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.
Claire Bailey's daughter, Poppy, was diagnosed with stage 4 high-risk neuroblastoma in July 2020 aged four. She writes on how the relationships she’s formed with other families have provided support both during and after Poppy’s treatment.
The Ellen MacArthur Cancer Trust (EMCT) takes young people aged eight to 24 years old on free sailing and outdoor adventures to help rebuild their confidence after cancer. Scott Wilson, of the Trust’s communications team, and Rebecca and Simran, two of the young people it’s supported, describe how the trips help bring people with similar experiences together and why that’s important.
Ruby Abramow was first diagnosed with a rare head and neck cancer aged nine, before relapsing in 2019, when she was 14. Now 19, she tells us how a new, supportive environment gave her the fresh start she needed to take back control of her disrupted education.
Parents and carers of children who have been diagnosed with cancer often have many questions about school and education. Keeley McEvoy, Lead Assistant Headteacher of the Medical Needs Teaching Service working at Leeds Children’s Hospital, explains more about what to expect from hospital teaching, ongoing education support and transitioning back to school.
Naomi Duxbury’s daughter, Mia, was aged four when diagnosed with B-cell acute lymphoblastic leukaemia in September 2021. Here, she tells us about the importance of working closely with Mia’s school to create a safe, supportive and ‘normal’ learning environment for her.
Lauren Bryce’s son, Alfie, had just begun his final year of school when he was diagnosed with leukaemia, aged 15. Here, she tells us about their struggles with the education system after his diagnosis and what could have helped him as he prepared to take his GCSEs.
Sophie Barclay was 15 when diagnosed with a brain tumour, making schooling and exams difficult. Now 18, she tells us how, with the support of her school, she has received a conditional offer for university.
