Spotlight Interview - Dr Bethan Lloyd-Lewis

To mark Childhood Cancer Awareness Month, we caught up with Bethan, patient representative for the ECMC Paediatric Strategy Group, about her experience working with the Network and why she is passionate about public involvement in research. 

 

What motivated you to join the ECMC Paediatric Strategy Group as a patient representative? 

I am a previous paediatric cancer patient, being first diagnosed with Stage 4 Hodgkin’s lymphoma at the age of 7, followed by two relapses over the course of 5-6 years. I am also a researcher in the biomedical sciences and appreciate the importance of involving patients and the public in my work. Both these experiences prompted me to join the ECMC Paediatric Strategy Group as I wanted to contribute to discussions focused on identifying new research opportunities and strategic initiatives for the benefit of young cancer patients. I am particularly passionate about strategies focused on developing more specific treatments that minimise the risk of late-effects in these patients. Ensuring the accessibility of treatments and trials to all patients, regardless of their location, socio-economic status and race is also something that I strongly advocate for. Contributing to the ECMC Paediatric Strategy Group in this role, and Cancer Research UK’s Involvement Network more broadly, is my way of giving something back to the cancer community, and to the medical and scientific teams working tirelessly to improve cancer care for all patients.   

 

How have you found your experience so far?

Thus far, the experience has been immensely rewarding and stimulating. I have learnt a lot about how early phase clinical trials in children and young people with cancer are run across the UK, and the essential role the ECMC Paediatric Network plays in this process to ensure access to all eligible patients. I am well supported in my role; the Paediatric Network Manager provides me with the information I need in advance of meetings and regularly updates me on the Network’s activities. I have enjoyed witnessing the collaborative nature of the network, and the passion, empathy and care the clinicians and translational scientists have for children and young people with cancer. The Network is in the process of preparing for their ECMC Quinquennial Review and it’s been fascinating to learn about the exciting future opportunities for translational research in childhood cancer. 

 

Why do you feel is it important for people affected by cancer to share their view and experiences in these forums? 

During my treatment, my family and I were supported by a charity originally founded by a group of families who advocated for improved welfare and social support to those affected by childhood cancer. As a scientist I have also seen first-hand the benefits gained through involving patients and the public in research design and implementation. People affected by cancer have a unique perspective that can add enormous value to the thinking and work of an organisation or network. Influencing seemingly minor issues can lead to substantial improvements to the physical and mental wellbeing of patients and their families. Involvement can entail more work and be challenging to implement, but this does not mean that it shouldn’t be done. The ECMC Paediatric Strategy Group members appreciate this and take great strides to ensure that the voices of patients and their families are considered throughout the network’s activities.