Nicola joined MP’s across the House to urge the Government to increase funding for Brain Tumour research. The debate was granted in Westminster Hall after over 120,000 people signed a petition calling for increased funding to tackle this devastating disease. The Petitions Committee Report found that brain cancer incidence is rising and less than 20% of those diagnosed with brain cancer survive beyond five years. In 2014, brain tumours received 1.5% of the national spend on research in to cancer, and so it calls on the Department of Health and larger cancer charities to raise investment in brain tumour research.
Nicola has been working with the Hall family from Abingdon, who tragically lost their four year old son, Skye, in August 2014. Skye died not from the medulloblastoma he was diagnosed with just over a year before but from radio-chemo neurotoxicity, a severe and ultimately fatal side effect of his treatment, the Milan Protocol. While the Milan Protocol, a ‘Standard Treatment Guideline’, has now been withdrawn from use in the UK, Skye’s parents have learnt that a number of other children also developed severe side effects from it and, crucially, there is no formal infrastructure in place to collect, record and share data about Standard Treatment Guidelines, particularly on adverse effects of treatment.
Skye’s family have set up the charity Blue Skye Thinking, which supports research so that all children diagnosed with brain tumours will have a better chance of survival and a better quality of life post-treatment. Blue Skye Thinking has now funded a four-year research post at the Northern Institute for Cancer Research to identify molecular treatment pathways. Skye’s Mother, Sally, was in Parliament to attend the debate and raise awareness about the adverse effects of treatment.
Nicola held a debate in the House last year to call for greater funding for childhood cancer research, as well as increased efficacy in data collection, which could have saved Skye’s life. Following this, key organisations such as Public Health England, the National Cancer Intelligence Network, National Cancer Registration Service, and the Children’s Cancer & Leukaemia Group have entered in to discussions to get a comprehensive data collection system in place, however there remain stumbling blocks and Nicola has been disappointed to hear again and again that it is too difficult or too costly to implement.
Nicola took the opportunity in this packed debate to support colleagues calls for greater investment, particularly as despite being responsible for more than a third of childhood cancer deaths, brain tumours only receive 6% of childhood cancer funding. She also urged the Life Sciences Minister, George Freeman MP, who was responding to the debate for the Government, to take urgent action to rectify data gathering of Standard Treatment Protocols. A Pilot Scheme is understood to be underway shortly to address these issues, but Blue Skye Thinking and clinicians have identified a number of issues with this- what is needed is a national database to collect information in real time, which will save lives.
If those adverse effects are properly collected, recorded and shared we might be able to avoid more cases like Skye’s and increase survival rates in childhood cancers even further.
Read Nicola’s full speech through this link.
Responding to the debate, George Freeman MP, acknowledged the power of the speeches by MPs attending and the strength of feeling in the hall. He announced a ‘Task and Finish’ working group and the Department of Health looking at areas highlighted by the Petitions Committee report; the inclusion of brain cancer in the Genomics England programme; a commitment to improve levels of earlier diagnosis; and that the National Institute for Health Research (NIHR) will produce a national register within a year to examine how public funds are spent on research. The Minister was clear that the working group would cover issues surrounding data collection and trials.
Nicola says: It is true that we are making tremendous strides in tackling cancer in the UK, 8 in 10 children with cancer survive 5 years or more compared with just 3 in 10 in the 1960’s, but cases like Skye’s should never have been able to happen. The architecture for data collection is in place and I will continue to liaise with the Department of Health about a practical way forward to implement this.
All life saving innovations in cancer are very difficult and given the stakes of the game, I simply cannot accept that this is a problem that cannot be fixed.