New book to help children at Evelina London Children’s Hospital facing kidney transplant

A new set of books, tailored to support children with kidney disease have been launched at Evelina London Children's Hospital.

Gifted by Get Better Books and funded by Kidney Research UK alongside John Horniman’s Children’s Trust, the 'My New Kidney’ books aim to help children prepare for a kidney transplant.

The playful, interactive books show children and young people what to expect in the lead up to and after their operation using a fun approach to alleviate any anxiety. With versions for younger and older children, including teenagers, they are designed to encourage the recipients to colour, comment, write questions, draw and stick things in. Completing the books creates important opportunities for families to explore the transplant process together.

The books designed for older children and teenagers take the form of a ‘kidney transplant passport.’ With content that is more appropriate for older children and teenagers, the book will similarly help this age prepare for their operation and understand where their new organ has come from.

Both books have been made bespoke to Evelina London. They include a map of London and feature Evelina London’s iconic penguin – a symbol of the kidney outpatient department.

Almost 100 children in the UK living with a transplant are receiving follow-up care at Evelina London. The renal team perform around 20 children's kidney transplants each year.

Kate Mythen, paediatric renal transplant recipient coordinator clinical nurse specialist at Evelina London said: “It’s brilliant to have fun and engaging transplant education materials in a format designed for children and young people. Having something written like a story book makes a complex medical process more easily understandable. We can use the books to both talk through the process in clinic and then gift to families, meaning they will be able to take it home and look again to become familiar with what will happen when they come in for their transplant. This time allows families to remove the scary element of the unknown at their own pace.”

All children who are preparing for a transplant will receive their own copy of the book, which can be used to talk about the transplant before, during and afterwards.

“We wanted to offer support to families, at what can be a very stressful time,” explained Chris Beyga from Kidney Research UK. “The children will often have been through a great deal in their short lives. The team at Get Better Books has worked closely with Kate and the team at the hospital and created this fantastic guide for children, siblings and their parents.”

Non-profit publishers Get Better Books have previously worked with other children’s hospitals to create bespoke patient materials for children facing a range of clinical conditions. Their designer and illustrator Georgina Potier said: “We started Get Better Books with the goal of creating beautiful, interactive books and communication design to help paediatric patients understand their treatment, alleviate anxiety and get better!”

It takes just 2 minutes to confirm your organ donation decision on the NHS Organ Donor Register. Find out more about the choices available to you and your family on the NHS Organ Donation website.