Childhood Cancers: Research — [David Mundell in the Chair]

Part of the debate – in Westminster Hall at 4:43 pm on 7th December 2020.

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Photo of Chris Evans Chris Evans Labour/Co-operative, Islwyn 4:43 pm, 7th December 2020

I thank my hon. Friend 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.