Childhood Cancer Outcomes

Caroline Dinenage Excerpts

Tuesday 26th April 2022 Commons Chamber

[Dame Caroline Dinenage (Gosport) (Con)]

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?

The most overwhelming concern is around diagnosis. Early detection is the next frontier in adult cancer and for children it is even more vital, yet for so many children that diagnosis comes far, far too late. Sophie had suffered for a few months with tummy problems. The GP first suggested Gaviscon and then that it could be irritable bowel syndrome, but when Sophie started bleeding her very worried mum was advised that she might have started her periods. Sophie had just turned nine. By the time her worried parents took her to accident and emergency, the paediatrician found a 12 cm tumour in her little tummy.

Sophie’s story is not unusual. Over 53% of childhood cancers are picked up through A&E rather than through primary care, compared to 22% of adult cancers. In terms of diagnosing advanced cancer, as a nation we rank near the bottom of the European league tables. There is little or no training for general practice and let me reiterate that we are talking about the biggest killer of children under the age of 14. There are also no national referral guidelines for GPs with concerns that a young person may have cancer. A local GP from Gosport, who has practised for over 30 years, told me that he has no specific training on childhood cancer and would readily attend any training available. The Government are investing in 100 new diagnostic centres, but there must be robust referral guidelines in place, specifically regarding children, to help ensure that that improves the diagnosis of paediatric cancers.

The game changer would be paediatricians in primary care, which so many other countries have. Until then, we need childhood cancer training for healthcare professionals. We need national referral guidelines specifically for children, and we need an education campaign for parents on the signs and symptoms of childhood cancer. I know that is not straightforward. There are 88 types of childhood cancer with various symptoms, but we only need look at the success of the training and publicity surrounding the signs and symptoms of meningitis, which has seen numbers fall, with 461 cases of meningitis last year and 30 deaths. It is time to do the same with childhood cancer.

[Hilary Benn (Leeds Central) (Lab)]

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.

[Dame Caroline Dinenage]

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.

[John Lamont (Berwickshire, Roxburgh and Selkirk) (Con)]

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?

[Dame Caroline Dinenage]

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?

There is no doubt that research investment drives survival rates. Since 1960, the survival rate for childhood leukaemia has improved from 10% to 80%. By contrast, only two multinational clinical trials have ever taken place for rhabdomyosarcoma. With only 60 cases diagnosed in the UK per year, there is very little scientific evidence or appetite to develop and complete clinical trials. It is of no interest to big pharma. So we need to look much more imaginatively at how the National Institute for Health and Care Research can encourage more research in such types of cancer.

We also need to look at how new treatments can be brought forward much more quickly. I met Kevin and Karen, who lost their son Christopher just days before his sixth birthday from an aggressive form of brain tumour. They raised concerns about the EU paediatric regulations, which they feel are outdated and do not reflect the latest technological advances. Now that we have left the EU, we have the opportunity to produce new legislation that will incentivise world-leading pharmaceutical products, especially for children, and we need to take that opportunity.

Today, I ask the Minister to start a children’s cancer mission. We have seen from the incredible work on brain cancer inspired by our much-loved former colleague Tessa Jowell how much progress can be made when we are galvanised to bring together the best of Governments, charities, research, academics, medical and science into centres of excellence.

[Steve Brine (Winchester) (Con)]

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?

[Dame Caroline Dinenage]

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?

[Several hon. Members rose—]

--- Later in debate ---

[Dame Caroline Dinenage]

I thank all hon. Members from both sides of the House who have supported this debate. In some cases, they have shared their own experiences and, in other cases, they have shared the incredibly sad and touching stories of their constituents. Other hon. Members wanted to be here to raise their own cases, including my hon. Friend the Member for Moray (Douglas Ross), who wanted to talk about Abbie’s Sparkle Foundation.

The stories have been incredibly difficult to listen to, but as hard as they are to hear, they are infinitely harder to go through. Families up and down the country who have been supporting children with cancer go through that every single day. I would like this debate to be a tribute to those children. The hon. Member for North Antrim (Ian Paisley) said that we have to be the voice of the voiceless, which is what we are all here for. It is not enough to pay tribute or say that we have listened. Actions speak louder than words.

The Government’s 10-year plan for cancer is a once-in-a-generation opportunity to move the dial on children’s cancer outcomes. It is a chance to shine a spotlight on this often devalued and much neglected area of medical research. The Minister talked about the research that is ongoing, but it is nowhere near the research that is going on in many other forms of cancer. It is a Cinderella and a backwater of research, which is not good enough.

The 10-year plan is a chance to introduce the mission on childhood cancer, which could really make a difference and save lives in future. It is a chance to introduce Sophie’s mission, Rayhan’s mission, Ebony’s mission, River’s mission, Alice’s mission—a mission for every single child whom we have heard about today and all the others yet to come. We have to stop failing children like this.

Question put and agreed to.

Resolved,

That this House has considered childhood cancer outcomes.

[Mr Deputy Speaker (Mr Nigel Evans)]

We will pause momentarily while hon. Members leave the Chamber.