On 29/11/16, history was made with childhood cancer brought for debate in parliament. This was brought about mainly as a result of two families in particular, whose posts on social media went viral in regards to their children passing away from childhood cancer – Poppy-Mai Barnard (who had a malignant rhabdoid tumour) and Jessica Whelan ( who had neuroblastoma). As a result, over 115,000 people signed the petition calling into greater awareness and more funds for research and treatment of children’s cancers.

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So what are the outcomes of the debate?

15 MP’s attended, including the chairman and the under-secretary of state for health, Nicola Blackwood. Unfortunately, the secretary of state for health was unable to attend (Jeremy Hunt). This made it 15 out of 650 Members of Parliament that attended. Sadly, a lot of empty seats.

For a list of the MP's that attended see here.

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The MP’s that attended did their constituents proud, speaking passionately about the issues that children and young people with cancer face and what needs to be done.

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Two of the MP’s had close links with childhood cancer through close family members and almost all of the remainder had been approached by constituents with childhood cancer stories and had become similarly passionate. Some excellent points were raised about the lack of funding spent specifically on children (compared to adults) and concern for delays in diagnosis.

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A big thank you to the MP’s that attended, and supported this vital work. They also praised the work that childhood cancer charities already do. Unfortunately the outcome of this debate was not as positive as the initial points may suggest.

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The final speaker was the under-secretary of state for health, Nicola Blackwood. She concluded and closed the debate with an explanation of  how the government are already investing a lot in research and will continue to do so a as a part of the NHS Five Year Forward Review plan which she feels will make big improvements for children. She stated that although a lot of the guideline was for adults, there was a lot covered in this plan for children too (see below).

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The sitting was then “agreed to Resolved,” and then adjourned.

 

In real terms, what does this mean for childhood cancer?

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Parliament have considered the petition, debated it (15 out of 650 MP’s) and the case has been closed with no change in the existing action plan. They will continue to work according to the preexisting NHS Five year cancer strategy.  

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The undersecretary of state advised MP’s that since 2010, they have increased cancer research funding for the National Institute for health Research from £101 million to £142 million a year. Children receive approximately 1.3% of cancer research funding, so we would estimate they receive about £1.85 million a year in government funding for research, the rest is from charity support.

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The undersecretary of state for health went on to say “we know that a lot more needs to be done if we are to deliver the changes that we want to see. That is why the Government announced the largest ever investment in health research in September— £816 million over five years from April 2017.”

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This sounds wonderful, but sadly in real terms it is rather concerning. The £816 million is the amount to be spent on research projects for all medical conditions, not just cancer. The priorities listed include dementia, mental illness and microbial resistance and many more. Cancer is mentioned in some grants awarded, but childhood cancer is not specifically mentioned at all. Some research of course may be done but how much is impossible to quantify from these statistics. Given however that children receive approximately 1.3% of cancer research funding, and cancer is only one of the conditions that is being funded her, the authors cannot foresee it would translate into a significant amount of funding.

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[https://www.gov.uk/government/news/new-816-million-investment-in-health-research - please see for the breakdown of grants awarded so far].

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We are awaiting a response having applied for data via a Freedom of Information request, but there is nothing to suggest that the proportion given to childhood cancer will change. We also predict there is a good chance response may be that the amount given to children is not quantifiable as it has been given to cancer research in general rather than to specific projects. This may not be the case, but we will keep you posted.

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During her speech, the under-secretary of state for health continually mentioned the NHS Five cancer strategy, of which childhood cancer is a part. Formally, yes childhood cancer is included, but on reading the 49 page document, there is little or no mention of improvement of early diagnosis in childhood or research into childhood cancers (with the exception of a mention of encouraging families to donate tumour tissue samples).

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In fact, children are rarely mentioned in the whole document. The main focus of the document is the aging population and the increased cancer needs that it faces. This is important, but so are our children.

Our worry and the worry of a number of other childhood cancer parents is that children are being overlooked. They do not have the same health needs as adults and should not be contained as an ‘add on’ in the same documents. Childhood cancer research needs a large increase in research funding, improved awareness and easier access to drugs trials.

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Sadly, the case has now been dismissed as discussed and agreed by parliament. They have made no recommendations that different measures should be introduced.  If we as the public wish the case of childhood cancer to be discussed further, then new petitions would be needed or it would need to be approached in a different way.

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A huge thank you to everyone that has signed the petition or brought it to parliament as it was the first hurdle to getting the voice of childhood cancer heard.

It is wonderful that the subject of childhood cancer reached a debate within the House of Commons, however, we as the authors believe this is unfortunately not the big step we hoped for. We need to keep fighting for our children.

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Please click here to see the transcript for the childhood cancer debate on 28.11.16

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