Neuroblastoma was the topic of debate in the House of Commons yesterday (15 Jun) where Darlington MP Peter Gibson introduced the ‘Treatment of Neuroblastoma’ Adjournment debate at the end of the day’s proceedings.
Neuroblastoma is a rare cancer that affects children. It mostly affects children under the age of 5 years, with less than 100 between the ages of 0 and 14 years being diagnosed with neuroblastoma each year in the UK. Very rarely it can develop in older children, teenagers and adults.
Peter Gibson MP spoke about Luke Bell, a Darlington constituent who lost his life aged 8 to Neuroblastoma.
Luke was an inspirational 8-year-old who died from Neuroblastoma in December 2018, only 21 months after his original diagnosis. His parents, Mark & Rebecca Bell, set up a charity, the Team Luke Foundation, as a legacy to Luke in September 2019.
Speaking in the debate Peter Gibson MP said "Luke Bell was a typical young boy. He loved gaming, rugby, school, playing with his friends and most of all spending time with his mum, dad, and big sister Alysha. He was incredibly active and full of energy.
"I want to share an insight into Luke's diagnosis journey and the lead up to his family hearing those awful words, exactly six years ago, that his symptoms were 'suggestive of cancer'.
Sitting in the public gallery were Luke’s father Mark Bell and Grandmother, Carol Bell.
His parents, Mark & Rebecca Bell, set up a registered charity, the Team Luke Foundation, as a legacy to Luke in September 2019.
Speaking about setting up a charity in Luke’s memory Mark Bell said "The Team Luke Foundation is very much in the spirit of his personality.
"Luke was very inquisitive and had a great interest in the treatment he was going through.
"He was also a very helpful boy, who didn’t like to see any sadness or suffering. He inspires everything we do."
Since Luke's illness, his parents have heard of many children who've had similar experiences of late diagnosis, and whilst Neuroblastoma is a rare disease, the survival rate is comparatively very poor, so catching it early really is key.
Neuroblastoma often starts in the tummy (abdomen), commonly in the adrenal glands or in the nerve tissue at the back of the abdomen. Like other cancers it can spread to other parts of the body and is spread through the blood and lymphatic system. It is caused by the abnormal development of immature nerve cells known as neuroblasts.
There are no known lifestyle related or environmental causes of neuroblastomas, so it is important to remember that there is nothing that these children or their parents could have done to prevent these cancers. 70 out of 100 children (70%) with neuroblastoma survive for 5 years or more after they are diagnosed.
Raising the matter with the Minister for Health and Secondary Care, Will Quince MP, Peter Gibson MP said "Will the Minister work with me, and other across this house, to speed up and improve the diagnosis of neuroblastoma?
"Will he do all he can to increase the pace of research into treatments that are more effective at treating neuroblastoma?
"Will he do all he can to ensure that his department does all it can to raise awareness of Neuroblastoma?".
Responding the Minister for Health and Secondary Care, Will Quince MP said, "I thank my honourable friend the Member for Darlington for securing this important debate".
"I thank him especially for sharing the experience of his constituent Mark Bell, and the challenging events leading up to the devastating loss of his much-loved son Luke to neuroblastoma.
I am pleased that Mark and Carol could be here for this debate. As a parent who has sadly lost a child myself, I send my heartfelt condolences to Mark and his family. No parent should have to go through what his family have; I know that it is a void that can never be filled.
"I am full of admiration for Mark and his family, and following their tragic loss, they established their charity, the Team Luke Foundation, to help other parents in a similar situation.
"I commend and applaud its important work in raising awareness of neuroblastoma and supporting parents in accessing the information and advice that they need.
"Working together with our colleagues in the national health service, the Government have three priorities for cancer care. The first is to recover from the pandemic and the backlog. The second is to get better at early diagnosis. The third is to invest in research and innovation, because we know that things such as genomics and AI have the potential to transform our experience of cancer as a society".
"The NHS continues to do groundbreaking research to improve treatment for children with neuroblastoma. Supported by the National Institute for Health and Care Research and Great Ormond Street, it has identified a new drug target for children with neuroblastoma, with the hope that new, less intrusive therapies will be developed by targeting a developmental cell type that exists only in neuroblastoma tumours after a child is born.
"This team of scientists and doctors at Great Ormond Street and University College London has been awarded a £519,000 Welcome Trust innovator award to continue its ground-breaking research using image-guided surgery for childhood cancers—that is specifically for neuroblastoma".
Watch the full Adjournment Debate here: https://fb.watch/lbYgzIR27b/
Team Luke Foundation Information: https://teamluke.org.uk/
