Childhood Cancer Outcomes

Debate between Caroline Dinenage and Hilary Benn

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.