Childhood Cancer Outcomes

Emma Lewell-Buck Excerpts

Tuesday 17th October 2023 Commons Chamber

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

Thank you, Sir Roger, for granting me this important Adjournment debate following September’s Childhood Cancer Awareness Month.

I know that many of us have experienced the suffering of a loved one with cancer, but there are very few of us who have had to endure the unimaginable pain of seeing your child suffer with cancer and, worse, losing a child to cancer. Yet cancer remains the leading cause of death by disease in children and young people, with 490 cancer deaths in the UK each year. That is 490 lives lost and families forever changed. The lack of a bespoke, stand-alone children’s cancer strategy leaves those children with aggressive cancers even more vulnerable.

In the short time I have this evening, I want to focus my comments on a little boy, a “tough cookie” from South Shields called Ethan Adams. Ethan attended the dentist with toothache in November 2020. The dentist treated him for a tooth infection, but Ethan was still not right, so he and his family returned to the dentist and Ethan was given some antibiotics. A week later, he developed a lump on the roof of his mouth. The dentist thought that this was an abscess because of infection and removed his tooth, but Ethan continued to be unwell. He was referred to an oral specialist at Sunderland Royal Hospital and, after an emergency MRI, the family were told that it was a benign tumour and to expect a follow-up call in a few weeks from the Royal Victoria Infirmary in Newcastle.

The very next day, the family received an urgent call asking them to head to the accident and emergency department as soon as possible. That is when the worlds of his mam and dad, Tracey and Mark, crashed. They were told that Ethan had an aggressive cancer and that it was eating up through his skull and pressing against his brain. Ethan was diagnosed with rhabdomyosarcoma, often referred to as RMS. A large tumour was present in his face, pushing through on to his brain. A large tumour was also found attached to his spine and traces were visible in his lungs and bone marrow.

His family were given a glimmer of hope when they were told that Ethan’s diagnosis was embryonal RMS, the lesser of two evils, and that the medics could shrink the tumours, but they were not sure that they could stop it coming back due to the aggressive nature of the cancer. Little Ethan had 32 days solid of chemotherapy and radiotherapy. He did not complain once. After going through so much, the family felt hopeful for a good result, but after an MRI they received the heart-breaking news that the cancer was buried in layers of his brain and it was terminal.

The family made sure that Ethan spent his final days carrying out his bucket list of all the places that he wanted to see and all the things that he wanted to do. This very determined independent little boy, even at his weakest and when losing his sight, would insist on climbing the stairs at home instead of being carried. On 5 August 2021, just a week after his ninth birthday, Ethan passed away at home, with his mam Tracey, his dad Mark, his sister Ellie and his brother Evan.

Ethan loved Yoda, Sunderland football club and the colour gold. He loved entertaining people and was a mischievous and funny kid with a big heart. Even when unwell in hospital, he was found sharing his toys and helping another little boy. He was all about friends and family, and talked about being a daddy himself one day. His school, Harton Primary, has named a sports hall after him and has buddy benches in each yard. His grave, which his brother calls his forever home, has on it “Ethan, a friend to all”. Ethan left a hole not just in his family’s and friends’ lives, but in our community. South Shields will never forget him.

Ethan’s family, in an effort to ensure that no one else ever has to go through what Ethan did, have become part of the charity Alice’s Arc, founded in memory of Alice Wakeling, who lost her life to RMS aged seven. The charity has created a community of families through Arcs. Alice’s Arc, Ethan’s Arc and all the other Arcs represent children who have had or are fighting RMS. The Arcs exist to find a cure, to find kinder treatments for RMS and to raise awareness. However, I gently say to the Minister that they should not need to exist; such charities exist because the state has failed them, and it continues at times to fail these children. As Mark said, it should not be left to charities to fund research.

The hon. Member for Gosport (Dame Caroline Dinenage) held the first ever debate on childhood cancer in this Chamber back in April 2022. I pay tribute to her and all hon. Friends and Members who took part in that debate. It was a rare moment of this House coming together, regardless of politics, in unanimous agreement that there needs to be a children’s cancer strategy combining early diagnosis, research funding and increased training for GPs and healthcare professionals.

[Mark Tami (Alyn and Deeside) (Lab)]

rose—

[Jim Shannon (Strangford) (DUP)]

rose—

[Mrs Lewell-Buck]

I will give way to my right hon. Friend first.

[Mark Tami]

I am a parent who was told the devastating news that my son had leukaemia, and he subsequently had to have a stem cell transplant. It is devastating news. Fortunately, we were lucky, but something I have campaigned strongly on is the fact that we address the physical side of the illness, but not the psychological support that those children need, and that they might need in later life as well. We need a more rounded approach. People should not have to go out there and seek that support as something extra; it should be part of the overall treatment path.

[Mrs Lewell-Buck]

I thank my right hon. Friend. I know he has spoken movingly before in this Chamber about his son Max. He is right that, for those who are lucky enough to recover from cancer, there is always an after-effect; it remains with them for life and there should be more support. I give way to my other hon. Friend.

[Jim Shannon]

I commend the hon. Lady on bringing this debate forward. Her constituents should be very proud of their MP and how she has illustrated and put forward the case on behalf of one of her constituents. She has referred to others having big hearts, but I think she has a heart the size of an elephant, if that is possible.

Estimates suggest that around 75% of children diagnosed with cancer survive. However, that statistic has not seen an increase in many years. Does the hon. Lady agree that the 25% who do not survive must never be accepted as a statistic, but must be fought for with more funding and greater research resources, exactly as the right hon. Member for Alyn and Deeside (Mark Tami) has said, and that those must be put in place as a matter of form and not just granted for one or two years? I know that the Minister will respond in a positive fashion, and I commend the hon. Lady on what she is doing.

[Mrs Lewell-Buck]

I thank the hon. Gentleman for that very kind intervention. He has pre-empted what I will talk about later in my speech.

The Under-Secretary of State for Health and Social Care, the hon. Member for Lewes (Maria Caulfield), in responding to the debate last year, said that GPs had access to training and that National Institute for Health and Care Excellence

“guidelines are trying to support GPs”.—[Official Report, 26 April 2022; Vol. 712, c. 656.]

However, having access to training is not the same as mandated training, and NICE guidelines are for all cancers. It is widely known that many signs and symptoms of childhood cancer are the same as those for many common childhood illnesses, and that the types of cancer diagnosed in children are different from those seen in adults. In short, those guidelines are not enough.

The Under-Secretary of State also said that, despite some progress in treatment for childhood cancers, for

“conditions, such as rhabdomyosarcoma, that is not yet the case. Research is crucial to how we deal with it in the long term.”—[Official Report, 26 April 2022; Vol. 712, c. 658.]

Yet no breakdown is available for how much funding is directly linked to childhood cancer research, let alone RMS. What we do know is that funding for research of all cancers has dropped from £132 million in 2018-19 to £101 million in 2021-22, and that Great Ormond Street hospital has found that, on average, only 2p of every £1 spent each year on cancer research goes towards dedicated research projects for childhood cancers.

So here we are, over a year later, and it appears that nothing has improved. The Government’s change in approach to their cancer plan has not been welcome either. In February 2022, the Government launched their call for evidence for a standalone 10-year cancer plan for England, which was intended to be a new vision for how we will lead the world in cancer care. Yet in January this year, they announced that cancer would be incorporated into a new major conditions strategy, effectively scrapping the dedicated 10-year cancer plan. As Cancer Research UK said:

“by bundling in cancer alongside other conditions via a short-term strategy, ministers will fail to give cancer the due care and attention it requires… Cancer isn’t a single disease…in medicine it’s one of the hardest problems to solve and scientific discovery takes time… Ultimately, beating cancer requires a long-term approach.”

The Children’s Cancer and Leukaemia Group and Young Lives vs Cancer rightly note that this strategy will not give sufficient attention to children with cancer, and are asking the Government to commit to a children and young people’s 10-year cancer plan addressing diagnosis, treatment, patient experience, research, psychosocial support and living beyond cancer. The Royal College of Radiologists, which represents specialist paediatric radiologists and clinical oncologists, has said that after years of under-investment, the workforce is stretched and shortages are causing backlog and delay.

Access to paediatric radiologists already depends on postcode. In the north-east, there are 0.2 consultants per 100,000 people, compared with 0.7 per 100,000 in London. It takes seven years to train in this specialty, and as a percentage of specialists are due to retire, I am not sure that the Government’s workforce plan will sufficiently address the shortfall in those paediatric specialties. International comparisons show that the countries with the biggest improvements in cancer survival are those with long-term, adequately funded cancer plans. Every single parent who has lived in this painful cancer bubble knows what works, too: proper training, early diagnosis, research and access to treatment.

[Carla Lockhart (Upper Bann) (DUP)]

I commend the hon. Lady for her speech. Ethan really sounds like an amazing little boy whose memory will live on, as we have heard tonight. He reminds me of a little boy called Adam in my constituency, who will also be forever in our memory after losing his battle to childhood cancer. His mum and dad, Sara and David, are fighting not only for what the hon. Lady is fighting for, but for financial support for families in the initial weeks after diagnosis—currently, children have to wait three months to receive disability living allowance. Does she not think that the Government should introduce immediate payment for families whose children’s care needs start immediately?

[Mrs Lewell-Buck]

I thank the hon. Member for her intervention. My heart goes out to her constituents, and I could not agree more with what she suggests.

This remarkable little boy had his future taken from him, and without a robust and long-term plan from the Government, other children’s lives will be lost to this terrible disease. I know that the Minister is a decent man and that he does care and will want to give some words of comfort to my constituents, but we would like to know from him what progress, if any, has been made since last year’s debate and how, against the backdrop of decreased funding for research, a dwindling workforce and limited training, he believes cancer outcomes for children will improve. As Ethan’s parents said,

“We shouldn’t be putting children through this… Children deserve to be invested in, they deserve a future”.

I am sure we can all agree that little Ethan definitely did deserve a future.

[The Minister for Health and Secondary Care (Will Quince)]

I thank the hon. Member for South Shields (Mrs Lewell-Buck) for securing this important debate. I begin by sending my sincerest support and sympathy to Ethan’s family and every family involved in the work of Alice’s Arc. Their mission to find a cure and kinder treatment for rhabdomyosarcoma is one that I am sure the whole House can support.

As the hon. Lady rightly mentioned, September was Childhood Cancer Awareness Month, and I think I speak for the whole House when I say that our thoughts are with every family touched by childhood cancer, particularly those who have felt the bitter grief of losing a child. I commend the efforts of so many to bring light to the darkest of situations and support families in need, including the hon. Lady, who made such a powerful and emotive speech. I also join her in paying tribute to my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for her tireless efforts to improve childhood cancer care.

I want to assure the House and all families affected that cancer services for children are an absolute priority for this Government. Working alongside the NHS, we have three priorities to improve childhood cancer outcomes: improving early diagnosis, delivering more research and driving progress in genomic medicine. Let me take each one in turn.

First, improving early diagnosis will give more children the best chance of beating cancer. The NHS is working to deliver the ambition it set in its long-term plan to diagnose 75% of cancers at stages 1 and 2 by 2028. Achieving that will mean 55,000 more people surviving cancer for five years or more. That is why the Government are investing more than £2.3 billion to transform diagnostics services. Thanks to that investment, we have opened 123 new community diagnostic centres, giving millions of patients the chance to access quicker, more convenient checks outside of hospitals, and we are on track to open 160 CDCs by March 2025.

In this year’s operational planning guidance, NHS England announced £390 million of funding to cancer alliances in each of the next two years to support the operational priorities for cancer treatment capacity. That includes commissioning key services in early diagnosis and supporting systems to develop local cancer plans. We are now expanding direct access to diagnostic scans across all GP practices, helping GPs to recognise cancer symptoms, cutting waiting times and speeding up diagnosis.

Secondly, as the hon. Member for South Shields rightly pointed out, delivering more research is key to understanding the causes of cancer and increasing survival rates further. Over the past five years, the National Institute for Health and Care Research has invested almost £14 million in 38 research projects into childhood cancers. Alongside Cancer Research UK, health Departments across the UK are jointly funding a network of 18 experimental cancer medicine centres, collectively investing more than £35 million between 2017 and 2022.

Our world-leading scientists and clinicians are driving the discovery, development and testing of new treatments. That includes the paediatric network that the National Institute for Health and Care Research co-funds with the Little Princess Trust, which is dedicated to early-phase research on childhood cancers. NHS children’s cancer services are provided by highly specialist principal treatment centres that manage care through multidisciplinary teams across diagnosis, treatment and research, making research breakthroughs available to every child.

Turning to our work to drive progress in genomic medicine, the UK is a world leader in that sector, and cutting-edge research already benefits children with cancer. However, the Government are committed to going further: our priority is ensuring that all children with cancer get access to genomic medicine. The NHS now offers all children with cancer whole-genome sequencing to enable comprehensive and precise diagnosis, along with personalised treatments. In July this year, the Government announced a multi-year partnership agreement with the pharmaceutical giant BioNTech, which will accelerate that company’s clinical trials here in the UK and could provide up to 10,000 patients with personalised cancer immunotherapies by 2030. It will work with NHS England’s new cancer vaccine launchpad to improve access to treatments and trials. This Government will continue to support groundbreaking genomic medicine to give children with cancer the high-quality personalised treatments they deserve.

Children with cancer also deserve a supportive experience in hospital, as do their families. That is why I am pleased that NHS England is working with the Starlight Children’s Foundation charity to review and improve play facilities and guidance to hospital trusts, and we will learn from the first under-16 cancer patient experience survey. More than three quarters of children with cancer said they are looked after very well by healthcare staff, and almost 90% of parents or carers rated the care their child received as eight or more out of 10. That shows what our brilliant cancer workforce does so well, and also where we have more work to do.

Once again, I thank the hon. Member for South Shields for tabling this vitally important debate.

[Mrs Lewell-Buck]

I sense that the Minister is coming to the end of his comments. I have listened carefully to him, but he has largely referred to funding and research into cancers overall. He knows full well that childhood cancers are distinct from adult cancer, so could he offer us any clarity on how much money goes into childhood cancer research, and what the workforce plan is for those specialists working in paediatric cancer?

[Will Quince]

I am very happy to take both those questions. First, in relation to childhood cancer research specifically, my officials in the Department are working really closely with the National Institute for Health and Care Research to set up an expert roundtable on childhood cancer research. Many trials will be applicable to both adults and children, but by their nature, some will need to be childhood cancer-specific. I welcome that important initiative, which is designed to encourage more research into cancers affecting children.

The Government do not, in effect, commission research directly. Bids are made to NIHR; around £1 billion a year is spent directly on research through NIHR, but it is reliant on those bids. That is why it is so important that we get more bids for research into childhood cancer coming forward.