Stevenage teenager who was diagnosed with a rare brain tumour aged 12 during the COVID-19 pandemic is using his experience to help shape future care of young patients at Cambridge Children’s Hospital.
Luke was part of a study funded by Action Medical Research which shed light on how the pandemic affected the diagnosis, treatment and experiences of children and young people diagnosed with a brain tumour.
The study led by Dr Ibrahim Jalloh from Cambridge University Hospitals NHS Foundation Trust (CUH) and Professor Rachel Isba of Lancaster University found that while medical outcomes for children with brain tumours did not appear to be significantly altered by the pandemic, the emotional and practical toll was profound – resulting in additional stress to an already life-changing diagnosis.
Luke’s symptoms – headaches, fatigue and double vision – began in 2019, but COVID-19 restrictions meant that several appointments were delayed or cancelled. By the time swelling was detected on his optic canal, Luke urgently needed surgery.
Luke’s dad, Peter, says: “Luke went through a life-changing diagnosis and treatment journey during the unprecedented COVID-19 pandemic. We are so grateful for the support we received, but it was challenging and isolating due to restrictions imposed by the pandemic. Research that aims to better understand the impact of widespread disruption on children like Luke will hopefully ensure that in the future families like ours won’t experience delays or feel isolated.”
Luke had brain surgery twice followed by proton beam therapy. His treatments have caused damage to his hypothalamus, an area of the brain that controls body temperature, hunger and thirst. The damage led to a loss of impulse control and Luke putting on weight. The procedures left Luke with life-long hormone deficiencies requiring daily medication. Putting on weight due to damage that occurred has been challenging for Luke. In addition to this, treatment during lockdown was especially isolating as only one parent could stay with Luke, visits were restricted, and his younger brother was unable to see him at all.
Despite these difficulties, Luke returned to school, thrived in his GCSEs, and is now in sixth form studying A levels. He hopes to become a primary school teacher. Importantly, he is also using his experiences to help others, as Vice Chair of Cambridge Children’s Hospital Youth Forum, helping to shape the future of care for young patients.
Dr Ibrahim Jalloh, Consultant Neurosurgeon at Addenbrooke’s Hospital, part of Cambridge University Hospitals NHS Foundation Trust, said: “This study provided an invaluable space for children, young people and their caregivers to reflect and share their experiences of navigating a life-changing diagnosis during an unprecedented global crisis. We found that while treatment and survival outcomes remained broadly consistent, the emotional and practical impact on families was immense, going well beyond the challenges typically associated with this diagnosis."
Dr Caroline Johnston, Senior Research Manager, Action Medical Research, says: “Action Medical Research funded several projects to investigate the devastating impact of the COVID-19 pandemic on the lives of children and young people. We are committed to funding research that will ultimately improve the health and wellbeing of children and young people. The findings from this research offer practical insights into how healthcare services could be improved during future disruptions, so that families are never left feeling unsupported or alone at such a critical time.”
Find out more about the COVID-19 research funded by Action Medical Research: https://action.org.uk/research/research-we-fund/covid-19-and-long-covid.