Nicola held a debate in the House of Commons on improving treatment for childhood cancers, an issue Nicola has taken on following the tragic case of Skye Hall from Abingdon who died last year after being diagnosed with Metastic Medulloblastoma- a brain tumour.
While the overall story of childhood cancer treatment over the past 30 years is a positive one: eight in ten children with cancer survive five years or more, compared with just three in ten in the 1960s, childhood cancer remains the leading cause of death in children and teenagers in the UK and 700 children and young people are diagnosed with a brain tumour every year. Despite being responsible for more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding.
The Government is clear that improving cancer outcomes, including for children, is a key priority, and NHS England has recently announced a new independent cancer taskforce to develop a five year action plan for cancer services aimed at improving survival rates and saving thousands more lives. During the debate Nicola urged the Minister responding, Jane Ellison MP, to ensure the Government does all it can to fund and encourage more research into childhood cancers. She also asked the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer is the right balance, and urged the Government to maintain investment in the Health Research Authority which does important work in streamlining the regulation and governance processes for clinical research in the NHS.
Nicola raised Skye’s case, as at the moment only about 50% of childhood cancers are part of a clinical trial and the remainder are treated using standard treatment guidelines. The standard treatment guideline that Skye was put on, the Milan Protocol, a tough treatment regime involving chemotherapy followed by radiotherapy and then further high-dose chemotherapy, has now been suspended in the UK. Skye died due to the side effects of this treatment just a year and two days after his diagnosis.
Skye’s parents, who came along to watch the debate, have shared their experiences with Nicola, who has pressed for better data collection for cancer treatments and their side effects. Worryingly, there is not a strong system in place for the collection of this data on non-clinical trials, and as this data is used by doctors to make life-saving decisions for their patients this must be addressed. Nicola urged the Minister to move to address this, and she committed to ensuring this is raised with Public Health England and the National Cancer Intelligence Network to consider how those data might be collected. The Minister also stated that NHS England has recently set up a children, teenagers and young adults group, reporting to the independent cancer taskforce, which will look into issues around standard treatment guidelines, including the Milan Protocol.
Nicola will, of course, be following up on all of this and will be meeting with the Chief Executive of Oxford University Hospitals Trust, as well as the Clinical Lead from the National Cancer Intelligence Network to discuss this further.
To read a transcript of the debate, and Nicola’s speech in full, please follow this link: Childhood Cancer Debate
Nicola says: Here in Oxfordshire we are lucky to have first class research facilities and world leading experts doing vital work on ground-breaking medicines, earlier diagnosis and ways to prevent the often life-long consequences of cancer treatments. This is the life-saving research that we must fund but also enable by simplifying unnecessary bureaucratic barriers if we are to prevent, control and cure this devastating disease.
I was glad to have the opportunity to raise all of this on the floor of the House, particularly with Skye’s parents, Andrew and Sally Hall, in the public gallery to watch the debate and see how Skye’s case can help other children suffering with cancer. I have been struck by their bravery in the face of losing their child in this most distressing of ways, and I look forward to working with Ministers in the Department of Health and the relevant agencies to find a solution to the issues we are facing.