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.
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.
Diffuse midline glioma is a devastating brain tumour, affecting primarily young children. There’s currently no cure for this disease and treatment options are limited. This is mainly because this type of tumour is well-protected from drugs by the ‘blood-brain barrier’. This barrier physically blocks all medications from entering the brain. Our group has developed new methods of bypassing this barrier using focused ultrasound.
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.
Lily Morris was diagnosed with acute lymphoblastic leukaemia (ALL) in 2022 aged 15. Now 16, she tells us about its impact on her GCSE preparations, and the support she’s received from her school and friends as she transitioned back into full-time education.
Dr. Ren Manias, Consultant Paediatric Oncologist at Southampton General Hospital, explains that while a cancer diagnosis impacts a child's learning, various support options—including hospital schools, home tutoring, and remote learning—are available to help maintain educational continuity and emotional wellbeing during and after treatment.
Emily Varley, a school special educational needs and disabilities coordinator (SENDCo) based in Leicestershire
Charlotte Bowling's daughter, Amelie, was diagnosed with acute lymphoblastic leukaemia (ALL) in June 2019 aged six. Charlotte tells us about the support her daughter and her family received from her school, including an innovative way of ensuring Amelie was involved even when not physically present.
