Together, we are stronger
For my latest blog post I’ve chosen to focus on parenthood, inspired by Mother’s Day this year. Mother’s day is always a poignant day for many of us, for so many different reasons. This is my first Mother’s day with Solving Kids’ Cancer, and so it feels right that I focus on the mothers and fathers of children with neuroblastoma.
In the majority of cases we first have contact with parents, usually mums or dads, following their child’s diagnosis with neuroblastoma. Parents usually take the first steps and contact us as they’ve heard from other families in the neuroblastoma community that we provide support and guidance to families seeking more information about current clinical trials. Once they’ve made that first contact, they learn that we provide so much more than this, in the form of expert and empathetic parent-led support from the point of diagnosis, right the way through the treatment journey. In a recent survey of families in our network, parents tell us that they wish they had learned about us at an earlier point – right from diagnosis. We’ve listened to this feedback and are in the process of exploring different ways we can ensure we reach as many families as we can as early as we can. The reason for wanting this earlier contact is because our Family Support Service is parent-led – by parents with lived experience of caring for a child with neuroblastoma – and they truly understand, in a way that no one else can, what parents are experiencing at that moment.
I could only ever guess at what that experience must be like for parents, and it’s not my story to tell. But what I will say is that I draw huge personal strength and inspiration from the parents I have come to know. Being a parent-led charity means that we need to be informed at every level by parent experience. From how we deliver family support, to how we establish our research priorities. We do this through incorporating the parent voice and experience within staff we employ, volunteers we recruit and Trustees we appoint. Our staff team comprises professionals who have been directly affected by neuroblastoma working alongside other professionals within the charity and external experts in the clinical and research communities, all with a shared vision of a future where no child dies from neuroblastoma, or suffers due to its treatment. This vision is the golden thread that runs right through the heart of this charity and is what inspires and unites us all to consistently push at the limits of what might be possible.
When I joined the charity as the new CEO last year, I was very conscious of the charity’s proud parent-led ethos and equally aware that not having the personal experience myself might be viewed by some as a disadvantage. Having spent time listening and learning from parents who have so generously shared their stories with me, I’ve found myself becoming one of the most passionate supporters of that parent-led title – our charity would simply not be the charity it is without the integral involvement of parents at every level. The depth of knowledge, the empathy, the dedication and the unwavering commitment is frankly, awe-inspiring and I am quite clear that the significant difference this charity has made through the investment in clinical research and the identification and push for more and better treatment options for children here in the UK would not have happened had we not been parent-led.
I’d like to finish this post by extending my deepest thanks to all the parents who have contributed to this charity in so many countless ways. I’m proud to work with you all. Together, we are stronger.