On 25th April Caroline Dinenage MP for Gosport brought forward a debate on Childhood Cancer Outcomes to the House of Commons. We are grateful that this ever-important topic has been brought to the House, and thank Sophie’s mum Charlotte who is responsible for bringing this debate to the attention of those who can facilitate change, shockingly for the first time. 

We stand behind Ms. Dinenage’s call for a Childhood Cancer Mission to investigate how we can improve detection, treatment and care for childhood cancer. As a parent-led charity we are unfortunately all too familiar with the many devastating stories that were presented in the House, and have long been calling for change, particularly in the neuroblastoma landscape. 

We strongly support the many calls for better investment in childhood cancer research. Taiwo Owatemi MP for Coventry North West said “It’s not right that the burden of raising funds (for research) should fall on the shoulders of bereaved parents.”, and it was echoed by Kirsten Oswald MP for East Renfrewshire that “Charities do too much of the heavy lifting.” As a charity we are passionate about driving and funding innovative clinical research into better treatments for neuroblastoma and are forever grateful to the families who tirelessly raise funds, but whole-heartedly agree that it is not acceptable for this burden to fall on their shoulders. We are very aware of how much more could be achieved if a better infrastructure for public funding into childhood cancer research was built. Currently, only 3% of public cancer funding is directed to child-specific diseases. This must change if we are to expect an improvement in treatment for cancers such as neuroblastoma, where current therapies are extremely toxic and often result in long-term effects. 

Beyond funding, any strategy to improve treatment and care for children with cancer must do so in the most accessible way possible. CEO Gail Jackson and Chair of Trustees Nick Bird recently met with Kim Leadbeater MP for Batley and Spen to discuss the situation that many families face after a neuroblastoma diagnosis, which is the gruelling decision-making around accessing treatments and clinical trials that are not available on the NHS. We are determined for this issue to be brought into this debate, as it is one of the many additional emotional burdens that fall on childhood cancer families, and one which may be addressed by better research infrastructure in the NHS.

We look forward to seeing the outcome of the debate, hoping that any childhood cancer mission or strategy that does follow can encompass the many complex issues that exist in this landscape, through open conversations with the patient and parent community. We will ensure that our continued work with Kim Leadbeater and a wider group of MP’s will help to drive forward parliamentary discussion and raise awareness of this crucial topic for the benefit of all children facing a childhood cancer diagnosis. 

Read the full debate transcript here: https://hansard.parliament.uk/Commons/2022-04-26/debates/F9557187-3ED3-4319-A4F7-42AAE1C947E9/ChildhoodCancerOutcomes