessible new information resource that she and her husband Jon have created to help other children and families, influenced by their own experiences.
When our daughter, Jess, was diagnosed with T-cell non-Hodgkin lymphoma, we were given some information about her cancer, but we wanted to read and understand more. We were also extremely conscious of trying to explain to Jess the procedures she was going to have and what they would entail so she wasn’t frightened. We looked for visual aids to help us but couldn’t find anything that would connect with a then two-year-old. Both my husband and myself are filmmakers and creatives and could see the value video content could have to children going through treatment. So, we made it our mission to try and help, and The Oncology Guide was born.
How it will help families
We’ve carefully designed the resource so it’s accessible everywhere on all devices and it’s free for everyone to use. The written medical information is provided by the wonderful CCLG and the medical information in the films is from Kings College Hospital NHS Foundation Trust. We wanted to create visual aids of procedures and treatments to help explain to the children what was happening, hopefully reducing their anxiety. We understand children who are going from school, clubs and playdates with friends to being thrust into cancer treatment can be extremely daunted and frightened, and so can the parents and families, too. So, we hope this resource will be able to inform and help guide the whole family.
Why it’s innovative and different
The Oncology Guide is a first-of-its-kind web resource that brings reliable information from trusted resources into one place. It’s the only place dedicated to providing specialist, child-focused oncology guidance. The videos that feature are presented by children who have either been on, or are going through, treatment, and therefore have experienced much of what they’re talking about. This gives them a unique perspective and one that will help resonate with those newly-diagnosed children and families that may watch them.
We feel we’ve been incredibly blessed to have had some incredible support by organisations and charities who shared our passion for creating this resource. CCLG for the written information, Kings College Hospital NHS Foundation Trust for their medical expertise and filming location, Chartwell Cancer Trust as main funders, Kingfishers Charity for further funding, Design Bridge for the incredible design and Arcade_xr for building the app for us. We also need to give a special mention to the wonderful children who took part in the films. We’re very proud of them and of what we’ve all achieved. We hope it can go some way to helping families like ours in their time of need.
We want to continue to develop the app with further written information, podcasts, more video content and localisation for other territories and languages making it accessible to even more children and families. We’re also already working on an adult version of The Oncology Guide.
For those families reading this who are going through treatment, we are so sorry you are on this journey. Our biggest piece of advice is to go one day at a time. We hope the app will go some way in helping your family, and we send lots of love.
From Contact magazine issue 102 - Spring 2024
