Childhood Cancer Outcomes

Helen Hayes Excerpts

Tuesday 26th April 2022 Commons Chamber

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this very important debate. My constituent, Emma, contacted me about the experience of her family, when her 17-year-old daughter, Ruby, became ill with T-cell lymphoma, an aggressive form of blood cancer. Ruby passed away in May 2020 aged just 18. I am speaking today for Ruby; for my constituent, Helena, who is currently going through cancer treatment, whose mum Katherine has been in touch; and for every other family in Dulwich and West Norwood facing a diagnosis of childhood cancer.

Ruby and her family really struggled to get a diagnosis after she became ill. She had six GP visits, while her family became increasingly concerned, before a GP referred her for the hospital tests that revealed that she had a 9 cm tumour in her chest. By the third GP visit, Emma had googled Ruby’s symptoms—a very swollen face, shoulder pain, tiredness and odd bruising to her abdomen—and she asked the GP whether Ruby could have a cancerous tumour obstructing her vena cava. She was told, “Not in one so young”, and was made to feel that she was an over-anxious parent, but that is exactly what Ruby had. It took three further GP appointments before she was referred for tests.

Ruby’s family now live with the additional pain of knowing that an earlier diagnosis might have saved her, and they are calling for better training for GPs in spotting cancer in children and young people and better practice in listening to and taking seriously parents’ concerns. Improvements in both those areas would increase early diagnosis, with life-saving consequences.

Ruby had 10 months of gruelling cancer treatment, and her mum highlights the lack of funding for research or progress in developing new treatments. The drugs used to treat Ruby’s cancer were approved in the 1950s, 1960s and 1980s. They have terrible side effects and long-lasting health consequences for children who survive their cancer.

Ruby’s family also highlight the impact that a childhood cancer diagnosis has on the wider family and the lack of support that is available. One parent often has to give up work and the average estimated additional costs associated with supporting cancer treatment are £600 a month.

Ruby was a remarkable young woman. She believed that the most important thing in the world was to be kind and to speak out against injustice and unkindness. Her motto was, “Live Kindly, Live Loudly”, and her family are seeking to keep Ruby’s memory alive by raising £500,000—roughly what the NHS spent on treating Ruby’s cancer—for the Children’s Cancer and Leukaemia Group. I recognise and encourage that vital and inspirational work. However, I also call on the Government to recognise the avoidable suffering that families such as Ruby’s face when a precious child or young person receives a cancer diagnosis, and to commit to the change that is needed—better training, more research and additional support for children and their families—to ease their suffering at this most difficult of times.

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[Neale Hanvey (Kirkcaldy and Cowdenbeath) (Alba)]

I pay tribute to the hon. Member for Gosport (Dame Caroline Dinenage) for securing this enormously important debate, and to the right hon. Member for Alyn and Deeside (Mark Tami) for his very moving personal account.

My observations are based on a lifetime working in NHS cancer care and on having led the first Teenage Cancer Trust unit at the Middlesex Hospital for a period of time—this was the world in which I existed. I hope that the Minister will pay attention to some of my observations from that career, because I think they will be useful in informing policy.

I agree that there is a need for an overarching strategy, but some of the problems discussed today are perennial; they have been there forever, and there really needs to be a concerted effort to address them. Unfortunately, some of them cannot just be solved with money. In addressing diagnosis, treatment and ultimately outcomes and survivorship, we need to think about why diagnosis is delayed, about why diseases are considered to be rare and about the ultimate impact on outcomes for children and young people. The reason for many late diagnoses is that most GPs never see a case of childhood cancer, let alone cancer in an adolescent, so the effort that goes into raising awareness and training may seem misplaced, given how rare an occurrence it is.

The other challenge is that many of the symptoms with which children present are things that GPs see day in, day out. Fevers, lumps and bumps, lethargy, pains in the tummy—all those symptoms are standard fare, so it is very difficult to cut through to the truth and identify types of cancer. The essential thing is a greater emphasis on driving awareness. It has to be a core part of any differential diagnosis when examining a child that there is always a chance that they have something much more sinister than a cough, cold or fever. It is about making sure that that is built into standard practice.

Another point that I would like to make, although I may run out of time, is that these diseases are incredibly rare. Because the subsets are so rare, it is very difficult to do longitudinal studies.

[Helen Hayes]

The hon. Member speaks about the rarity of these diseases. Will he join me in recognising, as other hon. Members have done today, the work on brain cancer that is being done in the name of my predecessor Baroness Tessa Jowell? It provides a model for a children’s cancer mission to bring together expertise in the area.

[Neale Hanvey]

I thank the hon. Lady for that intervention. I agree: there has been an enormous amount of work across a range of disease profiles, and I want very swiftly to name some of the key people with whom I have had the great pleasure to work in my time. Professor Jeremy Whelan has done a huge amount of work on soft tissue sarcomas and bone tumours, and Professor Andy Pearson from the Royal Marsden Hospital has done a huge amount of work as well. I also want to mention all the members of the multidisciplinary teams who make that kind of research and progress viable.

Let me finally say something about the bigger picture. Cancer does not exist in a bubble; it exists in the social fabric of where we live, and people with cancer, particularly children, are not immune to challenges such as the cost of living crisis. If we want to do a robust piece of work in order to make progress, it must involve research and treatment, but it must also improve the life chances of children more generally.