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Julie Raises Concerns Over Future Childhood Cancer Drug Funding Post Brexit

30 Nov , 2016  

This week in Westminster Hall, I joined together with other members of the House to call for more funding to be made available to tackle childhood cancers. I also raised my deep concern that Britain leaving the European Union will have a knock on effect on current levels of cancer drug funding particularly those drugs that are currently used to fight childhood cancer. In my speech I said the following:

“It is an honour to serve under your chairmanship, Mr Davies. This debate has arisen in response to a petition signed by more than 115,000 people, including 922 from my constituency, following the sad passing of Poppy-Mai, the little daughter of Mr and Mrs Barnard. First and foremost, my thoughts are with that Lancashire family and all the other families who have endured a similar devastating loss of their children. There can be nothing worse than the loss of a child, so this debate is especially important.

It is important that we increase awareness of the scale of the problem facing children and young people who have cancer and their families, and look for ways to tackle the problems. How can we improve diagnosis? How can we improve research? How can we ensure better access to treatments? Ultimately, how can we improve survival rates? The debate, outlined so well by Ben Howlett, has given us the chance to search for answers to those important questions.

In the UK every year about 4,000 children and young people under the age of 25 are diagnosed with cancer. Worryingly, research by CLIC Sargent published last year found that 44% of young people and 42% of parents felt that their local GP did not take them seriously when they presented with symptoms, and 53% of young people felt that their diagnosis had been delayed. Clearly that is not an acceptable state of affairs. Inevitably, delayed diagnoses mean delayed treatment, with implications for survival rates.

In an attempt to improve awareness among GPs, CLIC Sargent embarked on a joint project to develop an e-learning module specifically focused on cancers in children and young people. That welcome work will go some way in helping to improve diagnosis and primary care support for children and young people with cancer, but far more needs to be done. It is a fact that children in the UK with a brain tumour can take up to three times longer to be diagnosed than children in other countries, most notably the United States. Reducing the time to achieve an accurate diagnosis improves survival rates and can reduce long-term disability, which many children and young people diagnosed with a brain tumour currently experience. I hope the Minister can give us some understanding of what the Government intend to do to improve diagnosis times.

Recent figures published by Cancer Research UK demonstrate that in the past 20 years we have seen a 32% reduction in the child cancer death rate. We have also seen five-year-survival rates increase from 40% in the early 1970s to 82% today. It is widely believed that those improvements have arisen as a result of more research and better treatments. While they are extremely welcome, they go nowhere near far enough, because the fact remains that cancer is still the leading cause of death among children. Five children and young people die of cancer in Britain every week, and those who survive often go on to suffer long-term side effects from their treatment that can continue into adulthood.

A considerable amount of research is carried out each year in the UK by a multitude of organisations including Cancer Research UK, the Brain Tumour Charity, the Institute of Cancer Research, the Institute for Child Health, Great Ormond Street Hospital and the Teenage Cancer Trust. Last year, Cancer Research UK committed to double research spending on children’s cancers. That will go some way in helping to discover new treatments. We all thank it and welcome that commitment, because currently only 3% of UK funding into cancer goes to child cancers.

It is important to remind the Government that many of those organisations are charities, which have relied on high levels of funding from the European Research Council. The Brain Tumour Charity stated that the result of the referendum on EU membership has created great uncertainty for charities conducting research into childhood cancers. Post-Brexit, the Government must ensure that the UK medical research community continues to have access to EU funding programmes once Horizon 2020 has ended. Similarly, I seek reassurance from the Minister that any shortfall in research funding as a result of our exit from the EU will be met by the UK Government. If we are to improve outcomes for children with cancer, it is paramount that we have research conducted to understand further these awful diseases.

Following improvements to diagnosis processes and research, we must ensure efficient access to treatment. Children and young people with cancer face a range of barriers in accessing new and better treatments, including drugs not being tested in their age group or in the cancers they are likely to get, even when a drug may be effective in treating their cancer. Simply challenging the age restrictions set on new trials is already increasing participation rates. That should be done in tandem with the provision of age-appropriate information about trials delivered by skilled, specialist staff.

Currently, the cancer patient experience survey does not collect data on cancer patients under the age of 16, and we have seen a 40% decline in response rates from teenagers over the age of 16 and young adults in the past five years. It is unacceptable that little or no progress has been made on this issue. Understanding patient experiences is important to improve future services. The cancer strategy includes plans to deliver a methodology to collect under-16s’ experiences, and NHS England is doing that alongside CLIC Sargent. Will the Minister helpfully update us on that work and tell us when we can hope to see the data being collected?

Achieving viable numbers for clinical trials on child cancers is understandably problematic given the relatively small numbers and rarity of some child cancers. However, we cannot allow that to be used as an excuse for not improving treatments for children and young people with cancer; instead, it should push us to innovate. Cancer Research UK has led the way in challenging the age restrictions on clinical trials, calling for more flexibility when it comes to age and ensuring that researchers justify age restrictions so that they rethink approaches to include children and young people.

It is essential that the UK’s exit from the EU does not negatively impact on further research. We must benefit collectively from work done in other countries. To pick up on the point other Members made, we must pool good practice and ensure that our good practice and successful research are shared throughout the world and that we benefit similarly from experience elsewhere.

In the cancer strategy, there were specific recommendations relating to children, teenagers and young adults’ services and how they can be improved. I was concerned, though, that in September the Government made an announcement on wider measures in the strategy but failed to mention anything about the important issue of seeking consent from children and young people for their data and tissue collection to be used in future research studies and the development of services, nor did they include a requirement significantly to increase access to clinical trials for teenagers and young adults with cancer.

Currently 30% of teenagers and 14% of young people aged 20 to 24 enter trials for common cancer types in children and young people. In 30 years there has been no progress in that area. The cancer strategy set a target for NHS England to recruit at least 50% of children and young people in cancer centres or designated units treating teenagers or young adults. That is welcome, but will the Minister give us a progress report and tell us how long it will be before the target is likely to be met?

I pay tribute to the Barnards, to the other families mentioned today and to the children and families across the UK affected by cancer for their courage in the face of this most awful of illnesses. I ask the Government to understand those families’ need for support. We have heard some moving stories today. They need support in a wide sense—from specialist units and through better access to information. Importantly, they also need financial support. Several hon. Members have powerfully made the point today that the costs of cancer are physical and emotional but also financial. We must do more and better.

I want to hear what specific plans the Government have to improve the speed of diagnosis; I want a guarantee that the Minister will protect research funding post-Brexit; and I want to know what plans she has to increase the number of clinical trials, to ensure that access to life-saving treatments is the best possible. Children and young people deserve no less.”

You can see my speech at (please copy and paste the link): http://parliamentlive.tv/event/index/eac0e840-b934-48c7-87d3-41432f643ae5?in=17:39:54&out=17:50:42

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