Childhood Cancers

Debate between Baroness Blackwood of North Oxford and Brian Binley

Wednesday 25th February 2015 Commons Chamber

[Nicola Blackwood]

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 recognised 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.

[Mr Brian Binley (Northampton South) (Con)]

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.

Energy Bill [Lords]

Debate between Baroness Blackwood of North Oxford and Brian Binley

Tuesday 10th May 2011 Commons Chamber

[Mr Binley]

I am sure that the whole House will welcome the Minister’s generous remarks, and I hope that we can set the stage for a consensual approach to this important matter. I was going to say something about limp lettuce leaves, but in view of my desire for that consensual approach, I shall refrain from doing so.

Mr Deputy Speaker—the change is slightly off-putting, but it is good to see you in the Chair—we all know that improvements in energy efficiency are a vital part of the wider picture of our energy policy, for a number of reasons. They are central to the success of our economy, and to the well-being of the environment that we want our children, grandchildren, and those who come even later to enjoy. They are extremely important to the jobs market. However, they are even more important to consumers, particularly those who are less privileged than many other people in the country. I believe that the Government are genuinely willing to ensure that the benefits of the Bill spread to the sections of the community that we know need help because they suffer from fuel poverty, and I believe that those people would be particularly grateful to the Government if we managed to pull this off.

The Bill provides a welcome opportunity for us to consider the wider question of the direction of energy policy, which chapter 4 of part 1 and chapters 1 and 2 of part 2 refer to in no uncertain terms. Issues such as future generation and supply, low carbon innovation and investment and energy security are vital to the overall picture, and I was pleased to learn that the Minister envisages a review and report in the coming years that will deal with those vital issues more widely.

I think we all agree that a low-carbon energy future offers the strong economic opportunities to which I have referred, but energy can be saved only if there is energy to save. The whole process of generation has become even more delicate and important as a result of happenings on the other side of the world, and the future of energy policy is now a very pertinent matter to which we need to devote serious attention. I do not think that either this or the last Government have embarked on that process to the extent that would satisfy me and, I believe, a number of other Members.

Low-carbon energy provides a tremendous opportunity for us to create new jobs, improve energy security and reduce fuel poverty, and making existing energy supply go further is a positive concept that we would all support. The green deal programme is one of most startling and innovative policies that I have seen during my time in the House. As I have said, there are ways in which we can improve it, but it is a gem of an idea on which we can build, and which will have a massive impact on the people whom we serve. I hope that the rest of the House sees the Bill in the same way. I know that the Builders Merchants Federation will be interested in it, but the federation is only one organisation that will be interested in the possibilities for job creation, let alone improvement of our housing stock and help for those who are less fortunate than many of us in this country.

I am delighted that there will be a focus on the sectors to which I have referred, and I am delighted that those sectors will help to provide the growth that we need to ensure the success of the whole Budget strategy. The Bill is at the heart of that Budget strategy, which is one of the wider considerations that we need to bear in mind in Committee and on Report. However, it poses some difficulties that I think worth identifying from the perspective of a friendly supporter. I find its tone more than a little prescriptive, and I feel that it could have been more flexible at this stage, not least because so much of the detail is yet to be supplied. I hope that my hon. Friend the Minister will take that point on board.

I believe that we should make the green deal more attractive to domestic and commercial energy consumers. In that context, I pay tribute to my hon. Friend the Member for Richmond Park (Zac Goldsmith). I agree that we need to use fiscal drivers such as council tax rebates and changes in stamp duty. Although the green deal is tremendously exciting, it must be sold carefully and honestly, and the marketing process must contain incentives to change the minds of the many people who may be suspicious about phrases such as “Everyone’s a winner”. Whenever I wanted extra money to spend at the local fairground where the guy cried out “Everyone’s a winner”, my grandmother warned me to be wary of catchpenny deals. I do not want that sort of marketing to be part of this process; the deal must be marketed in a sensible, mature and honest way.

[Nicola Blackwood]

When deciding on a marketing strategy, should we not think about how to attract those who are most vulnerable, most likely to be subject to fuel poverty and, in general, least likely to access the support available to them?

[Mr Binley]

That is an important point, and I note from one or two nods from Opposition Members that there is agreement on it across the House. If we are to attract those who are at the bottom of the poverty chain, our marketing must be subtle. It worries me that the House often does not think about the management of the projects suggested by the Executive. We have seen that in the context of support for small business, and I should hate the same thing to happen to an idea as good as the green deal.

My time is quickly coming to an end. Before it does, let me say a little more about the need to reduce our carbon need. That is particularly relevant to what has happened on the other side of the world, which has changed the way in which some countries think about the production of energy. I therefore want to refer briefly to the vital role carbon capture and storage will play in ensuring we have the energy supply that we need in order to be able to save energy. The Government claim to recognise its importance, yet the levels of uncertainty that have beset progress of late are concerning. I welcome the Minister’s recognition that CCS is the only home-grown energy source technology that can help to reduce significantly CO₂ emissions from fossil fuel power stations—indeed, by as much as 90%. I also recognise that the Bill as it stands does not deal with this issue, but there are serious discussions going on about the future supply of power in this country. Doubt has been created as a result of the Government giving £1 billion for the first test model of a CCS facility but then saying we are doing away with the remaining £9 billion and we are going to deal with this from a general tax perspective. That has worried the marketplace and could hold back CCS development. I urge my Front-Bench colleagues to take this on board. There are 300 years of energy requirement under our feet and we have an opportunity to help coal communities. If we do not make progress with CCS, others will and we will miss massive opportunities.