Child Cancer

Julie Cooper Excerpts

Monday 28th November 2016 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

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 the hon. Member for Bath (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 doubling 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.

[Wes Streeting]

Particularly for rare forms of cancer or brain tumours such as DIPG, it is important that clinical trials take place at scale. Does my hon. Friend agree that, after the UK leaves the European Union, the Government should seek to ensure that there is as much alignment as possible in the regulatory framework between here and the rest of the European Union so that clinical trials on the European level can continue to take place?

[Julie Cooper]

I am grateful to my hon. Friend for making that important point. 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.

--- Later in debate ---

[Nicola Blackwood]

There is also work being done on making sure the workforce are in place; and there is an overall strategy with Health Education England to do that. I am happy to write to the hon. Lady to give her details. I am slightly concerned that I have a lot to get through and I am going to bore everyone.

The taskforce has also recommended a new drive to deliver chemotherapy e-prescribing, which makes a significant difference to the experience of families who are supporting children being treated for cancer. Providers are working to implement plans for children by September 2017. Under the strategy, proposals will have been developed by March 2017 to improve the transition of young patients with cancer between children’s and adult services. As the hon. Member for Bristol West (Thangam Debbonaire) has said, transitions continue to pose a problem in some areas, with paediatric services stopping at 16 in some hospitals, but adult services not starting until 18. In addition, pathways between specialist centres and shared care units currently cause great difficulty for patients. The strategy says that there is a need to address that, and I hope that the hon. Lady will be reassured that work is being done on it.

An important recommendation of the strategy is that NHS England, the National Institute for Health Research and cancer research charities should work together to consider how to achieve a significant increase in access to clinical trials for teenagers and young adults with cancer—the shadow Minister, the hon. Member for Burnley (Julie Cooper) spoke about that. A far smaller proportion of teenaged and young adult patients than of younger children take part in clinical trials. There is obviously an opportunity that we need to grasp. The strategy recommends that we explore ways in which clinical trials for children and young adults with cancer could be significantly increased. As the shadow Minister said, NHS England should set an expectation that all centres should aim to recruit at least 50% of their patients for those trials by 2025. That is the target that we are reaching for.

Outside London, only four centres treat more than 100 children with cancer a year, across all types of cancer. The strategy recommends that NHS England, working through the children, teenagers and young adults clinical reference group, should consider whether outcomes could be improved through further reconfiguration of services, as the shadow Minister said. Any review should again be based on patient outcomes, including patient experience, as few centres offer comprehensive specialist services for children at the moment.

Many hon. Members have rightly called for research to be prioritised in that context. It is good that, since 2010-11, we have increased annual investment in cancer research through the National Institute for Health Research, including research into childhood cancers, from £101 million to £142 million. However, 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. Some 20 NHS and university partnerships across England have each been awarded funding through the NIHR, and we expect to see significant research activity in childhood cancers within that programme of investment.

The NIHR is also collaborating with three charities—Teenage Cancer Trust, Children with Cancer UK and CLIC Sargent—to identify gaps and unanswered questions in research into young peoples’ cancer and to then prioritise those gaps that patients and clinicians agree are the most important. The initial survey opened just last month, so we expect to see progress on that soon.

A new working group has brought together clinicians, charities and officials to discuss how we can increase the level and impact of research into brain tumours, including those in children. The group first met in October and the Government anticipate that it will complete its tasks by September. I will be co-chairing the next meeting in January with the Department of Health’s chief scientific adviser, Professor Chris Whitty, to make sure that we make the progress needed.

[Julie Cooper]

Does the Minister agree with the important comments made by brain tumour charities that EU funding is fundamental, and will she commit to ensuring that, should we not have access to EU research funding post-Brexit, the UK Government will make sure that that gap is filled?

[Nicola Blackwood]

The shadow Minister has made some important points about the EU, as have a number of colleagues, and I will come on to them before I finish. First, let me complete my remarks on the amount of funding that we have put into research, because it is important that it is seen as a package. Less than two weeks ago, the Government announced a further £112 million of funding to support the skilled personnel and cutting-edge facilities needed to help at the forefront of clinical research—experimental clinical research in particular, including research into child cancers. I visited one of those facilities myself, and they are an important aspect of the research we are supporting. The Chancellor announced £2 billion additional funding per year for research and development by 2020-21 in the autumn statement, including for scientific research at universities and businesses. That is another part of the picture.

The hon. Member for Birmingham, Selly Oak, who is not in his place, spoke of the importance of precision cancer medicines. The Government agree, which is why we have funded the 100,000 genomes project, to diagnose, treat and prevent rare disease and cancer, including childhood cancers. The Government have invested hundreds of millions of pounds in that project to date and it is already making a difference—the first children with rare diseases have received diagnoses through the project at Great Ormond Street Hospital. The project promises to offer a genuine step-change in diagnosis and precision treatment, which is encouraging.