The Parliamentary Under-Secretary of State for Health (Jane Ellison)
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 Sunday 11 January, NHS England announced a new independent cancer taskforce to develop a five-year action plan for cancer services that will improve survival rates and save thousands of lives.
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 qualify 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.