Helen Pearson, Advanced Nurse Practitioner in solid tumours, researcher and CCLG member, explains how the findings of a study have helped co-design an important new web resource to support families.
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.
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.
Gail Beaumont, a dedicated hospital teacher at Sheffield Children’s Hospital, shares insights into her unique role in providing education and support to young patients during their hospital stays.
Emily Varley, a school special educational needs and disabilities coordinator (SENDCo) based in Leicestershire
Louise Robinson is a neuro-oncology outreach nurse specialist at East Midlands Children’s and Young Persons’ Integrated Cancer Service. Here, she emphasises the importance of collaboration and explains how a support pathway helps young patients with their education.
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.
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.
