Brain tumours are uniquely devastating and can have physical, cognitive and emotional impacts on those diagnosed, and their family and friends. At The Brain Tumour Charity, understanding and improving the quality of life for people living with and beyond a brain tumour is central to our mission to help everyone affected live longer and better lives.
In 2024, we launched a dedicated funding award focused on improving quality of life for people living with the effects of a brain tumour. To help bring the best minds together to tackle these challenges, we hosted our first-ever research sandpit event.
The Sandpit
The sandpit is a two-day event that brings together experts from many different areas of care. A mix of researchers, doctors, nurses, psychologists and physiotherapists work together to identify and aim to address the gaps in quality of life needs for the brain tumour community.
Importantly, members of The Charity’s Involvement Network – individuals with lived experience of a brain tumour – are also present. Their insights shape research priorities, ground discussions in real-life experience, and ensure that projects would meet the true needs of those affected.
Quality of life research is really important because I think we have a responsibility to make sure that the patients that we look after are not just surviving but thriving
Dr Sarita Depani, GOSH
Children and young people
The theme for the 2024 sandpit focused on improving quality of life for children and young people living with the effects of a brain tumour. These individuals often face a range of long-term challenges that impact their overall wellbeing. These challenges can affect various aspects of their lives, including cognitive, emotional, and physical functioning.
Cognitive difficulties, such as problems with memory, concentration, and learning, can make it harder for them to keep up with schoolwork and daily tasks.
Emotionally, they may experience increased levels of anxiety, depression, or difficulty managing stress, which can complicate their relationships with family and friends.
Physically, they may struggle with fatigue, coordination issues, or other side effects that can make everyday activities more demanding. Together, these challenges can lead to difficulties with social interactions, feelings of isolation, and a higher risk of developing mental health issues. As a result, these young people require ongoing support to help them navigate their recovery, return to school, and transition to independence.
When I was diagnosed my initial thought was “Would I die?” I now live with the side effects from harsh treatment, and these include terrible short term memory loss and fatigue. I want to keep going and do so many things, but sometimes I just can’t.
Rachel Hirst, Young Ambassador
Our sandpit event was designed to fund research into how best to support children and young adults in their recovery and improve their quality of life.
Four new research projects
The Brain Tumour Charity is proud to announce that we have funded four project teams from the sandpit. These talented scientists and clinicians have been awarded a total of £380,000 for their innovative research projects that aim to improve quality of life for those living with the effects of a childhood brain tumour.
Their work spans a range of topics, from how to manage fatigue, to looking at differences in the genetic code. Read more about them below:
Education
This research, led by Dr Sarita Depani at Great Ormond Street Hospital, is looking at returning to education following a brain tumour. It aims to identify what is currently working in schools around the country, and what is missing. The team will develop a national approach to ensure consistent, long-term support for children starting back at school after a brain tumour diagnosis.
Fatigue
Based in Cambridge, this project is led by Occupational Therapists Ms Vicky King and Ms Sharon Tuppeny. It aims to test how effective and practical a fatigue management therapy called SpoonieKids is in children living with the effects of a brain tumour, whereby ‘spoons’ are used as a currency for energy levels.
Fatigue is one of the most common and persistent challenges faced by children living with the effects of a brain tumour, often continuing long after treatment has ended. Improving our knowledge in this area will lead to better tools for families to both understand and help their child manage their fatigue day-to-day.
THRIVE
This research, led by Dr Faye Didymus, will focus on supportive and lifestyle strategies aimed at improving quality of life for children living with a brain tumour. It will explore what’s currently effective, identify gaps in support, and listen to the lived experience of those affected. The goal is to create a roadmap for better, evidence-based support, while also highlighting areas for future research.
Genetic code
This study, led by Dr Debbie Hicks and Dr Akanksha Senapati is taking place across three major UK children’s hospitals – Newcastle, Manchester, and Liverpool. It will investigate how genetics may influence quality of life. Researchers will collect blood samples and perform cognitive tests to better understand why some children have more long-term effects than others.
By identifying genetic risk factors, this research could help doctors predict which children are most at risk of long-term effects and develop targeted interventions to protect and improve their cognitive health. The study will also lay the groundwork for a national survivorship research network, helping to improve long-term care and support for survivors.
We’ll be closely following the progress of these researchers and sharing updates on their work in the months and years ahead. We’re really excited to see how their work will join us in helping those affected by brain tumours live longer and better lives.