Brain Tumours

Kevin Foster Excerpts

Monday 18th April 2016 Westminster Hall

[Wendy Morton (Aldridge-Brownhills) (Con)]

It is a pleasure to serve under your chairmanship this afternoon, Ms Buck. Along with others, I congratulate the hon. Member for Warrington North (Helen Jones) on introducing this debate. Maria Lester should also be congratulated on raising this issue; I do not wish to state the obvious, but without her petition there would have been no debate here today, so we would not have had the opportunity to share many personal stories and to raise this important issue with the Minister. It has also been an opportunity for me personally to learn more about this subject. As a newer Member of Parliament, I am still struck by how often constituents come to us and share their very personal experiences and stories with us; it is often very moving and very touching.

An earlier speech touched on people’s ignorance of this subject matter. In doing research for today’s debate and in sitting here listening, I, for one, have learned an awful lot—and I am sure I have an awful lot more to learn. As we heard today, the Petitions Committee released its report on funding for research in March. That report called for more investment in research into brain tumours and revealed the distress of many sufferers and their families whose lives have been devastatingly affected. It also helpfully explored the reasons behind the historical underfunding of research under successive Governments. I was quite shocked to read that brain tumours are the ninth most common cancer in the UK and they kill more children and adults under 40 than any other cancer—yet, while the incidence is increasing, there has been little extra allocated to research. That is one reason today’s debate is so important.

[Kevin Foster (Torbay) (Con)]

My hon. Friend makes powerful points. While I congratulate my constituent, Peter Jordan, on his efforts—he recently completed the Plymouth half marathon to raise funds for this cause—does she agree that, given the figures she has mentioned, what we need to see is real commitment from the Government to funding research?

[Wendy Morton]

I am grateful to my hon. Friend for his intervention. Yes, I do hope that the Government are listening today. We must continue to raise this matter. As a local MP, I recently read a heartbreaking email from a grandmother about her grandson. I then received an email from a mother, telling me about her son. At that point, it hit home that the grandmother’s grandson was the mother’s son. It highlighted to me that it is not just sons, daughters or grandchildren who are affected, but cousins, aunts, friends and colleagues; it extends way beyond the immediate family. Those emails compelled me to come along today and speak in this debate. The young boy sadly passed away, aged just 14, after surgery, chemo and radiotherapy, seven years after being diagnosed with a high-grade tumour. I cannot imagine how that family must have felt. Sadly, as we have heard from the many examples shared with us today, that family is not alone.

Charities, clinicians and scientists do amazing work. My hon. Friend the Member for Torbay (Kevin Foster) spoke about people who raise money through charities, doing sponsored runs, marathons and all manner of things for causes that are very close to their hearts. Yet, although technological advances help, brain tumours remain very difficult to treat and continue to take many, many lives each year—too many lives. I conclude simply by saying that I am looking forward to the Minister’s response, especially on how to raise awareness, how to improve research and, ultimately, how to improve the outcome for patients and their families.

--- Later in debate ---

[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.