Charlotte Hillyard’s daughter, Jess, was diagnosed with a brain tumour in May 2023 aged three. Knowing the importance of peer-to-peer support, Charlotte and her husband, Lee, set up Walking Warriors Essex earlier this year to bring together families of children with cancer to share their feelings and experiences.
Caroline Cleaver is a proton beam liaison nurse at Manchester Children’s Hospital and CCLG member, whose twin sister was diagnosed with leukaemia when they were 19 years old. She tells us how this inspired her career in children’s cancer nursing and what helps her build relationships with patients and families under her care.
Dr Sarah Evans, Head of Research at CCLG, describes what patient and public involvement (PPI) involves. PPI is about researchers and those who fund research teaming up with people who have personal experience with a health condition. This collaboration helps make sure that research focuses on what really matters to the people it’s meant to help, like patients and their families.
The relationship between oncologists and parents of children with cancer can be complex and unique, with each family having differing needs. Dr Ren Manias, Consultant Paediatric Oncologist at Southampton General Hospital and Contact's medical adviser, tells us how open and honest communication between doctors and parents is key to developing trust and understanding, and why this is important.
