For this CEO Blog edition, I wanted to talk about my experience of being part of the National Neuroblastoma Nursing Group (NNNG), a group part-funded by Solving Kids’ Cancer and delivered in partnership with CCLG. The NNNG is a sub-group of the RCN/CCLG Children Young People’s Nursing Group. The NNNG was established by Helen Pearson, an Advanced Nurse Practitioner Solid Tumours at the Royal Marsden as well as a NIHR Clinical Doctoral Research Fellow. Helen is well known amongst the neuroblastoma community and is a passionate advocate of advancing science and understanding of the disease and identifying ways to be able to support parents throughout the treatment pathways. The group is comprised of cancer nurse specialists and research nurses involved in the care of children with neuroblastoma across the country. Each nurse volunteers her time to attend meetings and often progresses pieces of work in between meeting times, and all of this is above and beyond the work they do day-to-day. To me this is such an example of how absolutely dedicated the professionals involved in the care of children with neuroblastoma are – it’s not just a job, but a vocation.
An example of the work of this group is the recent development of a script for an animation video that will be developed with funding the group applied for. The video will explain each element of the new SIOPEN High-Risk Neuroblastoma 2 phase 3 clinical trial that will be imminently available in treatment centres across the country. To my knowledge, none of the nurses involved have been involved in writing scripts for animations, yet they rolled their sleeves up and spent many months of focussed time carefully crafting the right words which would help to clearly explain sometimes very technical and scientific terms and processes in layman’s language to help parents to understand the complexities of the neuroblastoma treatment pathway. What struck me was that throughout this piece of work, their focus was always on the parent and the child and they continually referred back to this to ensure that what is ultimately produced will be as helpful as possible to parents – they recognise that what parents need most at this most critical time is comprehensive information, with absolute clarity. The voice of parents is so important to them in fact that Helen asked for the script to be reviewed by our Parent Involvement Forum which she then attended herself to get feedback directly. The animation project is in its final phase and we are looking forward to seeing the end result of all this hard work.
So this blog is dedicated to all the nurses involved in the NNNG, and to all involved in the care of children and their families with neuroblastoma across the country. It’s a privilege to be part of your group and to be witness to your dedication and commitment to children.