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Diffuse Intrinsic Pontine Glioma

Volume 631: debated on Tuesday 14 November 2017

Motion made, and Question proposed, That this House do now adjourn.—(Andrew Stephenson.)

I thank Mr Speaker for granting me this important Adjournment debate on diffuse intrinsic pontine glioma, a rare form of childhood brain tumour.

I applied for this debate to raise awareness of DIPG, to highlight the need for more research and development, to try to get better treatments and to bring to this Parliament the heroic story of seven-year-old Luke Stewart, his mum, Jennifer Ure Stewart, his dad, Mark and his grandfather, Robert Ure. DIPG is an aggressive form of tumour on the brain stem. Fewer than 40 children a year in the UK develop them, but they account for 10% to 15% of all brain tumours in children. In October 2017, it has been reported officially that 38 children died of DIPG, and there is no cure.

Although rare, DIPG is actually the second most common type of primary, high-grade brain tumour in children. It originates in the area of the brain stem called the pons, the area of the brain that is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure. Not all cases of DIPG are identical, and it can affect each child differently, including through pressure on the cranial nerve, long tract or cerebellum. Childhood brain tumours are classified according to the type of cells—whether they are diffuse or focal—and the grade of aggressiveness. These particular tumours are high-grade, aggressive and relentless, growing extremely quickly, often spreading throughout the brain stem and into the spinal cord. Sadly, this means that they are very dangerous, difficult to treat and have a poor prognosis. Although it is not yet known what causes DIPG tumours, there is currently ongoing research aimed at discovering their genetic causes, which could help early detection and the development of future treatments.

I congratulate the hon. Gentleman on bringing this important issue to the House at such a late hour. DIPG is one of those diseases for which there is no treatment, no cure and no survival rate, but if we are to find a way forward, we need research and development. I hope that the Minister will respond positively to the hon. Gentleman’s request. Does he feel now is the time for that research and development to take place?

I thank the hon. Gentleman for his intervention. I shall come on to the subject of research and development. I have been in the House for seven years, and I live in hope of receiving a positive response from the Treasury Bench. Perhaps tonight we will get that far; indeed, I am sure that we will.

I welcome the research that is being done, but the current lack of sufficient research, available information, awareness of the condition and effective treatments can make DIPG all the more distressing for those diagnosed with it, as well as their extended families.

When it comes to treating the tumours, patients are usually offered courses of radiotherapy over three to six weeks. Because of the dangers of operating on such a critical area of the brain, surgery for some is simply not an option. In the UK, various studies show that chemotherapy is ineffective in treating childhood DIPG, although it is used in innovative ways in other countries, such as Mexico. I shall say more about that shortly.

Because the treatment options are extremely limited, the prognosis for children diagnosed with DIPG is poor. Although each child’s condition is unique, 70% of children with DIPG are not likely to survive for more than a year after diagnosis, and 90% do not survive for two years. The lack of knowledge of the condition means that children and their families are living from day to day. Greater investment in research on the condition might bring us one step closer to finding out more about the specific genes and molecules involved in DIPG tumour formation. That vital research could go on to create innovative new treatments, meaning that 40 more children each year—those who are struck down by the disease—could go on to become the doctors, scientists and even politicians of the future. It is important that we give those children the opportunities that they deserve, and give their families the hope that they need.

The famous astronaut Neil Armstrong’s daughter Karen died of DIPG 40 years ago at the age of just two, yet to date there have been very few advances in the treatment offered, which is devastating for parents. One such story is that of Luke Stewart. Luke is a seven-year-old boy who is happy, healthy, active, kind and caring. He comes from a loving family—mum, dad and two little brothers: Lewis, who is five, and Lochlin, who is just one. In January this year, their world was blown apart when Luke was diagnosed with DIPG. Doctors advised Luke’s mum and dad that he could survive for six to nine months if he received radiation treatment, the only option offered by the NHS in the UK. I cannot imagine what that kind of news does to a parent.

The family were informed that radiation treatment would prolong Luke’s life by only a few months, and that, although it would make him more comfortable, he would not survive. They were advised by the NHS that there were no other treatments available worldwide, or any clinical trials, that could help their son, and that on completion of the radiation treatment he would receive only palliative care. They were broken by that news, but they knew that they had to keep fighting for Luke, so they began to search for hope elsewhere. That was the start of their incredible journey to Mexico to save their son’s life. The journey to Monterrey began when, during a visit to the Chelsea football club training ground, they met a family from London whose daughter had the same condition. They had known of each other from Facebook conversations, but were totally unaware that both families would be at the venue at the same time. The London family were leaving for Mexico within days so that their daughter could receive a new, ground-breaking treatment.

That gave the Stewart family renewed hope. They researched the entire programme, which is called intra-arterial chemotherapy. Catheters are placed in the basilar and femolar arteries, and systematically deliver drugs approved by the Food and Drug Administration into the brain stem. The treatment has also been combined with intrinsic and T-cell immunotherapy. The Stewart family left for Mexico at the beginning of May, when they witnessed Luke’s condition deteriorating rapidly. This was the only hope that they had to offer him at that time: it was their last hope. Not only were they in emotional turmoil, having to deal with such a devastating situation, but they had to fundraise continually to secure money for the treatment.

The London family to whom my hon. Friend referred are constituents of mine, the Lau family. No one can imagine what a family goes through following a diagnosis of this kind, but I have been struck by how much more pressure is placed on families who are willing to move heaven and earth—and literally move across the earth—to ensure that their children have access to treatment that could potentially extend their lives, but at considerable cost. Does my hon. Friend agree that the Government should look urgently at what can be done to make sure that no families who can have access to treatment are prevented to do so by financial barriers?

Absolutely, and that is one of my key asks of the Government. Indeed, when a family are put in a situation where they are about to lose their child, they only have the hope of trying anything they can find, and many families, including my hon. Friend’s constituents, have made the journey to Mexico.

When Luke arrived in Mexico with his family, it made him the seventh child worldwide to receive this ground-breaking treatment; he was also the second child from the UK. The website is where people can see more about this condition and its history.

Luke’s clinical condition on his arrival in Mexico was extremely serious. This once active, confident and independent little boy could not walk properly, was constantly falling over, and was always tired, and his previously happy demeanour had changed completely. During this period, he regularly talked to his parents about dying—no words a parent should hear from their child.

The family spent four months in Mexico. During this time Luke received six IA treatments and four immunotherapy treatments. The costs associated with these treatments and all living and travelling expenses were self-funded by the family as the result of the generosity and financial support they received through their page.

During this period, Luke’s clinical condition improved dramatically; he was outgoing, happy, walking without any risk of falling over, running, playing with his brothers, communicating normally with his family, and making no further mention to his parents about dying. In the time that Luke had been receiving his treatment, his tumour had shrunk, the cancer activity was lower, his new cell generation was high, and his cyst had shrunk and become pure fluid. His clinical improvement means that he can live life as a seven-year-old in the knowledge that he is 11 months past diagnosis, a point at which the NHS said he would not survive. As if it was a miracle, he is now back at school. It is too soon to tell, but Luke’s improvement is an enormous step in the right direction. Cancer treatments are by their very nature evolutionary, so do we not need to embrace this treatment instead of ignoring it? Luke’s parents had no hope—their son would die. They had to at least try. Luke and his mum, and often his grandad, Robert, now require to go back to Mexico every five weeks for a period of five days to ensure that he continues to receive these ground-breaking treatments.

Before and after each treatment, Luke gives a sporty thumbs-up to tell the world on Twitter that he is okay, and now people from all over the world are posting selfies at #thumbsupforluke. We can follow everything about Luke at his Facebook page, “Help Luke make history”.

It is important to highlight the incredible resilience of families, just like Luke’s, who do not take no for an answer and carry on fighting, searching for access to treatments that could save their child’s life. The family have asked me to express their heartfelt thanks to all who have supported Luke’s crowdfunding campaign, which has managed to raise over £180,000 of the £350,000 to fund his treatment in Mexico. There is no NHS or other Government resources to financially support families when they have to have treatment elsewhere outside the NHS.

So what about the future? Not only do advances in research help progress new treatments, but that will also allow us to instil awareness of this rare condition throughout our healthcare system. This will help us improve the level of support we provide to the family. It is usually left to the parents and families to search the internet for ways to find help, with most healthcare providers in the UK left with their hands tied, with limited treatments to offer. As I have mentioned, Luke’s family were incredibly lucky to have such a successful crowdfunding campaign, but that is not available to everyone, and they still need more help.

The level of support for families is simply not good enough. We need extra support as soon as a child is diagnosed, and it must be support which recognises the fast-acting nature of the disease. Families will experience extreme pressure on their relationships, as they have to come to terms with understanding such a rare condition, as well as the huge financial turmoil that can come with a diagnosis. DIPG, as well as other childhood brain tumours, have a huge impact, and that is why I am asking for more investment, and more research and development to create that awareness and hope of a cure.

So may I ask the Minister to look at developing greater incentives for research and development into DIPG, so that families and children can access the support and information that they require at their time of need? May I also raise the critical issue of funding for research as a whole? Following a debate on childhood brain tumours in this House last year, it is very welcome that the Government set up a working group, looking at how to increase the impact and quantity of brain tumour research. I look forward to the group’s second report, which is due to be released imminently; perhaps the Minister can give us some guidance about when this report might be released.

I acknowledge that a significant amount of money is already contributed through the National Institute for Health Research and the Medical Research Council, but much more needs to be done, and quickly. I hope that the Budget at the end of this month will contain an allocation for this kind of research. Some progress is being made with a programme called Instinct, involving pioneering research by experts from Newcastle University, the Institute of Cancer Research and the University College London institute for child health, which looks at high-risk childhood brain tumours, including DIPG. This extremely important effort is led by Dr Chris Jones, who has extensive experience in understanding the genetic basis of these tumours and what is driving tumour growth.

Can the Minister confirm that when the UK leaves the European Union, the UK medical research community will continue to have access to critical EU funding and collaborative programmes once Horizon 2020 has ended? Given Luke’s example, and the fact that the family have had to go to Mexico, it is essential that co-operation on research is global, so that every child in need of help can access it, no matter where they are. Could Luke’s case be the pathway for better treatments and understanding of DIPG here in this country?

The number of children dying from cancer each year in the UK has fallen in the last 20 years, but we must not stop here. Research is the key to our progress. It is not right that the rarer a cancer is, the less attention is paid to the funding of research. There must be a unified approach in applying the progress that is made. The rarity of such conditions means that they accumulate to a far smaller market for pharmaceutical companies, which tend not to supply the drugs that are required. Research and development is difficult, particularly in relation to children.

I know that it would mean a lot to Luke and his family if the Minister or even the Prime Minister could meet them to talk about their experiences and listen to their views on how research, funding and information in this area might be improved to secure a better future for all children with DIPG. Will the Minister make that commitment to meet the family? I would like to finish by paying tribute to the resilience of Luke and his family, and of all the other families who continue to fight for their children. I hope that this debate has made a small dent in raising awareness of DIPG and other killer cancers in children. Luke has a chance, his parents have hope, his extended family have pride, and we all watch and admire their strength, resilience, dignity and love for Luke. Let us use this half hour of valuable parliamentary time to make a difference to all families who are affected by DIPG and similar diseases, and to give those children hope.

I would like to thank my hon. Friend the Member for Edinburgh South (Ian Murray) and the Minister for facilitating my short contribution this evening.

DIPG is a complex and rare ailment, and, as we have heard, the cause is not yet known, but it is important to note that the condition is no one’s fault. The Help Luke campaign raised more than £181,000 from the community and supporters so that Luke Stewart could seek treatment in Mexico. As a result of the treatment, his tumour started to shrink and die. Support has come from the whole community, including £11,000 raised by Ladies Glitterball in Musselburgh. Luke and his family live in Tranent in East Lothian, and his strength and determination to live a full life have helped him to respond positively to the treatment.

This condition is incredibly rare, yet a second child, Alex Logan, who lives in my home town of Prestonpans in East Lothian—not five miles from Luke—has this year been diagnosed with DIPG. Again, the East Lothian community and the wider community are rallying round by supporting the Action for Alex campaign through the page. Help and support have come from many places, including our local lad Josh Taylor, who on Saturday became the first professional fighter to halt Miguel Vázquez and retain his WBC silver super lightweight belt. Josh is supporting this cause along with Eric Bristow, not in a fight but in a darts match in December. The fighting spirit displayed by Josh Taylor, but also perhaps more, in their own special way, by Luke and Alex, makes me humbled and proud to represent East Lothian. DIPG remains a mystery, but children like Luke and Alex and their families cannot wait for a cure. The time has come to fund research into DIPG here and to bring hope to all children and families suffering as a result of this terrible condition.

I pay tribute to the speeches of the hon. Members for Edinburgh South (Ian Murray) and for East Lothian (Martin Whitfield). The House needed to hear about the bravery of Luke and Alex, and no one could fail to be moved by their courage and the courage of their families or by the commitment of the community in raising the much needed funding for their treatment. I thank both hon. Gentlemen for bringing those stories to life, and my thoughts go out to the brave boys and their families and friends. I agree with everyone who has spoken that research is crucial in the fight against cancer, and childhood cancers in particular. Nobody wants to hear the news that those families heard about their children, but the fact that they are approaching things with so much hope is quite inspirational, and I have the utmost respect for them.

To bring the House up to date with what the Department of Health is doing, research is absolutely critical, which is why the Department invests a billion pounds a year in health research through the National Institute for Health Research. The Department also works closely with a wide range of partners for research funding. Spending on cancer research specifically has risen to £137 million in this financial year, which is the largest NIHR spend in any disease area. However, the challenges of increasing research into brain tumours persist, and I wholeheartedly agree that that research is essential in order to improve treatment for sufferers and their families. The hon. Member for Edinburgh South referred to the Westminster Hall debate on brain tumours in 2016, and the Department has established a task and finish group on brain tumour research to investigate what more can be done. I am pleased that that report will be published before the end of the year. It has been slightly delayed—not because we are obfuscating, but because its impact can be increased by taking a little more time. I hope that that will reassure hon. Members.

The hon. Member for Edinburgh South and the hon. Member for Ilford North (Wes Streeting) both referred to the treatment in Mexico experienced by their constituents, and I acknowledge that that has come at great expense to the families and could not have happened without the generosity of the many people who have been inspired by the stories. I can tell the House that leading experts from Great Ormond Street and Alder Hey Children’s Hospital, as well as their colleagues from Europe and the USA, have reached out to the team in Mexico to better understand the treatment that is being given to patients. Without further data and discussion, it is not possible to say whether the exact treatment being offered in Mexico could be considered in the UK as part of a clinical trial, but I can assure the House that there is certainly an openness among UK experts to understand more about the treatment, which I hope will be welcomed.

I am grateful to the Minister for giving way on that point. One of the important functions that Great Ormond Street provided for Kaleigh Lau’s family was support when she was back in the UK. Immense pressures on Great Ormond Street at one point meant that a lack of access to beds and support led to a delay in her being admitted to the hospital. Will the Minister ask her officials to look at that particular issue? The nature of the condition and the time pressures—there is often a lack of time—make some of those delays even more stressful to the family. The Minister ought to probe and examine that issue.

I acknowledge the hon. Gentleman’s point, but the stress would be removed if we could actually investigate whether the treatment could be offered here, rather than have people travelling to Mexico. My priority will be to encourage discussions to enable that to happen.

Turning to some of the research that is happening at Great Ormond Street, which is the centre of excellence where we want childhood cancers to be tackled, research is being undertaken to develop T-cell immunotherapy delivery to tumours and selective therapies based on the molecular profiles of tumours. The research centre at University College London is also researching tumour markers and drug uptake. I am pleased to say that the NIHR clinical research network is supporting the NHS to deliver three clinical trials of new treatments for children with diffuse intrinsic pontine glioma. In the summer, Cancer Research UK announced its intention to fund up to two brain tumour centres of excellence to support multidisciplinary research, and the NIHR stands ready to provide full support to those new centres, together with other centres already funded by other charities, in delivering their research in the NHS. The working group is chaired by Professor Chris Whitty, the Department’s chief scientific adviser. The report is being finalised, and it should be ready before Christmas.

We know that early diagnosis is essential for all cancers if we are to provide the best treatment and support from the very start. I therefore welcome initiatives such as HeadSmart, which is working to increase awareness of the common signs and symptoms of brain tumours in babies, children and teenagers. The Department encourages the use of that initiative by professionals to signpost specialist advice, if needed, and the Department has promoted the awareness campaign with colleagues in NHS England, health visitors and school nurses.

The Government are also funding a radical upgrade of equipment to treat cancer, including £130 million to modernise radiotherapy across England. In April 2012 the Government announced a £250 million investment to build proton beam therapy facilities at the Christie Hospital in Manchester and at University College London Hospitals. The more precise targeting of radiotherapy afforded by this treatment means that higher doses can be delivered with fewer side effects and fewer long-term consequences, which is particularly important for paediatric patients.

We support the Less Survivable Cancers Taskforce, which also launched earlier this year. The taskforce aims to raise awareness of five cancers, including brain cancer, where survival rates have remained stubbornly poor for decades. The taskforce is also working to increase the number of clinical trials and treatments approved for those cancers as well as the level of research invested in them.

Despite the difficulties involved in researching new treatments for diffuse intrinsic pontine glioma, important studies are under way.

I am grateful to the Minister for giving us a fairly comprehensive answer, and indeed some hope that progress is being made on this issue. Will she pick up on the issue raised by Luke’s parents? They would like to meet her to discuss not just their experience but how Luke could perhaps help with some of that research. It would be great for her to hear directly from the parents so that she can get a full picture. It is not just about research and development; it is about their whole experience of being parents of a child with the disease.

I would be more than happy to meet Luke and his parents. As well as researching the symptoms and the possible treatments for this disease, we need to understand the experience that families go through, because support for families has to be part and parcel of the treatment. I would be delighted to hear from Luke’s parents to learn from their experiences.

We often look at these things in a very clinical way—it is clinical practice—but we are talking about human beings and we are talking about lives. There is no substitute for bringing home exactly what we are talking about when young children are suffering with such a pernicious disease.

We will build on the studies I have outlined, and we will ensure that the funding provided for research results in better outcomes for those who are suffering, particularly where they are children, but we should remember there is hope. We heard Luke’s story, and we heard that he is at school. He has lived longer than his initial prognosis, so we wish him well. We have much hope.

Here on the Front Bench next to the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Hexham (Guy Opperman), and looking at the hon. Member for Sheffield Central (Paul Blomfield), I am struck by the fact that both have lived through brain tumours and come out the other side. They are an inspiration, and they show that, with the right treatment, people can live despite having a potentially killer disease.

It is my job as a Minister, and it is the job of the Department of Health, to ensure that we leave no stone unturned in making sure that we get the best possible treatment for anyone who suffers from these conditions.

House adjourned.