Paediatric Cancers of the Central Nervous System

Caroline Johnson Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I thank my hon. Friend for her, as ever, courteous and heartfelt intervention. I know of the trauma she is facing in her family life. Richard and Lorraine are extraordinary people, as are their wider family. I have been impressed by their courage throughout Cian’s illness and, now, his passing.

We must not forget those who are lucky enough to survive such aggressive forms of cancer. Survivors often face a lifetime of other health complications, including mobility issues, cognitive challenges, infertility, growth complications and other conditions that require a high level of medical support. We must ensure that aftercare for those children is world class, and that they are able to lead as full, happy and long a life as possible.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I congratulate the hon. Gentleman on securing this Adjournment debate to raise awareness of an important health condition. He described how the tumour affecting his constituent was in the cerebellum and is now discussing the long-term effects for survivors of childhood brain tumours. Both treatment and recovery are determined to some degree by the location of the tumour, which can vary widely. I remember clearly a young patient who had a tumour so close to her brainstem—the part of the brain that controls breathing, which we do not think consciously about—that she had to live in intensive care for many months during her treatment, because at any point she could stop breathing. I remember sitting with her when she was making a cotton wool collage of a winter scene and she simply stopped breathing. When she was awake, one could say, “Breathe,” and she would make a conscious effort to breathe; if she was asleep or distracted, or no one was paying attention, she would have passed away. She needed that constant reminder. That is why it is important to ensure not only that we have research and medical treatment during illness, but that for recovery there is a multi-disciplinary team—physios, speech therapists, occupational therapists and so on—so that children who survive these awful tumours make the fullest possible recovery and can live the fullest possible lives afterward.

[Chris Elmore]

I agree with the hon. Lady entirely. There is clearly a need to look not just at treatment but at what comes next. If we are to improve survival rates, which we must—research is a key part of that—then we need to look at what comes next for these families and for the children who, touch wood, will survive.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

I, too, wish we were not here, but let me congratulate my friend the hon. Member for Ogmore (Chris Elmore) on securing this evening’s debate. I commend him on his support and the incredible tribute he gave to Cian and Cian’s family this evening, and on the way he has handled the debate. For those who know him, in both the Government and the Opposition, it is rather typical of the man.

From what we have heard this evening, it is clear that Cian was a very special little boy who touched many people in his short life. I have seen his “Cian’s Kicking Cancer” campaign online, including the picture of him with his hands out in front of the No. 10 Downing Street door—it is a lovely photo—and I pay tribute to the determination of Cian’s parents to raise awareness of paediatric cancers. The way that they have been supported by their local MP is brilliant.

As the cancer Minister, I all too often hear of the devastation that this terrible disease can bring to people and their families, but nothing is as heartbreaking as when a child is affected. I said last week in the breast cancer debate that a life lived long or a life lived short is still a life lived, and I passionately believe that a life lived, short or long, still leaves an indelible mark on this world and still changes this world forever, even in a small way. From what the hon. Gentleman has told the House this evening, there is no question but that Cian has left his mark and changed the world a little bit. We will do our best to honour that and see whether we can change it a bit more.

Every day, at least 12 children and young people are told that they have cancer. When they are born—I have children myself—we all imagine bright futures for our children and the things that we want them to do, but cancer robs many children of that future and the opportunity to fulfil their potential. As the hon. Gentleman said, it is relatively rare in young children, but that is absolutely no consolation to the parents of a child with cancer. It can even be worse to know that and inevitably leads to questions such as, “Why me? Why my child? They haven’t made any lifestyle choices.” Cancer is indiscriminately cruel, and that is one of those awful truths that we face in life.

It is great that we have so much time for this debate. I know that there has been a bit of knockabout that the business finished early again this evening, but I genuinely believe that there is a reason why that happened, and we are going to make the most of it. I start by reassuring the House and those watching that cancer absolutely is a priority for me—I think most people know that—and for this Government.

I happened to be in the Tea Room before coming into this debate and the Prime Minister popped in after her marathon stint on her statement this afternoon. She asked me what I was working on and I said that I was doing this debate tonight. We spoke about how remarkable the way in which the House comes together in these debates is and how there is a concentrated audience for such debates. I know that the hon. Gentleman has put out on social media networks, as I am sure many others have, the fact that this debate is happening tonight, and I know, many people will be watching, so let us be clear: fighting cancer is absolutely central, as the Prime Minister said in her conference speech, to our long-term plan for the national health service in England—I have to say “in England”, because I am an English Health Minister, and the English cancer Minister. It will build on the progress already achieved in the cancer strategy and will set out how we will achieve our ambition that some 55,000 more people in England will survive cancer for five years each year from 2028.

I am absolutely committed to ensuring that our plan transforms outcomes for children with cancer over the next 10 years. The fantastic work being done by NHS cancer doctors and nurses, as well as the invaluable support that we get from our incredible cancer community, is helping us to achieve our vision of transforming cancer services for children and young people.

As I have said, childhood cancers are mercifully rare, but 1,600 children under 15 are still diagnosed each year in the UK. Central nervous system cancers are estimated to account for 25%, with 400 children diagnosed each year. Brain cancers alone account for more than 100 CNS cancers, making each cancer extremely rare.

It is true that survival for children’s cancer has gone up over the past decade, with five-year survival for children’s CNS cancers at 75%—that is how we measure it, but, of course, if people develop a cancer in their 70s, a five-year survival rate is a more significant achievement than for those who develop a cancer when they are under five. The survival rates have gone up, but there is not an ounce of complacency in me; we will and must keep working hard to go further and faster.

Treatment of CNS cancers varies depending on several factors—age, the tumour growth rate and the location and size of the tumour—but, as the hon. Gentleman said, it will usually involve a combination of surgery, chemotherapy and radiotherapy, depending on the clinical need. To ensure that patients have access to the latest, most cutting-edge technology wherever they live, we have invested heavily—some £130 million—to modernise NHS radiotherapy equipment. Over the past two years, 73 trusts have had their older linear accelerators, as they are known, upgraded or replaced, and that is an important thing that we have done—[Interruption.] Cheltenham is one of them, says my Parliamentary Private Secretary, my hon. Friend the Member for Cheltenham (Alex Chalk)—who says that PPSs do not speak in the House? He sits there diligently day in, day out, so why not?

The hon. Member for Ogmore mentioned proton beam therapy and I want to touch on that. In the past few years, there has been an increase in the use of PBT—for those who do not know, it is an advanced form of radiotherapy—for treating children with CNS tumours. It uses high-energy proton beams to treat the cancer much more precisely. These targeted doses of treatment have less impact on surrounding healthy tissue and fewer side-effects. In childhood cancers, that is critically important—the hon. Gentleman mentioned side-effects of treatment with regard to fertility, for instance.

Until now, PBT for children has been commissioned from overseas. We have sent children to America and to Germany. That is why we have invested £250 million to provide PBT services in England. I am delighted that the first NHS centre, at the Christie in Manchester, is scheduled to begin treating patients this autumn. A second facility is due to open at University College London Hospitals in London in 2020. I had the pleasure of visiting the Christie shortly after delivery of the giant ProBeam proton system, which is a significant engineering feat. The scale and complexity of the technology is truly breath-taking, and I am tremendously excited that we will shortly be providing PBT on the NHS in England, sparing patients the upheaval, discomfort and cost—I will come on to that—of travelling abroad for treatment.

Although survival rates for CNS cancers have been improving, some children will unfortunately suffer relapse, as we heard in Cian’s case, and treatment options can sadly be limited, even for palliative care. That is why NHS England is reviewing whether additional radiotherapy treatments, such as stereotactic radiosurgery and stereotactic radiotherapy—there is a difference—would be suitable for these patients. I am following that work closely, as I am interested in and excited by its potential.

This month, NHS England published the draft national genomic test directory for cancer, setting out how whole-genome sequencing for paediatric brain tumours and other genetic tests are now being considered for CNS cancers. I hope that introducing those tests will support better tumour identification and more targeted treatments for CNS cancers in children, and give hope to many others.

Perhaps the most exciting development in our efforts to treat childhood cancers successfully is the increasing availability of personalised treatments such as CAR-T therapy, about which there is understandably a lot of excitement in the medical community. With the introduction of more personalised and targeted treatments and different treatment options for children with CNS cancers, NHS England is reviewing how best to ensure that children receive the available treatment and from the relevant clinical team, now and in the future. We expect the availability of more personalised treatments to be a real game-changer for childhood cancers. The work is still in its early stages, and it will involve clinicians, service providers and charities as it progresses, but I will of course update the all-party group, which I will come to in a moment, as it develops.

Research, which the hon. Gentleman mentioned, is a crucial part of the fight against brain tumours. In May, we announced £40 million over five years for brain tumour research through the National Institute for Health Research, as part of the late Tessa Jowell’s brain cancer mission, which includes research for children with brain cancer. I only met Baroness Jowell once, unfortunately, but I was left in no doubt about what she wanted me to do—her legendary determination was very much in evidence. I very much enjoyed meeting her and Jess, her daughter, who is carrying on much of the work.

The hon. Gentleman talked about research projects. Baroness Jowell’s mission is about stimulating quality research projects—a point that the late baroness was able to nail as soon as she started to look into it. Although the NIHR spent £137 million on cancer research in 2016-17—the largest ever investment in a disease area—it does not allocate funding for specific disease areas. It does not have a basket for each disease area. Spending has to be driven, therefore, by scientific potential and the number and scale of quality funding applications.

The baroness was very pithy and understood immediately that we needed to stimulate the market in brain tumour research to enable quality research proposals to come forward. After that, the clinical research network, which is recruiting for or setting up more than 700 cancer trials and studies, including studies into childhood cancers and brain tumours, can press forward and do its work. Funding for paediatric cancer research is critical.

The hon. Gentleman also talked about international research. I absolutely agree that international collaboration is key for successful research on rare diseases such as CNS and childhood cancers. The Prime Minister has made it very clear that we want to work closely with Europe in science and research and that the UK is committed to establishing a far-reaching science and innovation pact with the EU, facilitating the exchange of ideas and researchers and enabling the UK to continue to participate in key programmes alongside our EU partners. Whatever “take back control” meant—one day I will be told—it did not mean that we are not to work with our EU partners in such areas. I am determined that it will not mean that, as are the Government. The Chancellor has also made it clear that he will guarantee EU structural and investment funding and underwrite payments for competitive EU research awards through the Horizon 2020 underwrite guarantee, which is a very important project.

The hon. Gentleman mentioned the Eliminate Cancer Initiative, which the late Baroness Jowell made sure I was acutely aware of. Its tagline “Making cancer non-lethal for the next generation” is really neat, and we certainly support it. It has huge global potential and reach. As he mentioned, given my international health brief, I travel to talk to Ministers from around the world. I was at the G20 earlier this month. The G20 and G7 have Health Minister meetings, as they should do; I certainly hope they will when we have the chair. I would like to see international research collaboration, specifically on cancer, on one of the G20 or G7 agendas. The hon. Gentleman’s point was well made. I will take it up with my officials so that, as we lobby for the chair of the next meetings, we talk about that. It would be an interesting piece of work that we as fellow Ministers could do. I know that people think that sometimes these international meetings are talking shops, and of course there is an element of that, but actually an awful lot of good stuff goes on and an awful lot of other agencies—the OECD, the World Bank, the EU—are part of those meetings. If Ministers decide that this is part of our agenda, that will make a difference and move the dial.

Several Members have talked about awareness of childhood cancers and I thank the hon. Gentleman for what he said about the all-party group on children, teenagers, and young adults with cancer. I am pleased to see my friend the hon. Member for Bristol West (Thangam Debbonaire) in her place. I welcome the establishment of that all-party group on the specific needs of children and young people with cancer. It is an excellent all-party group—several of its members are or were here. I was delighted to give evidence to its patient experience inquiry earlier this year. She had some of her patient advocates there, who asked great questions as well, and I commend it for an excellent report. I do not have to do this for all-party groups—I do for Select Committees—but I have undertaken that the Department will respond line by line to its report. I will definitely do that. It is not ready yet, but it will happen.

One of the all-party group’s recommendations was on signs and symptoms, which I will come on to, and another was on the cost of travel. The hon. Member for Alyn and Deeside (Mark Tami) mentioned the CLIC Sargent report that highlighted the financial impact of travel on the families of young cancer patients. It is a really good piece of work. I assure hon. Members that the Government are working to review the service specifications for children and young people with cancer. This will help us to consider how some aspects of the patients pathway might be provided more locally to reduce the travel burden for patients and their families. There is the other element: sometimes that cannot be done and people have to travel for treatment. The NHS cannot do everything brilliantly everywhere—clearly, specialisms are sometimes needed. That is why we have the healthcare travel costs scheme, which is part of the NHS low income scheme. It allows for patients’ travel costs to be reimbursed if they are in receipt of a qualifying benefit or are on a low income. The scheme helped some 337,000 applicants to receive financial help with their NHS treatment. I am very interested in the recommendations of the all-party group on that and I assure its members that I am taking great note of them.

[Dr Caroline Johnson]

I am pleased to learn that my hon. Friend takes such an interest in reports from all-party parliamentary groups. Will he undertake to look equally carefully at the report that will be produced tomorrow by the all-party parliamentary group for children who need palliative care, known as Together for Short Lives, which I co-chair with the hon. Member for Newcastle upon Tyne North (Catherine McKinnell)? It looks at how we provide palliative care for children with cancer and other life-limiting and life-threatening conditions.

[Steve Brine]

I will now take an intervention from the hon. Member for Ilford North (Wes Streeting).