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Skye was born on
Skye was operated on less than a week later and tissue analysis identified the tumour as a grade IV metastatic medulloblastoma, the most commonly occurring paediatric brain tumour. It is an aggressive form of primitive neuroectodermal tumour, which originates in the cerebellum, the part of the brain which controls movement and co-ordination. Although Skye’s tumour had been caught early, it had already metastasised throughout the brain and spinal cord. Surgery was quickly followed by what is known as the Milan protocol: four cycles of chemotherapy over 11 weeks, and a further five weeks of hyper-fractionated radiotherapy. After a four-week period of recovery, Skye had high-dose chemotherapy that confined him to hospital for seven and a half weeks.
He then had four weeks rest at home, and was due to head back to hospital on
It was initially diagnosed as radionecrosis, which had been brought on by the combination of therapies that he had had to endure. It was later confirmed as radio-chemo neurotoxicity. His parents were told that that was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan protocol was quickly withdrawn from use in the UK. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. Skye sadly died at home on
I did not meet Skye and I only met his parents some time after his death. They are in the Gallery tonight and have demonstrated to me the most extraordinary bravery in the face of losing their child in this most distressing of ways. They have set up Blue Skye Thinking, a charity that supports research so that all children diagnosed with brain tumours will have a better chance of survival and a better quality of life post-treatment. They continue to support many other parents whose children are suffering from cancer today.
I have taken some time to explain Skye’s story in detail this evening because it illustrates only too well some of the things that are working in childhood cancer treatment at the moment and some of the things that need improvement. The overall story of childhood cancer treatment over the past 30 years is a positive one. Eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s. Short-term survival is also high: fewer than 10% of children die within a year of diagnosis and only 2% die within 30 days.
I congratulate the Government on that. Ministers have demonstrated a clear commitment to fighting cancer and the work and money that has been put into the system to improve cancer survival rates are bearing fruit and proving that the money is being well spent. However, we should not allow these headline statistics, encouraging though they are, to blind us to the fact that, rare though childhood cancer is, it remains the leading cause of death in children and teenagers in the United Kingdom. Childhood cancers account for just 1% of cancer diagnoses in the UK. For research purposes that is a small cohort, but 700 children and young people are diagnosed with a brain tumour every year.
I thank the hon. Lady for bringing this matter to the House today, and for allowing me to intervene. Cancer Research UK has given me some figures today showing that 60 people are diagnosed with cancer each day in Northern Ireland. When Josh Martin, a young boy at secondary school, went into hospital to have his appendix removed, he was found to have progressive cancer. His family started the Pray for Josh campaign, which is being supported by his family and by the Churches. It has not only given great comfort to the family but helped to highlight the scourge of cancer and the fact that funding for drugs and help for families are very important. One of the organisations that can help is Macmillan Cancer Support. Does the hon. Lady agree that the support of such organisations can be important for families at times like these?
The hon. Gentleman is absolutely right to say that this is about not just Government funding but the way in which funds are given, and charities in particular play an important part. The fundraising that they do through individuals is vital.
As I was saying, 700 children and young people are diagnosed with a brain tumour every year, and that makes it the most common form of cancer affecting children and young people. It is also the most lethal. Brain tumours kill more children and young people than any other cancer—around 160 children a year—but despite being responsible for more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. That funding matters because children’s cancers are biologically very different from adult cancers and treating them effectively requires specifically tailored research and targeted treatment regimes. At the moment, only about 50% of childhood cancers are part of a clinical trial; the remainder are treated using standard treatment guidelines. As Sally and Andrew Hall discovered, that can have serious consequences.
Cancer treatment is harsh at the best of times, and recent studies show that while many survivors of children’s cancers go on to live healthy lives, others face long-term disability and reduced immunity. Radiotherapy, the gold standard in terms of its efficacy in treating cancer, can also have damaging long-term consequences for the developing child. This is particularly true of childhood brain tumour survivors, 60% of whom are left with a life-altering disability. In a few cases, the side effects can be so severe as to be fatal. That is what happened in Skye’s case.
The Milan protocol, under which Skye was treated, was a standard treatment guideline, because as with about 50% of other childhood cancers there is no clinical trial available. It has become clear that there is currently no formal infrastructure in place to collect, record and share data, particularly on adverse effects of treatment, about standard treatment guidelines. I understand that before 2008 the responsibility for collecting and sharing data for clinical trials and for standard treatments fell under the remit of the Children’s Cancer and Leukaemia Group. Subsequently, clinical trials monitoring was tightened, and the CCLG’s “Guide to Clinical Trials” states:
“Clinical trials are very closely monitored by a number of different individuals and organisations. This will include the Chief Investigator…the working group…and relevant staff within the clinical trials unit. An Independent Data Monitoring Committee may also be established to oversee the conduct of the trial. At a national level, there will be an ethics committee and the national regulatory body. If there are any concerns about the conduct of the trial or the results, a trial may be stopped early.”
By contrast, in a letter responding to my concerns about the issue, the National Cancer Intelligence Network, told me that
“all of us in the field accept that (adverse effects in Standard Treatments) is something that should, under ideal circumstances, be a part of the data that we routinely collect. Such data are, however very much more difficult to collect than might be imagined and adverse effects were never part of what the CCRG (Childhood Cancer Research Group) or the CCLG themselves collected outside of a clinical trial. There are no nationally agreed datasets relating to adverse effects and few clinicians systematically collect and collate data of this sort...but it is clearly something that we in the NCIN should be considering.”
I am grateful that the NCIN has recognized that these data should be collected and collated, but I do not think that considering doing it is a sufficiently robust or urgent response to the problem, given the gravity of the consequences if a standard treatment goes wrong.
Clearly, in an ideal world all childhood cancers would be the subject of a full clinical trial and new targeted therapies being developed to reduce the long-term risks, but all of us know the challenges associated with research into childhood cancers, where cohorts of rarer cancers can be incredibly small and the ethical issues are more complex, making recruiting participants more difficult. Obviously, I am going to urge the Government to do whatever they can to fund and encourage more research into childhood cancers. I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.
May I say that, as a cancer sufferer, I welcome my hon. Friend’s courage in bringing this debate? May I pay tribute and offer my sorrow to these parents? May I also say that our Front-Bench team need to take on board the problems? I have seen parents, week in, week out in Northampton general hospital, and I know the case she is making is a real and heartfelt one. I hope that we will get good words from the Minister.
I thank my hon. Friend for his intervention and his support. I wish to emphasise the need for investment in the HRA streamlining programme, because I believe it will have a significant impact on reducing the resource and time required to set up trials across multiple sites in the UK, and that can only be good for research into childhood cancers, as it will be for research into all cancers.
I particularly want to focus today on the complete absence of data collection, recording and sharing on standard treatments of childhood cancers in the UK. I am very disappointed that having written to the life sciences Minister about this issue in early December I have yet to receive a substantive response. This issue could not be more serious for the treatment and long-term outcomes of children with cancers, especially brain tumours. Consultants around the country who work with incredible dedication to save the lives of their young patients struggle with their inability to quickly access information about the potential adverse effects of very tough treatment regimes, and it is a problem that we must try to fix. The architecture for collecting the information—the NCIN and the CCRG—is in place, but the lack of a formal data collection requirement and of a single responsible body can have devastating consequences for families.
When Skye’s consultant noticed there was an unexpected problem with Skye—the severe white matter damage shown on the MRI scan—she immediately tried to see whether any other clinicians had experienced similar issues. This was important in order to ascertain what other symptoms to look out for, what other treatments could be tried and what other outcomes they had had. Despite the fact that we now know that other children had been suffering in a similar way and that different treatments had been tried, she could not easily obtain this information; it was a matter of phoning around individual colleagues in an ad-hoc way to ask them one by one, and all this took place while Skye deteriorated. Time in such situations is of the essence so this is an unacceptable situation and it cannot be allowed to continue. Had there been a system in place to monitor adverse effects, things might have been different.
In so many ways, we are making tremendous strides in tackling cancer in the UK, including childhood cancer, but the complete absence of monitoring for adverse effects of standard treatments of childhood cancers can lead to life-long disability and death. I hope the Minister will take this away and take urgent action to rectify the situation. I also hope she will arrange for myself and Sally and Andrew Hall to meet the appropriate representatives from her Department to address this issue, once and for all. If details of those adverse effects are properly collected, recorded and shared, we might be able to avoid those consequences in more cases, increase childhood cancer survival rates and improve the quality of life for survivors even more.
I apologise in advance for my cold and for possibly not bringing the healthiest of tones to the Dispatch Box tonight. I do not want that to detract from the excellent and typically sensitive way in which my hon. Friend raised this debate. I also commend Skye’s family for their work. They have shown enormous courage, as have so many other children and families who are affected by this terrible disease. Many of us, both constituency Members and Ministers, meet other such families and stand in awe of their courage in bringing these issues to the fore.
The work of the charity set up by Skye’s family, Blue Skye Thinking, highlights some of the key issues, including the importance of research into and the treatment of childhood brain tumours.
I will make a few general points, but I hope to speak to some of my hon. Friend’s specific asks as well. On those that I cannot respond to—as she knows this is a complex situation—I undertake to ensure that responses are provided.
Improving cancer outcomes, including for children, is a major priority of this Government, as Members who have been at recent debates on cancer will know. The annual report on our cancer outcomes strategy in December showed that we are on track to save a projected 12,000 more lives a year by 2015, which is more than double our ambition of 5,000 lives. As my hon. Friend said, the strategy is bearing fruit.
Further to that, we were delighted that, on
That taskforce has been set up to produce a new cross-system national cancer strategy to take us through the next five years to 2020, building on NHS England’s vision for improving outcomes set out in the five-year forward view. The taskforce is formed in partnership with the wider cancer community and other health system leaders and is chaired by Dr Harpal Kumar, chief executive officer of Cancer Research UK. It aims to cover the whole cancer pathway, from prevention to end-of-life care, including improving outcomes for children and young people with cancer. The taskforce will produce a statement of intent by March 2015 with the new five-year cancer strategy to be published in the summer. We did ascertain during a recent Back-Bench business debate on cancer that the taskforce had asked the leading all-party groups on cancer to submit evidence. That might be something that other parliamentarians wish to do.
My hon. Friend mentioned issues around diagnosis. In cancer debates, we always talk about the importance of tackling late diagnosis. To increase the awareness of a number of childhood cancers among GPs, the Department funded BMJ Learning in 2012 to provide an electronic tool for GPs through a two-part module on diagnosing osteosarcoma—a type of bone cancer—and brain tumours in children and young people.
That module helps GPs to understand osteosarcoma and types of brain tumour in children and young people and their common presentations, and to recognise when patients need that urgent referral. Those modules were developed with help and contributions from various charities including the Brain Tumour Charity, the Teenage Cancer Trust and CLIC Sargent.
As part of the recent taskforce announcement, NHS England also launched a major early diagnosis programme, working with Cancer Research UK and Macmillan Cancer Support to test new approaches to identifying cancer more quickly. They will be familiar to those who ask whether the system can do better. They include: offering patients the option to self-refer for diagnostic tests; lowering the threshold for GP referrals; creating a pathway for vague symptoms; and setting up multi-disciplinary diagnostic centres so that patients can have several tests done at the same place on the same day. For parents with children, that is a welcome development. We want to reduce the stress of multiple journeys into health care settings.
NHS England’s aim is to evaluate these innovative initiatives across more than 60 centres around England, collecting evidence with a view to implementation in 2016-17. My hon. Friend will also want to know that the National Institute for Health and Care Excellence is updating its current referral guidelines for suspected cancer, with a final version due in May to continue to help GPs to identify and refer patients promptly, including children and young people with symptoms that could be cancer.
Obviously, once diagnosed, it is critical that children and young people receive the most appropriate treatment. The NICE improving outcomes guidance for children and young people serves to assist the NHS trusts in planning, commissioning and organising services for children and young people with cancer. It recommends, among other things, that all care must be provided in age-appropriate facilities. NICE also published a quality standard for children and young people with cancer in February 2014.
Over the past four decades there have been major advances in the development of successful treatment strategies for childhood cancers, as my hon. Friend generously acknowledged. Much of that has been due to the use of standardised protocols in clinical trials and specialisation of care, as evidenced in the neuroblastoma trials run at Great Ormond Street children’s hospital, for example.
Although outcomes for children with brain tumours are often poor, medulloblastoma has an outcome of disease-free survival of around 80%, as my hon. Friend said. That is achieved through timely sequences of surgery, radiotherapy to the whole brain and spine—to mitigate the tendency for the tumour to spread to the central nervous system—and adjuvant chemotherapy. That treatment protocol is standard throughout Europe and America and has been developed and refined as a result of clinical trials carried out throughout the UK, Europe and America over recent decades.
It is obviously vital for children with cancer to have the most appropriate treatment, so it is very sad to hear that Skye’s treatment did not succeed. My hon. Friend referred to the Milan protocol. I can confirm that it was suspended by the Children’s Cancer and Leukaemia Group in May 2014 due to indications that in some instances, as in this tragic case, it resulted in neurotoxicity. NHS England has recently set up a children, teenagers and young adults group, reporting to the independent cancer taskforce, which will look to address those issues, particularly single-arm studies such as the Milan protocol, because although the way they are set up is innovative, they do not recruit high enough numbers to quality for a randomised control trial, as my hon. Friend mentioned. NHS England is currently drafting terms of reference for the group. I will certainly ensure that, in so doing, it is aware of this debate and of the concerns she has raised. The major children and young people cancer charities have agreed to participate, and the first meeting will take place in the near future.
My hon. Friend mentioned the routine collection of side effects data from single- arm trials. I understand—this was mentioned in the letters she received—that at present these data are not routinely collected, but obviously ideally they would be. I am advised that there are problems in being able to collect the data, although the National Cancer Intelligence Network is continually working to improve the range and quality of the data it collects and analyses. I hear her challenge to say, “That is not good enough”, because she wants it actually to happen, rather than just to be worked on. As she said, she was advised that adverse effects data were not originally part of what the Childhood Cancer Research Group or the Children’s Cancer and Leukaemia Group themselves collected outside a clinical trial. Of course, there is added complexity when considering the sharing of adverse reaction data on an international level, as I am sure Members appreciate.
I have asked my officials to discuss those issues with Public Health England and the National Cancer Intelligence Network to consider how those data might be collected, and I will ask to be updated on that work so that I can fully understand what the barriers might be. Clearly, without knowing exactly what those are it is very difficult to know whether they are essentially clinical, administrative or the result of something else. I know that it is important to my hon. Friend to understand that, so I will ask for that work to be undertaken.
I am also really sorry that my hon. Friend did not receive a substantive reply from my ministerial colleague, which was not good enough—there was clearly a mix-up on that front. As she said, Dr Michael Peake, the National Cancer Intelligence Network’s clinical lead, who wrote to her, is happy to meet her and Mr and Mrs Hall to discuss in detail how these issues might be addressed, which I hope will be of help. Clearly that would feed into the work that I have asked to be done to understand what the barriers to making progress are.
My hon. Friend spoke about the vital issue of research, so let me give her an update. Research is critical to improving outcomes. The Government and the charities work closely together on childhood cancer research through the National Cancer Research Institute. The national cancer research initiative’s children’s cancer and leukaemia clinical studies group interacts with clinical research networks, funders and researchers to develop studies aimed at improving outcomes.
The National Institute for Health Research clinical research network is currently recruiting patients to a study assessing quality of life in paediatric, teenage and young adult patients treated for medulloblastoma. A study looking at treatment for children with neuroblastoma has recently been approved for funding through the health innovation challenge fund, which is jointly supported by the Department and the Wellcome Trust.
In conclusion, I thank my hon. Friend for bringing this important and sensitive issue to the House tonight. I reiterate the respect and admiration in which we all hold the parents and families of children who have died in these tragic circumstances, and their intention to take from their personal and family tragedy the desire to do better for other people’s children and to try and ensure that we learn those lessons. That intention is shared by all hon. Members in all parts of the House and by the Government. I thank them, through my hon. Friend, for doing that.
The new independent cancer taskforce, in partnership with the cancer charities and health system leaders, is leading the way towards making a real difference. With the ground-breaking research that I mentioned, we can look forward to cancer outcomes that are among the best in the world, and in particular to improved cancer outcomes for those precious children.
Question put and agreed to.