Brain Tumours

Baroness Blackwood of North Oxford Excerpts

Monday 18th April 2016 Westminster Hall

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

I am humbled to speak after hearing so many moving personal stories. I am here because of Skye. Skye was five when he tragically died in August 2014, not from the medulloblastoma that he was diagnosed with but from the severe side effects of his treatment—the Milan protocol. We now know that a number of other children also developed similar side effects, and the Milan protocol has now been withdrawn. Skye’s mother, Sally, is here in the Gallery today and since his death his family have shown extraordinary courage, raising awareness of, and funding for, childhood brain tumours and setting up the charity Blue Skye Thinking to support research so that all children diagnosed with brain tumours have a better chance of survival. However, Skye’s story illustrates that, although much is working in childhood cancer treatment, some key areas are in need of urgent improvement.

[Mr Andrew Smith (Oxford East) (Lab)]

As the hon. Lady knows, I lost my dear wife, Val, to secondary tumours and it is a year to the day since she started to have palliative care. I very much share what the hon. Lady said about Skye’s case. Does she agree that, more generally, there is a cruel paradox? Progress is being made in treating other cancers but, because of the blood-brain barrier, that increases the number of people who survive to get a brain tumour. That is a further compelling argument for more research.

[Nicola Blackwood]

The right hon. Gentleman, and friend, has made an important point and I hope the Minister will respond to it. However, we should note at this stage that the overall story of childhood cancer over the last 30 years is positive. Eight in 10 children with cancer survive five years or more, compared with just three in 10 during the 1960s. We should congratulate the Government on that because it is clear that the work and funding we put into fighting cancer is money well spent. As we have heard, unlike most cancers, brain tumours are on the rise and research is underfunded, and because the money spent on cancer is effective, we must put that right.

I want to focus on childhood cancers, for obvious reasons. Despite causing more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. Childhood cancers account for less than 1% of cancer diagnoses in the UK and of that 700 children are diagnosed with a brain tumour every year. It is the most common form of cancer affecting children and the most lethal, killing 160 children every year.

We must consider childhood cancer funding in its own right because children’s cancers are biologically very different from adult cancers and to treat them effectively requires specifically tailored research and treatment. The effect of the funding shortage, ethical challenges and small cohorts mean that 50% of childhood cancers are part of a clinical trial and the remainder are treated using standard treatment guidelines such as the Milan protocol. There are risks with that approach.

As we have heard, cancer treatment is a brutal regime and can cause long-term disability. That is particularly true of childhood brain tumour survivors, 60% of whom are left with life-altering disability. In a few cases like Skye’s, these effects can be fatal.

[Kevin Foster]

My hon. Friend is making some powerful points, as other speakers have. Investment in this area is vital. The costs of caring for those lifelong disabilities as well as preventing deaths are why the Government should invest in this area—invest to save money in the long run.

[Nicola Blackwood]

My hon. Friend makes a good point. This is not a subsidy; it is an investment that will reap a return.

Currently, there is no formal infrastructure to collect and share data about standard treatment guidelines. Consultants working incredibly hard to save the lives of young patients struggle with their inability quickly to access information about the potential adverse effects of very tough treatment regimes. In all my correspondence about this with NHS England and others, the response is, “We’re trying, but it’s very difficult.” That is not good enough because all life-saving cancer innovations are difficult and, given the stakes, I simply cannot accept that the problem is insoluble. The architecture for collecting the data is in place, but the lack of formal data collection requirements and a single responsible body can have devastating consequences.

Currently, the National Cancer Registration Service and Public Health England are developing a pilot to improve data gathering and I welcome that, but it seems that it will be retrospective. It may yield research benefits, but it falls short of the real-time data necessary to guide clinicians. When Skye’s consultant noted that he was deteriorating fast, she could not easily find out whether any other children on the Milan protocol had experienced the same side effects and she was reduced to phoning colleagues ad hoc to ask their opinion one by one as Skye got worse. In the end, it was too late.

In so many ways, we are making tremendous strides in the UK in tackling cancer, including childhood cancer, but the absence of monitoring the adverse effects of standard treatment for childhood cancer can lead to lifelong disability and death. In an ideal world, all childhood cancers would be the subject of a full clinical trial, but we must recognise the challenges associated with research into childhood cancers where cohorts of rarer cancers can be incredibly small and ethical issues are more complex, making it difficult to recruit participants. This means that even with increased funding, which is clearly essential, some childhood cancers will have to be treated through standard treatment protocols.

I hope the Minister—I believe he is a man of action—will listen to the arguments that all of us here have made today about funding concerns and take action to rectify data gathering and standard treatment protocols. If those adverse effects are properly collected, recorded and shared, we may be able to avoid more cases like Skye’s and to increase survival rates of childhood cancers even more.