Fund research for childhood cancers with the worst survival rates

12 kids in the UK are diagnosed with cancer daily. 1 in 5 will die within 5 years, often of the deadliest types like DIPG (brainstem cancer) - fatal on diagnosis & other cancers on relapse. Yet there has been little, or no, funding for research into these cancers and little, or no, progress.

This petition closed on 5 Sep 2020 with 109,179 signatures

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The Government must state how much has been given for childhood cancers and DIPG specifically. 

The Government, through the NIHR, must ringfence funds for childhood cancer research. The figures must be transparent as must the Government's answers about the lack of progress in curing these diseases.

The Government should fund awareness campaigns such as Childhood Cancer Awareness Month & Sarcoma Awareness week. Awareness + research = cure Our children keep suffering and dying.

Petition Signatures over time

Debate - Monday 7th December 2020

Childhood Cancers: Research

Monday 7th December 2020

(3 years, 5 months ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts
David Mundell Portrait David Mundell (in the Chair)
- Hansard - Excerpts

I remind hon. Members that there have been some changes to normal practice to support the new call list system and to ensure that social distancing can be respected. Members should sanitise their microphones using the cleaning materials provided before they use them, and dispose of that material as they leave the room. Members are also asked to respect the one-way system around the room, and to exit by the door on the left. Members should speak only from the horseshoe, and I therefore ask Members currently at the horseshoe to vacate a seat for the Members at the back who want to speak in the debate—once they have spoken, obviously. I call on Tonia Antoniazzi to move the motion.

Tonia Antoniazzi Portrait Tonia Antoniazzi (Gower) (Lab)
- Hansard - Excerpts

I beg to move,

That this House has considered e-petition 300027, relating to research into childhood cancers.

It is a pleasure to serve under your chairship, Mr Mundell, and an honour to lead for the Petitions Committee in this debate. I welcome the large number of colleagues who have put in to speak today, and pay tribute to those who are unable to do so due to the parliamentary covid restrictions. As chair of the all-party parliamentary group on cancer, I really wanted to lead on this petition, as it is one that has touched many parliamentarians and their constituents. Indeed, I was approached by the hon. Member for Calder Valley (Craig Whittaker), who is unable to participate today, who asked me to pay tribute to his constituents Julia and Darren, who lost their beautiful daughter Fifi to childhood cancer. I put on record my heartfelt thanks to the petitioner, Fiona Govan, who lost her grandson Logan to a type of brain cancer called diffuse intrinsic pontine glioma, and to Amanda Mifsud from the charity Abbie’s Army, which was set up following the death of six-year-old Abbie from DIPG in 2011.

Children’s cancers represent under 2% of all UK cancers. Despite this low number, that still means that over 500 children die from cancer each year. It is the most common cause of death in children. The great news is that since the 1970s, mortality has decreased by around 70%, and even with the debilitating side effects of many treatments, that is testament to the achievements of research in saving our children. One caveat to those figures is the massive variation in survival rates by cancer type: 99% survival for retinoblastoma, contrasting with 0% for DIPG. Many forms of cancer affect children, but after speaking to Fiona and Amanda, I am going to concentrate on the disease that took Abbie, Logan and so many others.

DIPG is a highly malignant brain tumour located in the pons, or pontine, area of the brain stem, almost exclusively affecting children. DIPG tumours are one of the most aggressive forms of cancer, and the prognosis for children diagnosed with it is terminal—it has a 0% survival rate. What also struck me was that while there have been huge leaps in the treatment of many other cancers and diseases, nothing can be done to treat DIPG. Neil Armstrong lost his daughter to DIPG in 1962, and since that time there has been no development in treatments, let alone a cure. Thankfully, childhood cancers are rare, but that also means that they do not get the research funding that other cancers attract, and are often seen as too difficult to tackle. As Dr David Walker wrote in The Telegraph in February 2016:

“So-called ‘rare’ cancers are collectively as common as the ‘common’ ones. But the perception that research should be funded according to incidence means that individual rare cancers are doomed forever to receive a fraction of the money.”

As such, the equivalent of a classroom full of children die from DIPG in the UK year after year, while there are no meaningful advances in treatment options and no current UK trials.

What does the petition ask of the Government? Less than 21% of research funding on childhood cancers is provided by the Department of Health and Social Care, and there is little transparency on where the funding goes. To change that, the petitioners want the National Institute for Health Research classification system to include specific cancer types and age data. They also ask for a commitment from the Government on ongoing funding obligations and for a set percentage of other funding to be ring-fenced for research on childhood cancers. We also need to look at reprioritising funding, to make sure that money is being used strategically for actual research—and that it is not spent on infrastructure, as happens at the moment.

We need to take full advantage of the highly accomplished researchers we have in the UK, such as Professor Chris Jones, but they need funding to answer the key scientific questions, such as, how can we do better and how can we help these children? That has been done in other countries. The Australian Government awarded about $9 million in 2019 and 2020 for childhood cancer research, and there have been extraordinary advances in outcomes on some cancers. If we can get that funding, the UK can become a centre of excellence in the field.

Yesterday, Fiona sent me an email with a message from one of the families, who are going through an incredibly hard time with their son Joshua. Josh’s mum, Michelle Beresford-Smart, writes:

“Josh is still with us, but since August has been bedridden and no longer able to communicate. Completely paralysed by the end of September and blind in October and no longer able to swallow. About 10 days ago his breathing changed and this week he was put on a syringe driver. No life, just waiting for the inevitable. Horrendous. Josh… was diagnosed in August 2017 with a tremor in his right hand. The GP told us we were being paranoid! Just a trapped nerve!”

Nine days after the GP appointment, they were in Great Ormond Street Hospital. Michelle writes:

“My son was 15 at diagnosis. He is now 18. But, as you know, there aren’t any options here in the UK. He did radiation and chemo and then we were lucky enough to get him on the ONC201 trial in New York. We last visited in February 2020, then COVID struck and options were taken away.”

These incredible women told me their stories about making a change for other families and their children who will be affected with poise and passion, and today I am speaking up on behalf of all the families who deal with the tragedy of losing a child. I ask the Government to do the right thing and fund research on rare cancers to give future generations a fighting chance.

The majority of fundraising is done by parents and family-led charities. Earlier today, I heard that Alison Caplan, a constituent of the hon. Member for East Renfrewshire (Kirsten Oswald), lost her son Daniel, aged 17, to DIPG last week. He was a bright young lad who had his whole future ahead of him. His funeral is this Friday and the family hope to help other children who are diagnosed with cancer, especially DIPG.

These are people who have lost a child to a horrendous disease, but still they continue to fight for better outcomes for future generations. They deserve to have their voice heard and I am proud to have been able to speak for them today.

David Mundell Portrait David Mundell (in the Chair)
- Hansard - Excerpts

To ensure that everyone can make a meaningful contribution, I am imposing a four-minute time limit.

Sarah Atherton Portrait Sarah Atherton (Wrexham) (Con)
- Hansard - Excerpts

It is an honour to serve under your chairmanship, Mr Mundell, and to follow my Welsh colleague, the hon. Member for Gower (Tonia Antoniazzi), who moved the motion on behalf of the Petitions Committee.

I want to speak about unbeatable Eva, a 10-year-old constituent of mine. I have been involved and in contact with her since she was diagnosed with DIPG in January. As we have heard, this is an inoperable brain tumour, inside the brain stem, and the prognosis is a life expectancy of less than 12 months. Today, it is 11 months and seven days since Eva was diagnosed with that horrendous tumour. The global pandemic has been particularly cruel to Eva and her family. Not only was there no suitable treatment for Eva in the UK, but she was unable to fly to the United States to receive experimental treatment. The cruel hand of covid stopped Eva travelling to Europe to receive life-prolonging pharmaceutical treatment. Think for one minute about the agony faced by a parent knowing that treatment is available and could prolong their child’s life, but being powerless to do anything about it. How cruel is it that, in any other year, Eva might have received that treatment? Covid took that chance from her.

The benefit of these debates is that they show the strength of feeling on a topic. Petitions allow the public to influence what we, as parliamentarians, discuss. Eva and her family should be proud of how much awareness they have raised nationally for this cause. DIPG has been talked about by many Ministers and the Health Secretary. Eva’s name has been mentioned by the Prime Minister in the Chamber, and her plight was highlighted on “Children in Need” and across the news channels. Wrexham has rallied around this little brave girl, and her parents have privately raised more than £310,000 to fund her treatment. I am here today for Eva, and I hope, Mr Mundell, that you deem it appropriate for me to read out a statement from her father, Paul.

We are here to advocate and fight for our constituents; that is our job. However, what really matters is how our constituents interpret the situation they find themselves in—life through their heartbroken eyes, facing tragedy day by day. Paul has asked me to read this out: “60 years ago, Neil Armstrong lost his daughter to DIPG. On the 1st of January this year, when we received Eva’s diagnosis, her treatment plan was the same as it was all those years ago. The lack of progress is solely down to one thing—funding. In a week where the UK Government approved a covid vaccine, having spent in excess of £6 billion on research and development, it is hard to feel anything other than anger. If some of that money had been spent on the cure for this horrific form of cancer, imagine how many parents would have been spared the conversation we had with doctors in January, and more importantly, imagine how many children would have been able to live full and happy lives, as every child should. All cancer is devastating, but the facts about DIPG and the devastation it causes parents, siblings, grandparents, friends and family make it the very worst of the worst, and more must be done where it can.”

Eva’s treatment journey has at every twist and turn been thwarted due to inaccessibility, cost, lack of understanding and research, different healthcare regimes between England and Wales, and covid-19 restrictions. This brave little girl with a beautiful smile has the arms of Wrexham wrapped around her.

Further research in this field is required. Existing DIPG treatments available around the world are not available here. However, we have the desire in this country to fund research on this childhood cancer, as this petition proves. We have the talent in this country to undertake that task, and we have the best—the unique—national health service, free at the point of delivery. We cannot let children lose their childhoods, cut short due to funding and research issues. Let us hope that this debate starts a reassessment of how we look at children’s cancer going forward.

Chris Evans Portrait Chris Evans (Islwyn) (Lab/Co-op)
- Hansard - Excerpts

I thank my hon. Friend the Member for Gower (Tonia Antoniazzi), a fellow member of the Petitions Committee, for introducing the debate. There is no greater champion of families affected by cancer, and I thank her for all the hard work that she does for them, week in, week out. In the short time available, I will tell the story of Izzy Withers, a constituent of mine who tragically passed away last year due to childhood cancer. Her mother Tracey shared their experience in the hope that it would highlight the desperate need in this country for more funding for childhood cancer treatment.

In August 2018, 16-year-old Izzy fell ill, and in September that year she received the devastating news that she had DIPG and a stage 4 brain tumour. DIPG is a highly malignant childhood brain cancer that disables the nervous system, and the prognosis is grim—fewer than 10% of children diagnosed survive longer than 18 months. That meant that Izzy was effectively handed a death sentence. DIPG is very resistant to chemotherapy; it is extremely difficult to treat. Tracey Withers described the tumour as like sand in grass. The treatment of Izzy, like that of Karen Armstrong, Neil Armstrong’s daughter, therefore consisted of radiotherapy, which in turn destroyed their healthy brain tissue. The radiotherapy affected Izzy’s ability to walk and use the left side of her body. She eventually lost all capacity to walk. After seven weeks at the Royal Gwent Hospital and two weeks at the Teenage Cancer Trust in Cardiff, Izzy and her mother spent 13 weeks living at Tŷ Hafan hospice. Tracey described Izzy’s illness and the effects of the treatment as a bit like locked-in syndrome. Her body shut down and she lost the ability to walk and move, and eventually she struggled to swallow. Children with DIPG die a protracted, painful and horrendous death. That is why more funding is needed for research to ensure that, in the future, children diagnosed with childhood cancers with a low survival rate and their families have more options.

For children such as Izzy, care is inadequate, and other, more practical factors increased the problems that Izzy and Tracey came up against in trying to get access to treatment. As Izzy was 16, she was not classed as a paediatric patient or an adult. That put her in administrative limbo. Hospitals were unaware of where she should be treated, who should treat her and who would foot the bill. That left Tracey with the extra burden of chasing hospitals for treatment and looking for counselling and other support. Tracey was often the one who had to find out where Izzy could receive care and what sort of care she could receive. That was yet another stress that she should not have had to deal with.

It goes without saying that caring for a child with cancer is phenomenally tough. Those parents care for their children emotionally and practically while trying to come to terms with the intricacies of their illnesses, all the while having to process that themselves and realising that they face what every parent dreads more than anything: outliving their own children. They should not be faced with added stresses and tasks because their children fall into the limbo between paediatric and adult care. That was also frustrating for the senior clinicians in charge of Izzy’s case, who felt that they were going round in circles over who would treat her.

Tracey received invaluable support from the Teenage Cancer Trust, CLIC Sargent and the Tŷ Hafan hospice. Those charities do incredible work for children with cancer, helping children and their families to navigate the medical and emotional sides of their illnesses. Without those charities, families such as Izzy’s would be completely lost. That is a failure on the part of the state to provide adequate care and funding for children with cancer. Izzy was given a dignified death thanks to the Tŷ Hafan hospice, which relies entirely on charity.

I say this to the Minister: three children died last week from DIPG alone. That is three families who now face a Christmas of grief. We must do more. The ring-fenced funding is not enough for a country that prides itself on scientific research. We could be leading the way, but we have failed to do enough. Some things go beyond politics, and this should be one of them. Few of us can imagine what Izzy’s family have gone through, but we must do more to stop others experiencing the same.

I want to end by thanking Izzy’s mother, Tracey, for allowing me to share her story, for her bravery and, above all, for her desire to ensure that no other family goes through what hers have been through. She said that she is praying that this is the start of a change that gives hope to families such as hers. I hope the Government listen and bring about real change.

Steve Brine Portrait Steve Brine (Winchester) (Con)
- Hansard - Excerpts

It was the privilege of my life to hold the role of cancer Minister in the previous Government. Through that work, I learned of the battles of DIPG patients and the all-too-tragic outcomes.

As ever, it is the personal stories that connect. I wish I could show Members the pictures, but I have the words of Emily, the mum of Atticus—a fantastic name:

“In June 2018 our happy, charming, caring 4 year old son started to exhibit very mild symptoms which gave us cause for concern. Slight issues with balance, difficulty concentrating and mild drooling. Nothing significant but… you know when your child is not ‘right’… Atticus went… for a CT scan and was the referred to Southampton General for an MRI. On 1 July 2018, 2 years ago, my husband and I were guided into a small room to be given the results. I will never forget that moment. The neurologist told us that… he had a likely survival time of 9-12 months. In one breath our whole world came crashing down and we began to grieve—even though Atticus was still with us… On 7 February Atticus fell asleep forever in the bed next to me. I’ll never, ever forget watching my child pass away. It is the most unnatural, unjust and devastating experience any parent can suffer.”

Emily wrote to me again the other day:

“As we face the second Christmas without our beautiful boy, we can take some comfort in the prospect of increased funding and research to help eradicate this terrible cancer. It is all we can hope for.”

I guess the question is whether we—and whether they—have hope. As has been said, a child diagnosed with DIPG today faces the same prognosis as a child diagnosed over 50 years ago. Survivable rates are near zero for this particular cancer.

It is true, as the Government said in their response to this petition, and as the Minister will almost certainly say today, that

“we have invested £1bn per year in health research through the National Institute for Health Research”.

Expenditure in this area is the largest it has ever been. I remember working with the Tessa Jowell Brain Cancer Mission. It was a privilege to work with Tessa and her daughter Jess, who were very forceful ladies and very good at lobbying Ministers, including me. We were able to promise an extra £40 million over five years for brain tumour research as part of the mission’s work. That included funding for childhood cancers.

One key point of their work was to stimulate the research market in this area, to see new research propositions come forward. Tessa understood that acutely. It is never the case that we have enough money for health research. I suggest that we need both investment and strategy. That is why I was struck by this particular recommendation in the campaign that led to this petition, which the hon. Member for Gower (Tonia Antoniazzi) touched on.

The UK does have excellent collaborative research at our medical facilities, but we must assign sufficient funding to DIPG research and implementation of the new treatments. I urge the Government to convene and appoint special UK experts directly to centralise efforts and bring forward that new prioritisation strategy, so that we can stimulate the research market, as Tessa and her campaign urged me to do when I was sitting in the Minister’s position.

The Minister cannot wave a magic wand and make this go away—I have sat in her place enough times to know that. However, we can agree to make this change and to work together to finally face DIPG and start to turn the corner, with the collaborative strategy that I have mentioned. That is the hope—to reiterate that word—that these families want. I do not think that is too much to ask.

Carla Lockhart Portrait Carla Lockhart (Upper Bann) (DUP)
- Hansard - Excerpts

I thank the hon. Member for Gower (Tonia Antoniazzi) for securing this important debate and all those who signed the e-petition. Cameron Truesdale’s name will not resonate with people in this room, but I am speaking of a little boy who is now safe in the arms of Jesus. He was a little 11-year-old boy from my constituency, who had so much to live for but who did not get the opportunity.

His mum described him as sweet, shy and popular. He never had a bad word to say about others. He was good at maths. In his own words, he wanted to be an “entrepreneur”. He was a super cool big brother and he adored his sisters Chloe, Courtney and Catlin. Sadly, Cameron’s life ended on 3 September 2018, but his memory is still alive.

When Cameron was diagnosed with DIPG cancer in January 2017, his family were told that he would have nine months to live, if he was to receive radiotherapy and steroids. “Go home and make memories”—the most chilling and heart-wrenching words that any family will ever hear. Cameron’s family were devastated that in the 21st century they would be told that there was no hope and, no matter what they did for Cameron, he would die anyhow. Cameron’s family believe that where there is life, there is hope. Cameron’s family immediately looked at therapies around the world. They raised thousands of pounds and travelled to Mexico, where Cameron received treatment. While it did not save his life, it gave them hope and extra time to make those memories.

Cameron and his family fought DIPG with courage and determination. Cameron did not want to die. Even towards the end, when he was very poorly and DIPG had stolen every function apart from his ability to know what was going on, his mum asked him whether he wanted to stop fighting and just rest, or for her to stop fighting. With tears running down his face, even in agony, he did not want to stop, because he loved life.

We have already heard today that the survival rate for DIPG is 0%. That is just not good enough and not what we should settle for. Cameron should not be a statistic and we do not want any other families to go through the pain and anguish of losing a child. In Northern Ireland alone, three young people are diagnosed with cancer every week. That means three young people facing huge physical and emotional challenges, doubts, fears and anxieties. We must ensure that science is being supported to increase survival rates and to break this dark, sleekid thief.

Globally, we have poured billions into finding a vaccine for covid-19, because the will has been there to do so. We need a similar will and focus on cancer. I recognise that the Government have invested millions of pounds into cancer research, but amid the myriad cancer types that exist, we must ensure that childhood cancer receives the specific attention that it demands. I fully support the call for ring-fenced funds for new research. We need a specific fund that targets childhood cancer, and particularly those cancers that have the lowest survival rates. We need transparency on specific cancer types and age data, and we also need exceptionalism and expediency. Every life lost is one too many.

The message of the last week, with the news of the covid vaccine, brought hope. It also highlighted that when science is supported, it can make the breakthroughs we need. The Government should do the same for cancer, because none of us knows whose family could be next.

Derek Thomas Portrait Derek Thomas (St Ives) (Con)
- Hansard - Excerpts

I commend the hon. Member for Gower (Tonia Antoniazzi) for opening this debate, and I also commend Fiona Govan for her incredible work to secure the signatures needed to trigger this debate. I know that Fiona would say that it is the least she could do following the loss of her grandson, but she, along with many other families suffering the same trauma, expect us to do something. The Minister understands that, as I know her to be a caring and compassionate individual.

In Fiona’s case, as we have heard, her grandson Logan died of a DIPG, which is a childhood cancer that wipes out hope and brings to an end a life of promise and potential. DIPGs, as we have heard, are tumours that are highly aggressive and difficult to treat, found at the base of the brain. But Fiona and her family are not alone; we all have families in our constituencies who have lost children to brain cancers.

I have the great honour of chairing the all-party parliamentary group on brain tumours. The charity that supports this influential APPG was born out of the loss of a girl following a diagnosis of DIPG. I cannot pretend to know what a family goes through when they are told such terrible news, but I can share a little in the pain, having lost a son at just nine months old. An account of Fiona’s family’s story can be found on the Brain Tumour Research website, and it is really powerful reading, for those who have not read it already. It sets out precisely the journey, and the trials and the challenges, that they had to go through, as their son and grandson lost his life.

When a family is told that their child has a DIPG, they do not have to search far to learn that just 10% of children diagnosed with this type of brain tumour survive for up to two years following a diagnosis, and that only 2% survive for as long as five years, and we know that few of these children, if any, survive at all for longer than that. As we have heard, this prognosis has not improved.

The work of the APPG is extensive, but what is particularly relevant to this debate is a recent meeting with Midatech. Midatech is a British-based company, which in October announced

“‘encouraging’ headline results from a phase 1 study at the University of California… in patients with… (DIPG)”.

We were told that in a cohort of seven children with DIPG who took part in a clinical trial whereby a drug is delivered directly to the brain via a catheter, five survived beyond 12 months and three continue to be monitored.

As always, it is important that we carefully manage the expectations of families with very sick young ones. However, the purpose of this debate is not to present the problem, which is well documented, but to seek to identify what will unlock the solution. We are aware of 200 failed drug trials relating to DIPG. There are very few promising signs, which is where I turn to the Minister. Will she investigate why a British company is limited to running clinical trials in the US—in the case of Midatech, in California and New York? Will she work with the National Institute for Health Research to find a way of committing and ring-fencing funds directly for research into childhood cancers, as the petition demands? Will she work with the APPG and Midatech to navigate a way to set up clinical trials in the UK? It seems that the only option for many parents is to travel across the world, at enormous personal expense. I associate myself with the recommendations of my hon. Friend the Member for Winchester (Steve Brine), his work on the strategy and the need for absolute focus.

The APPG has been told repeatedly there is a lack of research and clinical trials in the area of brain cancer. That can only be properly addressed if we build the skills and expertise base, but that is very hard if the Government are not proactively promoting and funding such research. We start at a low base, but with the right focus, as we have all heard, there is an opportunity to provide the hope that these families so desperately need.

David Mundell Portrait David Mundell (in the Chair)
- Hansard - Excerpts

I now call Kirsten Oswald, who should have been referenced on the call list as an SNP Member.

Kirsten Oswald Portrait Kirsten Oswald (East Renfrewshire) (SNP)
- Hansard - Excerpts

Thank you, Mr Mundell. In July, I was fortunate enough to secure a question at Prime Minister’s Question Time. As Members across the Chamber will know, that is when we try to think of the best political hit we can get, but on that day there was only one question I was going to ask. It was about a young man, Daniel Caplan, a constituent of mine who had just turned 17 and had been diagnosed with diffuse midline glioma—a brain stem tumour. As I explained to the Prime Minister, it was a terminal diagnosis and, of course, an absolutely crushing one for Daniel and his family. As the hon. Member for Gower (Tonia Antoniazzi) said, I am so sorry to say that Daniel died last week.

I did not know Daniel, but I was really struck that one of his friends, Martin, who spoke to me earlier this year about something else entirely, made sure to tell me what a great person his friend Daniel was. It is crystal clear what a special and very much loved young man he was. If I, who did not know this lovely young man, am so devastated to hear of his loss, I cannot begin to imagine how Daniel’s family can cope with it, just at the time when, if things were different, he would be looking to make his way in the world and realise all of his potential. I have been thinking about them a great deal.

For families like Daniel’s, and all those we are hearing about who have received the devastating news of a childhood cancer diagnosis, among all that awful news is the terrible realisation—one they probably never had cause to be aware of before—that there have been no new treatments for these conditions for 40 years. There has been no progress in treating childhood brain stem tumours. That is stark and shocking. It is absolutely right and necessary that we heed the call of all those families faced with that terrible news when they ask for a renewed focus on research and for a light to be shone on awareness of childhood brain stem cancers so that others do not have to face what they have gone through. I was glad that the Prime Minister agreed with me when I asked for his commitment to shine that light and to bring focus to this issue.

The Scottish Government have also done a great deal of work to improve cancer treatment in Scotland over the last decade. All these things matter, but we need a commitment from all of us not to let it lie for these young people, because although cancer is rarer in children and young people than in adults, it is often more complex and more difficult to treat.

Earlier this year, working with the Brain Tumour Charity —an organisation close to my heart—and with other Members, I tabled an early-day motion to raise awareness of DIPG. That continued focus has to be our priority, because only 10% of children with DIPG survive for more than two years following their diagnosis and research into brain tumours represents less than 3% of the UK’s cancer research budget. Those statistics should stop us all in our tracks, because in the midst of all the medical advances of recent years, affected families find that crushing and inexplicable.

All of us in the Chamber need to ensure that this area is a priority. We need to have more research and to think of it as we go forward. For Daniel Caplan and all the other children like him, and all their families, a cure really cannot wait.

Luke Evans Portrait Dr Luke Evans (Bosworth) (Con)
- Hansard - Excerpts

We can choose to be affected by the world or we can choose to affect the world. My constituent Isla chose the latter. In August 2017, seven-year-old Isla Tansey woke up unable to walk. After many horrible treatments, surgery and radiotherapy, in January 2018 she was diagnosed with DIPG. Isla’s mother described the terminal illness as the most traumatic and heartbreaking experience for a family ever to go through. Sadly, Isla passed away in July 2018, but not before inspiring thousands around the world with her positivity and creativity through her hobby: painting stones and pebbles.

Isla asked others to join in by painting their own stones, with any design, but she asked them to include the hashtag #islastones and the words “photo, post, re-hide”, and then to send a picture to a dedicated Facebook page for her to see. They were subsequently to leave the stones somewhere hidden, so that when they were found they could spread a little of the joy that Isla’s idea had given them—a little reminder of Isla’s joy. Isla’s mother, Katherine, hoped that a child might one day find one of the stones, learn about Isla’s story and become a researcher in childhood cancer.

Thousands of people took part in more than 149 countries. Although Isla could no longer walk, she loved to see where all the stones ended up and where they would travel to next. Places included the Taj Mahal, New Zealand, Disneyland and America, with a very special stone in Antarctica. Through the stones and the lovely people who made them, hid them and posted their photos, Isla travelled the world.

The hashtag #islastones grew to a Facebook presence with more than 75,000 members from all around the world. In 2019, a year on from Isla’s passing, at the Celebration of Smiles event in Hinckley in my constituency, a world record was set for the largest display of painted stones, with 8,542 stones—all in remembrance of Isla.

To continue her legacy, Isla’s parents, Simon and Katherine Tansey, set up the Islastones Foundation for raising smiles and helping to fight childhood cancer: a reminder of the fun and happiness that Isla brought to so many people’s lives. Isla is now permanently memorialised at Argents Mead in Hinckley, where her legacy of smiles and positivity will live on for ever.

Why does this matter? We have heard the stats in the debate, but these are the real stories behind the cases. Some 650 people in my constituency signed this petition to ask for transparency in the funding, for improvement in treatment options and for pulling together the clinical pathways that people who suffer in this situation have to go through. They ask for real understanding, for listening and for something to change. I am reminded of the quote:

“Your life is your message to the world. Make sure it’s inspiring.”

Isla’s message was truly that, and I hope the Government’s message on DIPG will be the same.

Grahame Morris Portrait Grahame Morris (Easington) (Lab)
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Thank you for calling me, Mr Mundell. I thank my hon. Friend the Member for Gower (Tonia Antoniazzi) not only for securing this important debate on childhood cancer, but for all the excellent work that she does as chair of the all-party parliamentary group on cancer. I also thank the petitioners who promoted this debate today.

I want to talk about the work of the Bradley Lowery Foundation, which is based in my constituency, and I want to concentrate on the need, as other hon. Members have, for Government collaboration with smaller charities and research and funding into less common cancers. The Bradley Lowery Foundation was established in August 2017 after my constituent, six-year-old Bradley Lowery, lost his fight for life to stage 4 high-risk neuroblastoma, a rare and aggressive form of childhood cancer.

In 2013, Bradley’s mother, Gemma, started a fundraising campaign to raise funds so that Bradley could get treatment in the United States—treatment that was not available here in the UK. The foundation—one of its patrons is the former Sunderland and England footballer, Jermain Defoe—supports research on neuroblastoma and other childhood cancers, is developing plans to support a £600,000 holiday home in Scarborough, and runs a support line for families of children with cancer in the north-east. The Bradley Lowery Foundation has given £200,000 to neuroblastoma research and has just pledged another £15,000 to sarcoma research. It collaborates with other research charities to ensure that more funding can be put into the right places.

We have heard from my hon. Friend the Member for Islwyn (Chris Evans) and others about the prognosis for patients who have brain stem cancer, particularly children. The prognosis is really quite dark. I point out to the Minister, for whom I have the highest regard, that the Bradley Lowery Foundation wrote to the Chancellor of the Exchequer around June of this year and is still awaiting a response. In the letter, the foundation expressed its willingness to set up a meeting with the Chancellor regarding funding for childhood cancer research, and it was seeking to secure some support through matched funding from Government.

The charity finds that although the most common incurable cancers rightly receive a lot of funding, the rarer and harder-to-treat cancers get little funding. The funding that they receive is from smaller charities and organisations that, like the Bradley Lowery Foundation, might have been set up as a legacy for families who have lost children to a particularly rare cancer. I urge the Minister to speak to the smaller charities. I am sure she does so on a regular basis, but will she speak to the smaller charities and organisations that fund this vital research, such as the Bradley Lowery Foundation? After all, it is the smaller charities that fund the harder-to-treat cancers.

If the covid-19 pandemic has proven anything, it is that, with the will and the right funding and resources, treatment and vaccines can be developed. If the Government can pledge even a fraction of the funding that has been allocated for covid towards childhood cancer research, we could no doubt find better, safer treatments a lot faster.

Greg Smith Portrait Greg Smith (Buckingham) (Con)
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When the Paul family in my constituency were told of their four-year-old daughter Georgia’s cancer diagnosis, their immediate reaction was not one of shock but of, “We can fight this; she is tough.” To then discover that there was absolutely no treatment was simply devastating for the family. Georgia had been diagnosed with DIPG—a brain tumour. She was enrolled on a trial, but it became clear that there was no chance of saving her. No matter what angle the family approached it from, DIPG is universally fatal, as we have heard already. No child has ever survived it.

DIPG remains the most fatal of all childhood brain cancers, and I fear that is in part due to a lack of funding for research. In seven short months, Georgia went from a happy, active and engaged little girl who loved life to losing her ability to walk, talk or swallow. The 28th November just gone marked exactly two years since Georgia died in her family’s arms, leaving them absolutely heartbroken.

Another constituent, Sue Farrington Smith, lost her beloved niece, Alison Phelan, to a brain stem glioma tumour in 2001, three weeks before her eighth birthday and 10 months after diagnosis. Sue went on to establish Brain Tumour Research, an umbrella group of 22 brain tumour charities that have campaigned to move the dial on funding for brain tumour research. Their campaign led to the establishment of the 2016 task group on research, and they are now working with the Government to see how the £40 million Tessa Jowell fund is spent.

The good news is that, in the past 50 years, there have been dramatic improvements in treating childhood brain tumours. Historically, 75% of children affected sadly died, but now 75% survive. That proves what research can do. In about 70% of cases, radiotherapy, which is the only treatment currently offered to DIPG patients, does shrink the tumour, which allows for a few months of normal life before it returns. Georgia, who I spoke of earlier, was one of the unlucky ones for whom radiotherapy did nothing.

I welcome the fact that improving cancer outcomes, including for children, is a major priority for the Government. I support the £1.2 billion that the Government have put into the cancer drugs fund, which has helped 95,000 people, including children, to access the latest and most innovative cancer care drugs. We have to recognise, however, that in the UK only 20.8% of childhood cancer research is Government-funded, and the rest of the funding comes from charities, the fundraising for many of which has been severely hampered by covid.

Let us commit to providing that new research funding for childhood cancers and ensure that a legal proportion of other funding must be used for childhood cancer research to adequately balance the years of life lost against the relative rarity of conditions. This is about the children who will be diagnosed in the future and who will face the same dreadful, awful news that Georgia and her family did. That will happen year after year, unless funding is allocated to research.

Wes Streeting Portrait Wes Streeting (Ilford North) (Lab)
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It is a pleasure to serve under your chairmanship, Mr Mundell, and to follow many moving and powerful speeches.

I congratulate the petitioners, because securing a Westminster Hall debate through the petition route is no small achievement. We have heard many of their stories this afternoon, and I suspect that much of the campaigning activity has been driven by families whose children have died as a result of DIPG or are suffering from DIPG. When we think about the number of families who have gone through that—it is a very rare childhood cancer—it is inspiring to see the time and effort that they put into campaigning, in some cases long after their children have passed, because they are determined that no other family should go through what they have been through or the ordeal that they have suffered.

My constituent Kaleigh Lau died of DIPG. Her family, including her father Scott, her mother Yang and her brother Carson, are just as committed to making sure that we find a cure for DIPG. I have been thinking about how the families will feel watching the debate. More than anything else, unfortunately—with great respect to the hon. Members who have spoken and the way in which they have told powerful stories—too many of them will have a sense of déjà vu.

With great respect to the Minister, who is a good person and absolutely committed to what she does, those families are not looking for warm words, reassurance or sympathy. They want action. They want to know what the Government are doing. They want to be able to hold the Government to account for progress against that action. They want real commitments. So far, although we have undoubtedly had steps in the right direction from successive Ministers, progress has been insufficient. Certainly, that is how Kaleigh’s family feel and how I feel as their constituency MP, having raised the issue on a number of occasions in recent years.

We know from Cancer Research UK of some of the challenges of researching children’s cancers. There are too few researchers, too little discovery research, not enough industry support, poor awareness of particular cancers, fragmented expertise and a lack of research tools. That is absolutely true in the case of DIPG, which is incredibly rare, as we have already heard.

What could we reasonably ask of the Minister? What would we like her to say, if not this afternoon, then in the not-too-distant future? We want to ensure that the UK seeks to be a world leader in researching DIPG and in the efforts to find a cure. We want to ensure that the UK seeks to be a world leader in researching DIPG and in the efforts to find a cure. I was particularly struck by the experiences of the hon. Member for Winchester (Steve Brine), who speaks with great authority and experience, having done the job and understanding the pressures on his successor. I think that the sort of action that he outlined would give families some reassurance that serious actions are being taken, but also that that is transparent and we can measure and monitor progress as personalities come and go—and hopefully, in the not-too-distant future, Governments too. In all seriousness, I think that the strength of cross-party consensus on this issue is obvious, and the Minister will get a great deal of support from those on the Opposition Benches if she is able to come forward with that kind of action plan. That is really what the families are looking for today.

Duncan Baker Portrait Duncan Baker (North Norfolk) (Con)
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I thank the hon. Member for Gower (Tonia Antoniazzi) for bringing such an important debate to the fore. Many people will know what the bond is like between parent and child, so just imagine what it must be like for families to then lose their child. That is a thought that, as a parent, I personally cannot bear, yet it happened in my community this summer. My community of North Norfolk is very close and loving, and things are very much the same in the Pitcher family. On 12 July, little Benny Pitcher lost his battle, after just over a year, with diffuse intrinsic pontine glioma—DIPG. He was just six years old. Never before have I witnessed grief in my community like it, as people lined the streets to watch that bravest of little men make his way to Cromer crematorium. That little boy captured the spirit of everybody who met him. He was, like the characters that he adored, a little superhero.

I first became involved with the family, Julie and Kevin Pitcher, when helping them to achieve planning permission for their house so that little Benny could live a more comfortable life as his cancer took hold and his health deteriorated, but cruelly he was even robbed of being able to move into the extension when he passed away just a week before the builders finished. That was despite enormous work by the community—hundreds of people helped. I was not an MP at that time, but the Pitchers’ story touched me, like so many others. How could it not touch you to witness a family go through what Kevin and Julie experienced? I am proud to say that I helped them and now call them my friends.

As we all know, the Pitchers will not be the last family to suffer at the hands of the cruellest of childhood cancers, and it is because of stories like theirs that parliamentarians like us must do absolutely everything we can to provide help and support, and ensure that as much funding as possible is provided for scientific research. As we have heard, there is a 0% survival chance with DIPG. There has been no improvement over the last 50 years. In the 21st century, surely that is not good enough. We have to do what we can to turn around the fact that cancer is still the most common cause of death in the under-15s. As we have heard, if we can fund and produce a vaccine for covid in nine months, surely we can do more on childhood cancers and improve the fact that only one fifth of childhood cancer research is funded by the Department of Health and Social Care.

I would also like to make the point that when people’s lives are turned upside down overnight by the knowledge that their child will pass away in a very short time, we must do more to support those families, who end up being carers. Every waking moment should be spent with their child, not worrying about what forms need filling in or where they can go to get help. Where is the one-to-one handholding—the service that really could help to lessen the strain that those families experience?

I want to place on the record my thanks to the incredible communities that I serve and the selfless people who raised so much money to help the Pitcher family, and particularly to the Pitcher family themselves. Their work alone back in North Norfolk has raised the issue of childhood cancers. The incredible strength that the family have shown through such adversity is admired by everybody who meets them. Benny’s father, Kevin, made a promise to his son that he would run a marathon to raise funds for this cause, and it is the true mark of that family that Kevin will fulfil his promise in the spring and honour his son Benny.

Rachael Maskell Portrait Rachael Maskell (York Central) (Lab/Co-op)
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It is a pleasure to serve under your chairmanship, Mr Mundell. I thank all hon. Members for the way they have spoken so movingly. I put on the record my thanks to Chris Copland, from my constituency, who helped me prepare for the debate, and to all the petitioners, who obviously signed the petition wanting to see real change in the life chances of children.

Grace did not lose her battle with cancer. The truth is that Grace’s battle was lost before she was even given a chance to fight. The battle was lost by the lack of research into the No. 1 medical cause of death of children in the UK: childhood cancer. I was struck by the words of Dr Jen Kelly, who told me of her little girl, Grace, and how she died in her arms, just four and a quarter years old, of a rhabdoid tumour. I am grateful to her for sharing the story of her little girl, Grace, with me. She continues to fundraise and champion the cause of all children.

Every year, 1,900 children receive the devastating news that they have cancer. Parents have to equip themselves to deal with that, often without the information that they need at that time being readily available. For Grace’s family, the time was too short, and they were simply told to do research on the internet. They have used the legacy of Grace to turn that around for other parents.

Just two weeks ago, many of us spoke in this place about the opportunity to extend research in certain medical areas. The Association of Medical Research Charities called on the Government to establish a life sciences-charity partnership fund. I listened intently to the Chancellor’s statement and was sorry that no announcement was made. Cancer Research UK alone has had to cut its research budget by £44 million this year due to covid. Charities have also lost £10 billion to date, and this year is not getting any easier for them. However, today marks the start of UK Charity Week, with its slogan, “What will you be doing?”. I put that question to the Minister, because this week again provides an opportunity for action. It is worth recalling that, for every £1 spent on childhood cancer, there is a potential £3 return, not to mention the human benefit that this brings.

There is an opportunity for us to go further. We trail behind our European counterparts in early diagnosis. A prime goal of at least catching up with all European countries would be a first step.

We also need to ensure that we are part of that global community of research, and that we play our role in leading that. Before the closure of talks with the EU, we need to make sure that opportunities to participate with other European countries are not diminished at this time but accelerated. There is hope on the horizon. There has been much discussion about Horizon research funding over the years. This new round, which is coming over the horizon, is very much related to cancer, and discussions are certainly taking place about the role it can play in advancing research into paediatric cancers. I trust that the Minister will tell us how she is participating in that debate in order to make what all of us have called for today a reality for the families who desperately need that help.

Patricia Gibson Portrait Patricia Gibson (North Ayrshire and Arran) (SNP)
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I am glad to participate in this important debate. I thank the hon. Member for Gower (Tonia Antoniazzi) for the comprehensive exposition that she gave at the start of the debate, and all those who signed the petition calling for more funding for and focus on childhood cancers. The fact is that this petition was born out of a sense of frustration and grief. That is why more 109,000 people across the UK signed the petition, and why so many people in my constituency supported it.

Twelve children in the UK are diagnosed with cancer daily, and one in five will die within five years, often of the deadliest types, such as DIPG—brain stem cancer, which we have heard a great deal about. Yet as we have also heard, there has been insufficient funding for research into these childhood cancers, and little or no progress in the treatment of DIPG appears to have been made over the past 60 years, while treatments for cancer in general have made positive strides.

DIPG, or diffuse midline glioma, accounts for between 5% and 10% of all childhood brain tumours. They are high-grade, fast-growing tumours and can spread throughout the brain. The main treatment for this type of cancer is radiotherapy, but it remains difficult to treat and the prognosis is poor, as we have heard from several Members during today’s debate.

The fact is that young people who face cancer do so with unique challenges. It is the largest killer disease of young children, and as my hon. Friend the Member for East Renfrewshire (Kirsten Oswald) reminded us, cancer is rarer in children and young people than in adults, but it is often more complex and difficult to treat. As such, greater funding of research and greater focus on childhood cancers are important and will undoubtedly contribute to prolonging and saving young lives in the future. What we are debating today is about saving the lives of children.

For a few years now, I have been in correspondence from time to time with a woman in my constituency called Fiona Govan, who also spoke with the hon. Member for Gower. Fiona is an ordinary woman, but in some ways she is also pretty extraordinary. Since the loss of her young grandson, Logan Alexander Maclean, who passed away at three years old on 17 October 2017, she has worked extremely hard to raise awareness of the disease that claimed his young life.

Logan was diagnosed with DIPG. His family were told that he would not see his fourth birthday, and he did not. What news to receive about your little boy or grandson. The family, like many before them, had never even heard of DIPG. Logan coped with his biopsy to confirm his diagnosis—apparently, some children do not and immediately lose even more function. He also responded well to palliative radiotherapy, the treatment that has been the only option since the 1960s. However, as advised, Logan’s family made as many wonderful memories with him as they could, treasuring every moment they had left with him. As we might expect, Logan’s family have nothing but praise for Logan’s treatment and the medical professionals who cared for him at the Royal Hospital for Sick Children in Glasgow, University Hospital Crosshouse in Kilmarnock and CLIC Sargent, and so many others.

Logan’s grandmother, Fiona Govan, does not want other families to suffer the loss that she and her family have. She was keen to let me know, in preparation for this debate, that we should remember that every year, children with their whole lives ahead of them—with all their unfulfilled potential—develop what seem like minor ailments, only for their parents to be told that their child will soon die of DIPG. It might be that the child develops a slight limp, as Logan did when he was two years old. It might be that they mention a pain in their hand, like Reece, aged 11, did. They might start to choke on their food, as Sofia, aged six, did. Like Eva, aged four, they might develop a lopsided smile, or like Evie, aged 13, they might begin to slur their speech. They may have night terrors like Ollie, aged 12, or migraines and vomiting as Izzy, aged 16, did. There are so many other cases. Gradually, these children lose their motor functions. Following diagnosis, some children survive only weeks, some are spared for a few months and, very occasionally, some will have a few years, but they will all die.

I mention these children as a reminder to all of us that the loss caused by childhood cancer must not become about abstract statistics. The loss is real, and families are never the same again after the loss of a child. The death of a child is unlike any other loss it is possible to experience, because it is the loss of a life unlived—the loss of a promised future—and defies all natural order. Parents burying children is a grotesque inversion of nature. It is the lot of children to bury their parents, not the other way around.

Just as many of my parliamentary colleagues did, I signed a letter calling on the Chancellor to uplift UK Government support for medical research to ensure that vital research on childhood cancers can continue, but not just that: research is needed to improve outcomes, with ring-fenced funding for children whose cancer is more complicated and difficult to treat than many cancers in older people. The fact is that so little progress has been made on DIPG, which is both distressing and alarming. That explains why DIPG is being treated in the same way it was in the 1960s. That cannot be right, considering that it is so deadly and accounts for so many childhood brain tumours, and given advances in treatment of other cancers.

We know that medical research budgets are under huge strain due to the restrictions on raising funds that covid-19 has created. That strain will impede and impact on medical research. The Government must ensure that research on DIPG is given greater priority. We cannot bring back the children who have been lost to cancer or the dreadful DIPG, but we can honour the memory of the children who have gone by deciding to renew our commitment to fund research into childhood cancers, which will help save children’s lives in the future. The Government must be able to say—we all must be able to say—that we are doing all we can to save children’s lives.

David Mundell Portrait David Mundell (in the Chair)
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There are about 20 minutes for Mr Norris and the Minister, because I would like the hon. Member for Gower (Tonia Antoniazzi) to have a few minutes to respond to the debate.

Alex Norris Portrait Alex Norris (Nottingham North) (Lab/Co-op)
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It is a pleasure to serve under your chairmanship, Mr Mundell. I commend the petitioners for securing this important debate about childhood cancer. As my hon. Friend the Member for Ilford North (Wes Streeting) said, it is hard to get the required signatures for these debates, and it happens only when the issue is as significant as this. I hope that the petitioners will see that their efforts have been rewarded with as full a House as we can have in the context of covid-19 and with the high quality of this debate.

I echo the comments commending Fiona Govan, who set this petition up following the tragic death of her grandson Logan in 2017. I am sure that many of the over 100,000 people who joined her in signing it have been touched personally by this issue. I say to Fiona and all those watching that the way that she and they have turned their grief into action is an incredible feat of bravery, which has had a powerful, important impact on all of us as legislators and has pushed us to drive change more quickly. I know that is what they want. I also thank Brain Tumour Research, which has been a phenomenal driving force in this area with the petition, the debate and all the other work that has gone on.

This debate has been an important reminder that, while we were elected by voting-age people almost a year ago today, we represent all of our constituents, including children. MPs have spoken today for those children: Logan from Ayrshire, Izzy from Islwyn, Daniel from East Renfrewshire, Georgia from Buckingham, Isla from Bosworth, Benny from North Norfolk, Kaleigh from Ilford, Grace from York, Cameron from Upper Bann, Atticus from Winchester, and Bradley from Easington. Their stories have been told by their representatives today, and their names will live on in the record for as long as this Parliament stands. I know that will not bring those children back to their families, but I hope that they can take some comfort from it. As we make progress in this place—we will make progress—I hope they can also take comfort from the fact that their children have been an integral part of this story. I am sure we all want to send our prayers to Eva from Wrexham and her family as she goes through her treatment.

We heard contributions from my hon. Friends the Members for Gower (Tonia Antoniazzi) and for Easington (Grahame Morris), as well as from the hon. Member for St Ives (Derek Thomas), who all provide leadership through their relevant all-party parliamentary groups, which do really important work in keeping this at the top of the inboxes of busy Ministers. I know they will continue to make significant efforts to turn today’s discussion into activity and change.

I must talk about a few numbers, because we have to discuss this at a global level. But before I do, I want to say, as all colleagues have, that behind every number is a child who has had their life taken before they have had the opportunity to really live it, and their family, who have to live with this extraordinary pain. As a country, we must strive to do our best for children who are afflicted by cancers, as if they were our own. We must take the efforts of parents, which we have heard about today, and act with that level of urgency. As colleagues have said, covid-19 has shown what can happen when we join together in common purpose and are properly resourced to meet great challenges.

Cancer remains the most common cause of death in children, with around 240 aged 14 and under dying each year. Research has made significant inroads. Mortality has decreased by around 70% since the 1970s. The five-year survival rate for retinoblastoma is now 99%. There are recent examples, too, with a clinical trial for acute lymphoblastic leukaemia improving survival rates by a quarter, thus offering promise for the future. However, as colleagues have said, that picture is inconsistent. The incidence of childhood cancer has risen by about 15% since the 1990s, and there are many cancers for which the five-year survival rate remains devastatingly low: it is 67% for neuroblastoma, 65% for bone cancer and 32% for atypical teratoid rhabdoid tumour.

Then, of course, there is DIPG, which Logan Maclean suffered from, as have many others, as has been mentioned today. When I spoke to people at Brain Tumour Research about DIPG, they labelled it the monster of all monsters: there is no cure, the two-year survival rate is less than 10% and the five-year survival rate is zero. As to treatment, surgery is rarely an option. Radiotherapy is the preferred option, but it is suboptimal, providing a temporary positive response but not a curative one. Chemotherapy has been trialled, but that is all. The only way out today —and the only way out for our collective energies—is through research. That is how we will make the difference for DIPG and for cancers in young people on a wider scale.

At the moment only about 20% of childhood cancer research is funded by the Department, with the rest funded by charities—most significantly Cancer Research UK. What assessment has the Minister made of how the gearing could be improved and what the results of that would be? Similarly, on brain tumour research, I know that the Minister will refer to the welcome £40 million that the hon. Member for Winchester (Steve Brine) spoke about, which was announced in 2018 as part of the Tessa Jowell Brain Cancer Mission. Two and a half years later, I understand that only about £6 million of that has been allocated. Will the Minister confirm that and set out what the plan is for the other £34 million? That money needs to be put to use for the things we want it to be used for.

Charities, as I have said, are playing a crucial role in research, but their fundraising avenues have been severely hit by covid, so research funding is in danger. Sue Farrington Smith, the chief executive of Brain Tumour Research, put it bluntly:

“The stark reality is that charity-funded research into brain tumours could stop and the vital progress we have made will be lost.”

What are the Minister’s views on that? What assessment has the Department made of the resilience of research funded by charities and of how we are, at least in the short term, going to fill the gap that covid has created?

I want to finish by majoring on the points that the petitioners asked us and the Government to focus on in moving towards solving childhood cancer. First, transparent data classification systems, coming through from the National Institute for Health Research, could be dealt with relatively simply and quickly, so I hope the Minister will support that. The petitioners also ask for the ring-fencing of funding for research on childhood cancers. Finally—this is important for rare cancers and rare diseases more broadly—they want the incentivising of research in these areas, where the incentives will not, clearly, be financial. Taking those steps would make a significant difference for future children and families, who will not know that we are having this discussion. I would like to hear the Minister’s assessment of those asks. Will she let us know more broadly what steps the Government will take to reach those goals?

The debate has been a poignant and moving one, but those who signed the petition and triggered it want action. They have set out what those actions might be. It is time for us to pull together and get on with it.

Jo Churchill Portrait The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)
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It is a pleasure to serve under your chairmanship, Mr Mundell.

I want to begin by congratulating the petitioners, as other Members have, and by thanking the hon. Member for Gower (Tonia Antoniazzi) for securing this important debate. It has been one of the most poignant I have attended—I am sure we can all agree about that—and it is my fourth debate about cancer in the past five days. Each one shows the devastation that that disease brings to families, but that has been particularly so today, because we have been speaking of children. As the hon. Member for North Ayrshire and Arran (Patricia Gibson) said, there is no way to feel, in burying a child or grandchild, that that is the right order of things.

I agree entirely with those Members who said that we are stronger when we act together—particularly in the world of cancer. That brought me to this place, and I hope to do a little good while I am here, in this sphere in particular. I want to add my voice to the chorus of tributes to Fiona Govan, who, as we have heard, started the petition after the death of a much-loved grandson, Logan.

As many Members have expressed, DIPG is a brutal cancer—we are seeing success with some cancers, but DIPG is particularly difficult. Fiona has vowed to do everything she can so that future generations will never have to experience the pain of losing a child, as her family did. As we have heard today, however, Eva, Izzy, Atticus, Cameron, Daniel, Isla, Bradley, Georgia, Kaleigh, Benny, Grace, Reece, Evie and Ollie have all been treasured and lost. It is to their families that I address my remarks. Nearly 110,000 people stand in solidarity with Fiona, and I am grateful to the Petitions Committee for its important work.

I am honoured to speak about this most important of petitions on behalf of the Government this afternoon. My heart goes out to all families affected. The pain of the diagnosis of DIPG and the subsequent treatment is something that no mother, father or grandparent should ever have to go through. The very thought of it in the 21st century is unbearable, yet Fiona’s experience and others’ experiences, which we have heard about through the many powerful and compelling contributions to the debate, remind us too painfully that although we have come a long way—there have been improvements over the past 40 years—we have not come far enough, particularly with DIPG. The dial has not shifted.

In the past 40 years, we have seen good progress in the treatment of childhood cancers. Thankfully, the majority of children will now survive cancer. However, the most pernicious cancers, such as DIPG, remain a deadly threat. Our research must continue, and I agree with hon. Members that it must intensify. The National Institute for Health Research is the largest national clinical research funder in Europe. As has been said, we have invested over £1 billion so that some of the finest researchers in the world can work on this puzzle and try to find the answer. The largest of the disease areas is cancer, and such research receives over £130 million each year.

Many tributes have been paid, and I want to pay tribute to my predecessor, my hon. Friend the Member for Winchester (Steve Brine), for the work he did in this space, particularly with the Tessa Jowell Brain Cancer Mission in 2018. The Government have announced £40 million of funding over the five years, including for DIPG. The money is being invested through NIHR, making full use of its talents as an internationally recognised centre of research excellence. At the heart of the mission is translating the discoveries of scientists and doctors into treatments and diagnostics that can transform the lives of all young patients.

We know that research takes time. It is through heart-breaking experience that brain tumours give us one of the most persistent challenges, even for the greatest medical minds in this country and across the globe. We want researchers to submit high-quality research proposals in this area. In 2018, we made an appeal to the research community for more funding applications for brain tumours. The response was fantastic, with an immediate increase in proposals, and we have been able to fund the very best of them. As the hon. Member for Nottingham North (Alex Norris) alluded to, £5.7 million has been spent so far, but we need to make that appeal loudly and clearly so that the research proposals that come forward can be assessed.

One of the challenges of ring-fencing just for DIPG is about the scientific potential of the research and what we are looking at. When we ring-fence funding, sometimes it actually stops great research. Although I want to go full pelt behind intensification—I want more proposals to come forward—the challenge of ring-fencing is a difficult one.

Research has been a major part of covid, as many hon. Members have said. We have shown that we can do more, that we can speed up research, that we can do things in parallel, and that we can deliver speedily from the bench to the bed to the patient. We need to take every one of the lessons that we have learned from the pandemic and translate them, particularly into cancer research.

We know well that cancer in children presents unique challenges. The Royal Marsden’s biomedical research centre is a world-leading centre for children with cancer that does genuinely groundbreaking research, such as the work to develop a 91-gene panel test that can detect certain genomic mutations in childhood tumours. The study used next-generation sequencing and involved children whose tumours were no longer responding to treatment; we have heard about the limited treatment options available to parents.

The study found that 51% of tumours had mutations that could be targeted by anti-cancer drugs that are used for different tumours in adults—51% is really encouraging. That is the challenge of ring-fencing funding in a different area, however: we need to look at how we can use different treatments to target other cancers, as we are seeing more and more. We need to make the most of that. For example, drugs that are ordinarily used to treat skin cancer in an adult might be effective in treating a child’s brain tumour. That could clearly be a game changer.

The Royal Marsden is also a leader in DIPG research. As we know, DIPG is difficult to treat because it is comprised of multiple generations of different types of cancer cell. The biomedical research centre’s pioneering work has used genetic sequencing of individual cell types to explore how they interact, co-operate and stimulate the growth of that tumour. That opens up new avenues for the interpretation of tumour evolution and opportunities for new drug interventions. All that groundbreaking work is transforming how we think about childhood cancers, with powerful technologies that offer hope for future generations. What unites us all is that we never want to see parents go through that pain if we can work towards a solution to stop it. We are determined that the biomedical research centre at the Royal Marsden should remain a home for groundbreaking research. Since 2017, we have provided £43 million over five years.

The University of Nottingham is another such centre of excellence and the National Institute for Health Research is funding research there to look at the early diagnosis of childhood cancers. Early diagnosis is crucial across all cancer types. We know that we get much better outcomes when we diagnose in stages 1 and 2, rather than being presented with stages 3 or 4 when, obviously, the prognosis is much poorer. This represents a potential pathway that might avoid the painful journey that lies ahead.

In Nottingham, researchers are looking at cancer symptoms that are often non-specific and can mimic other more common childhood illnesses. We heard from many hon. Members how an initial tremor in the hand, a dragging of the leg or feeling unwell would perhaps not immediately be thought of as cancer in a child. Doctors do their best, but parents do not want every visit to the doctor to be a worry that their child has cancer. It is very difficult for those who diagnose. The research in Nottingham aims to address that challenge by increasing awareness of symptoms among healthcare professionals and addressing the lack of paediatric-specific diagnostic tools.

I say in answer to several hon. Members that the Department is working with charities large and small, such as Cancer Research UK and other medical charities, and Cancer52 and the smaller charities, as well as with many research bodies, including the Medical Research Council and others. Only by co-ordinating funding can National Cancer Research Institute partners maximise the impact of research for patients and the public. I pay tribute to those centres of excellence, but this journey is not theirs alone. We are seeing an ever more powerful network of partnerships and likeminded organisations that care passionately about brain tumours. In addition to the Tessa Jowell Brain Cancer Mission, we work with Cancer Research UK and many others. For example, in partnership with CRUK, the NIHR has funded £1.2 million for an experimental cancer medicine centre and a paediatric network, which brings together triallists, scientists, clinicians and NHS research infrastructure to increase availability and access to novel treatments. Several Members spoke of the challenge of having to go abroad to America or Europe to access those treatments. We want people to be able to take part in trials and access treatments here.

The Brain Tumour Charity does incredible work and provides £2.8 million of funding for the study of more targeted brain tumour drugs. The fantastic Tessa Jowell BRAIN MATRIX is pioneering a new trials platform to give people with brain cancer, including children, access to trials and treatments that are best suited to individual tumours. There are many hundreds, if not thousands, of different cancers. The Tessa Jowell BRAIN MATRIX is working across the four nations, and across the globe. Nobody has the sole right to make the discovery. Working together, we are much stronger. We are all here to make sure we deliver for young patients.

I pay tribute to the incredible partners across the country for the effort that is going into this generational challenge. I also pay tribute to the charities for their additional work in supporting families. When a person gets a cancer diagnosis, that is a horrendous journey. It is awful as an adult, but worse when it is someone’s child—my heart goes out to all those parents.

No child should have to suffer in the way the children we have heard about today did and do, and no adult should have to bear such a loss. Fiona and everyone else who has lost a very loved child or grandchild before their time have my deepest sympathy and respect. As we have heard, that is often not enough, so they have my absolute commitment that the Government will stop at nothing to make childhood cancer a thing of the past for generations to come.

We will look at getting better data. Transparency can be a challenge, because it is obviously important that we do not divulge too much about an individual patient. I have talked about the challenge with ring-fencing, but that does not mean that we should not be spending the money and calling for more research. We will also incentivise research, and I am happy to carry on the conversation about a UK strategy.

We will stop at nothing to make childhood cancer a thing of the past for generations to come. We will achieve that only through research, and we will do it better together.

Tonia Antoniazzi Portrait Tonia Antoniazzi
- Hansard - Excerpts

I thank the Minister for her positive response. As chair of the APPG on cancer, I welcome it, and so do Members across the Chamber, especially my hon. Friend the Member for Easington (Grahame Morris), who works very hard alongside me. I thank the Minister on behalf of Fiona Govan and all the petitioners. We will continue to hold her to account. I thank all hon. Members for their contributions.

Question put and agreed to.


That this House has considered e-petition 300027, relating to research into childhood cancers.

Sitting suspended.

Government Response

Tuesday 24th March 2020

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. This includes funding for childhood brain tumour research.

We know that a cancer diagnosis is devastating to families. That is why cancer survival is our priority made clear in the NHS Long Term Plan.

To ensure better outcomes for those affected by cancer we must focus our efforts on innovative research, and into new methods of diagnosis and treatment.

That is why we have invested £1bn per year in health research through the National Institute for Health Research (NIHR). NIHR cancer research expenditure has risen from £101 million in 2010/11 to £132 million in 2018/19, the largest investment in a disease area.

Tessa Jowell Brain Cancer Mission (TJBCM)
In May 2018 the Government announced £40 million over five years for brain tumour research as part of the TJBCM. This includes funding for childhood cancers research and diffuse intrinsic pontine glioma.

Funding will be invested through the NIHR to support a wide range of research from early translation (experimental medicine), through clinical, and on to applied health and care research. In essence this will support the translation of laboratory discoveries into treatments and better care for patients, including children.

The Department is working actively as part of the TJBCM to improve research and care for people with brain cancer. We welcome the launch of the Tessa Jowell BRAIN MATRIX. This is an exciting new trials platform that will give people with brain cancer, including children, access to trials of treatments that are best-suited to their individual tumours. The Brain Tumour Charity is providing £2.8 million research funding for the study, which will enable doctors to treat brain tumours with drugs that are more targeted than ever before.

Together with NHS England, NHS Improvement and the National Cancer Research Institute, the Department joined the Less Survivable Cancers Taskforce recent research roundtable event to consider how the number of high-quality research applications can be increased for these difficult-to-treat cancers.

As with other Government funders of health research, the NIHR does not generally allocate funding for specific disease areas. The level of research spend in a particular area, such as childhood cancers and diffuse intrinsic pontine glioma, is driven by factors including scientific potential and the number and scale of successful funding applications.

Experimental Cancer Medicine Centres (ECMCs)
The UK Health Departments and Cancer Research UK are jointly funding a network of eighteen ECMCs across the UK, investing a total of £36m in the third five-year period (2017-2022). This includes a Paediatric ECMC Network dedicated to early phase research on childhood cancers.

Cancer trials and studies
The NIHR Clinical Research Network has over 800 cancer trials and studies recruiting or in set-up. Through the Network, the proportion of patients entering cancer clinical trials and studies is more than double that in any other country for which data exists, including the United States

Biomedical Research Centre (BRC)
The NIHR is funding and supporting a range of research for children with neuroblastoma. For example: the NIHR Great Ormond Street BRC is researching the use of imaging to assess the efficacy of induction chemotherapy for high-risk neuroblastoma; the NIHR Newcastle Biomedical Research Centre is studying the genetic profiles of high risk neuroblastomas to provide predictive and prognostic biomarkers for current and future targeted therapies; and the NIHR Royal Marsden Biomedical Research Centre is developing preclinical models of neuroblastoma and childhood soft tissue sarcoma cells for the development of target-driven drug treatment.

In September 2016 the Secretary of State for Health announced an £816 million investment in 20 NIHR Biomedical Research Centres for 5 years from April 2017. This funding includes the NIHR Royal Marsden/Institute of Cancer Research BRC which will focus exclusively on cancer research and will receive £43 million over five years from April 2017. Five other BRCs will have dedicated cancer research themes. The funding amount for cancer research over 5 years across all BRCs is an estimated £131 million

The NIHR is committed to the involvement, engagement and participation of children and young people in research, supporting researchers and funders, as well as empowering children and young people to lead their own journey with research.

The NIHR have many children and young people initiatives ongoing, such as:

Raising awareness e.g. some Local Clinical Research Networks have set up Children and Young People's Forums to engage them in raising awareness of health research among their peers

Contributing to feedback. In 2018/19 over 900 children and young people (11% of respondents) gave feedback about their experience of participating in clinical research through the NIHR Research Participant Experience Survey

Department of Health and Social Care

Constituency Data

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