Childhood Cancer Outcomes

I beg to move,

That this House has considered improving outcomes for childhood cancer.

I am grateful to the Backbench Business Committee for allowing us this debate, and to all the medical professionals, scientists, charities and, above all, the bereaved parents who have helped to inform it.

This debate is in honour of Sophie Fairall. Sophie was just 10 years old when she died last September, 12 months after having been diagnosed with a very aggressive form of cancer, rhabdomyosarcoma. During her illness, Sophie created a bucket list. It included lots of fabulous things. She wanted a pair of high heels and she wanted to cook with Gordon Ramsay. But Sophie’s list was very special, because she also wished for improvements in the way we look after others who were in the same position that she was. She wanted better play facilities for children in hospital wards. From her bed she painted ceramics, which were sold to raise £6,000 to buy new toys for her ward. Most hospitals only have play specialists at very limited hours. No data is even collected on the numbers of play specialists working in the NHS. So, on Sophie’s behalf, I ask the Minister to look at the provision of play specialists.

Sophie also wanted better hospital food for poorly children. She was worried about the parents who spent hours at the bedside and often did not get to eat at all. Often during her own treatment Sophie felt poorly at set mealtimes. Later, when she was feeling a bit better, there was no capability at the hospital to make her anything to eat. That is little surprise, because in Portsmouth hospitals the meals get sent from Wales, 200 miles away. In October 2020, following a review led by Prue Leith, the Government launched a new blueprint for hospital food. Can the Minister provide an update on how that work is progressing and how they plan to ensure nutritious, child-friendly food that can be delivered flexibly during children’s treatment in hospital?

After Sophie’s death, her fantastic mother, Charlotte, vowed to continue to highlight all the failings and missed opportunities she experienced in how we research, detect, treat and care for children with cancer, and how we improve cancer outcomes. Charlotte Fairall is here today and I pay tribute to her determination and devotion to that cause. [Hon. Members: “Hear, hear.”] I want to start with a spoiler alert for the Minister. Today, I am going to be asking for a new childhood cancer mission, a concerted effort to bring together the very best in research, genomics, training, treatment, philanthropy, medical and allied health professionals, the brightest and the best, to really change our approach to childhood cancer once and for all.

Childhood cancer is often referred to as rare, but it is the biggest killer of children under the age of 14. In this age group, there are around 1,800 new cancer cases every year. One in 320 people will be diagnosed with cancer before their 20th birthday, and 12 children and young people diagnosed every single day in the UK. How can that be described as rare?

I congratulate the hon. Lady and colleagues on securing this debate. She is making an outstanding case. One of the cancers that affects children is brain cancer. If we take glioblastoma, the five-year survival rate for children is only 20%. I am sure she recognises that not only do we need improved diagnosis—the point she is making—but more research. That is what the Tessa Jowell Brain Cancer Mission is about: more research to understand the make-up of those cancers, so we have more effective treatment and more children may survive.

The right hon. Gentleman is absolutely right. I shall talk about research in a moment, but childhood cancer research is currently the Cinderella of cancer research and we need to do much more to address that.

Once a child has been diagnosed, the gruelling process of treating the cancer begins. Between 1997 and 2018, only 18 new drugs were approved for 22 paediatric oncology indications, and they were generally for quite specific or relapse cases. That means many children are often given the same treatments as adults—incredibly aggressive chemotherapies and radiotherapies—and in many cases children’s treatments have not changed for decades. Even if the cancer is beaten, the child’s body is often so ravaged by the treatment as to leave long-term impacts from which they may never recover.

My hon. Friend is speaking remarkably passionately about this important issue, about which many of my constituents have been in touch with me. They include Julie and her son George, and Leah and her son Toby—both children are suffering and living with cancer. Does my hon. Friend agree that much more needs to be done when children finish the course of treatment to support not only the child but the family, in terms of their recovery from the physical and emotional impact of the treatment?

My hon. Friend makes an excellent point: there is such a huge impact on families who support a child through cancer and we need to look at how we support them in the round.

I have heard from parents of children who are known as cancer free—so they are probably counted as a success statistically—yet some of them are still in hospital because of the disastrous impact of the treatment itself. Very many survivors are left with long-term hormone deficiencies, some of which are life threatening. Survivors can also experience neurological, behavioural, cognitive and visual impairment. The St Jude Hospital in the United States takes an annual survey of former patients. By the age of 50, they all—100% of them—have life-altering health issues, from fertility issues to severe neuro-disability. I would love to know whether similar surveys happen here and whether the conclusions are the same.

As other Members have said, it is vital to find better treatments specifically for children, which means better research is vital. Children’s cancer is fundamentally different from adult cancer in that so much of it is developmental rather than environmental. The good news is that progress is within our reach—there is so much potential in immunotherapy and genomics—and the even better news is that the UK has a fantastic research community and the most comprehensive database of childhood cancer genomes anywhere in the world. The bad news is that paediatric oncology research is the absolute backwater of cancer sciences. It does not have the focus, the money, the public relations or the prestige of other forms of research. Until there is a concerted effort to change that, children like Sophie will be failed.

I expect the Minister to tell me today that great progress has been made on the cancer survival rate among children. Seventy years ago, children simply did not recover or survive a cancer diagnosis; now around 80% do. But the figures belie the fact that for many cancers, including the rhabdomyosarcoma that killed Sophie, the survival rate is as low as 20%. For another cancer, DIPG—diffuse intrinsic pontine glioma, which is a form of brain tumour—the survival rate is 0%. It is literally a death sentence. Can you imagine being that child? Can you imagine being that parent?

My hon. Friend is speaking beautifully and powerfully, as always. When the late Baroness Jowell came to see us at the Department of Health, we got the clear impression that she would not take no for an answer. She recognised that although research funding was important, the thesis around which the research proposals were then taken forward was the key. She galvanised the brain cancer and tumour charities into bringing that forward, and that has revolutionised the number of proposals on which they conduct research. Does my hon. Friend agree that we need to do that across the board in cancer, but specifically in paediatric oncology?

My hon. Friend makes an excellent point. I know that, as a former Minister responsible for this issue, he cares about it deeply. I want to bring everybody together in centres of excellence to make sure that we can galvanise everything to that point. I assure my hon. Friend that we will not take no for an answer either.

I am keen for the Government to look at progress in the Netherlands, where the Princess Máxima Centre for paediatric oncology has brought together the care for children and their families, scientific research, and an academy for health professionals, all under one roof, along with a foundation. The centre has a mission: to cure every child with cancer with optimal quality of life. The Government’s 10-year plan for cancer is a once-in-a-generation opportunity to move the dial on cancer outcomes. Will the Minister agree, as part of that work, to look at a children’s cancer mission? Will she bring together a working group of paediatric oncologists, charities, parents and young cancer survivors to formulate a plan to drive forward the work on how we detect, treat and care for children with cancer?

Order. I am sure colleagues will understand that, as this is a two-hour debate, I will have to set a time limit. I shall start with a four-minute limit, of which I have advised the first speakers.

Leukaemia is the most common cancer in children. For most, the treatment will be chemotherapy and, more recently, the use of targeted therapies such as CAR-T. The treatment will take place over a number of years and there will be many bumps in the road in what is a very difficult journey.

I will never forget the phone call from my wife 15 years ago telling me that our nine-year-old son had leukaemia. For us, it soon became clear that the only route open to us would be a stem cell transplant. We were very fortunate that we found a donor for our son, but far too many children—particularly those from non-white backgrounds—are still not as lucky. There have been great improvements in recent years, but a lot more work still needs to be done.

The transplant process is not easy, involving radiotherapy and isolation to try to avoid infection as the immune system is so weakened, and then there are the post-transplant effects which, in the worst cases, can involve graft versus host disease, which can kill the patient, as well as infertility, premature menopause, fatigue, muscle problems, a higher chance of secondary cancers—I could go on.

We are making medical advancements, and some of the treatment is now far less severe than it was those 15 years ago. But that is the physical side of the illness; what of the psychological issues that children who have had cancer treatment will almost certainly face? About three-and-a-half years ago, I had a debate in this Chamber on this very subject, highlighting what I thought were the problems. Regrettably, those problems are still there today and, with covid, have arguably got worse.

A constituent of mine, Richard Case, lost his son Cian two years ago. Two years ago, I had a debate in this Chamber—the hon. Member for Winchester (Steve Brine) responded for the Government—on international research for children with childhood rare cancers, and looking at how the G7 and the G20 could focus on global research and innovation in tackling childhood cancers. Progress has been limited. Does my right hon. Friend agree that it is time that finding cures for childhood cancers was a global research priority?

I agree, and I think that vital work needs to be carried out now.

Fundamentally, psychological support should not be an add-on. It is not something that we should have to seek or press for our children to receive; it should be part and parcel of the overall treatment programme. For many people, it is about coming to terms not only with the treatment, but with the fear that the illness could come back again. That is a hell of a pressure to be put on a young person.

Young people may also find it difficult to talk to their own families about some of these issues and the concerns they have. That is why professional counsellors and clinical nurse specialists can play an important role in this respect. Reintroduction into school, for example, can be a traumatic experience for young cancer patients, as well as for their classmates, because they might look very different from when they left the school. I remember a young girl telling me that the worst part of what had happened to her was not the treatment, but the fact that she lost her hair—coming to terms with that is very difficult.

On that point, will the right hon. Gentleman take this opportunity to congratulate the Little Princess Trust, which takes donations of hair to create wigs for children? Quite often, it is other children who donate their hair to make those wigs. It is a great charity, and I hope that many people will acknowledge it.

I agree. It is so important to help young people feel as normal—if we can use that word—as possible. I have always been struck by how important the hair issue, and having fit-for-purpose wigs, is to girls in particular—in some circumstances the wigs are not very good.

As has already been touched on, support should be available for family members of young cancer sufferers. I remember when everyone would phone up all the time and ask how my eldest son was, but no one would ask how his younger brother was. They were not being mean; it was just that their focus was on that child. During the whole treatment process, there is a financial cost to travelling to and from a specialist centre, and for some the choice is between employment or caring for their child. That is the choice that a lot of people have to make, so there are enormous pressures there. I found it particularly helpful to speak to a nurse from CLIC Sargent—now known as Young Lives vs Cancer—who would come round to give my son his treatment. She understood how you felt, and it was good to have an honest discussion with her about some of the issues you were facing.

I think we need to place psychological support on an equal footing with addressing the physical treatment of childhood cancers, with equal access to support, not as an afterthought or an add-on, but as part and parcel of the process, from diagnosis to dealing with the long-term effects.

I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for her work in securing the debate. I pay tribute to the right hon. Member for Alyn and Deeside (Mark Tami) for sharing his personal insight into the situation with the House. This subject is incredibly important, and I know that we will hear further contributions from Members across the House, emphasising that the issue affects us far and wide across the country and in the communities that we represent, and highlighting once again how devastating cancer can be.

Cancer is a horrible disease. Of course, we all know the statistic of one in two people suffering some form of cancer during their lifetimes. We would be hard pressed to find anyone in this House who has not been affected by that devastating and cruel illness in one way or another. It is that much more devastating and cruel when it makes a child poorly.

I was recently contacted by my constituent Laura, who explained the impact that cancer had had on her family. I have the privilege, with Laura’s permission, to say a few words about how this terrible disease has affected her and her whole family. Laura had a daughter called Ebony. Many people in Scunthorpe will know Ebony and her story. In 2016, just before Ebony’s 10th birthday, the family noticed that she had a swelling on her arm. As many of us would, they assumed that she had perhaps had a bump in the playground and that it would get better, but unfortunately it did not. After a trip to the GP, Ebony and her mum went to a Sheffield hospital, where she saw a specialist and had a scan, and they heard the terrible news that no parent ever wants to hear: that Ebony had cancer. I cannot imagine how that felt, and I know hon. Members on both sides of the House share that.

The cancer Ebony had was rhabdomyosarcoma, a rare type of cancer that can affect soft tissue. It can affect anyone of any age but, sadly, it most often affects children, and the form she had was particularly aggressive. Of course, Ebony underwent treatment, which was horrendous for her and horrendous for her family. Despite the fact that that was very difficult, Laura tells me that she remained a very special and caring girl all the way through her treatment. She remained brave even when her hair fell out.

I did not have the opportunity to meet Ebony, but it is clear that she was a remarkable person. She got to ring the bell twice after her rounds of chemotherapy were complete. While she was undergoing treatment, one source of joy for Ebony and her family was that she was going to be a big sister. She was so excited that she could not wait to meet her little sister and even picked out a name, Ella. In September 2019, the family were given the news that the cancer had returned and had spread to Ebony’s abdomen. She made the decision not to continue treatment and she passed away on 24 January 2020.