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03
October
2024

All-Party Group on Cancer Discusses Cancer in Children and Young People

By Emily Bishko 0

To mark Childhood Cancer Awareness Month, the All-Party Group on Cancer of the Northern Ireland Assembly met on the 17th of September 2024 to discuss Cancer in Children and Young People. It was the first APG meeting of the 2024-2025 Assembly year.

The APG featured a collaborative presentation from Children and Young People (CYP)-focused charities on the Northern Ireland Cancer Charities Coalition: Young Lives Vs Cancer, the Children’s Cancer Unit Charity, Teenage Cancer Trust, and Cancer Fund for Children, with additional support from the Friends of the Cancer Centre. The NI Department of Health attended the meeting and provided supplementary material.

After outlining the current children and young people’s cancer landscape in Northern Ireland, the charities highlighted three areas where significant challenges face children and young people with cancer: clinical trials, travel costs, and mental health.

The charities called for urgent action to improve the availability and accessibility of clinical trials for young cancer patients, streamline approval processes, and remove barriers that prevent trial participation. They also advocated for the establishment of a Young Cancer Patient Travel Fund and the introduction of free hospital parking for children, adolescents and young adults with cancer, and their families, to alleviate the financial burden of travelling for treatment. Furthermore, they emphasized the need for timely and comprehensive psychological support, aligning with the commitments outlined in Action 42 of the Northern Ireland Cancer Strategy. Ultimately, they stressed that full funding and implementation of the Northern Ireland Cancer Strategy is essential to meet the needs of children and young people facing cancer.

Some key takeaways from the discussion were:

  • There are significant delays around children’s clinical trial access in Northern Ireland, as a result of pathway and workforce challenges.
  • 71% of families impacted by cancer in CYP are struggling to meet travel costs, with 1 in 10 reporting missing or delaying treatments due to these financial pressures.
  • Charities in Northern Ireland offer comprehensive psychosocial support for children and young people with cancer, as well as their siblings and parents. This support includes vital opportunities for peer connection. However, as with the support services for adults impacted by cancer, the contribution of these essential services and their long-term funding model requires attention.
  • Charities provide significant funding and resource for the NI Adolescent and Young Adult (AYA) cancer services team, including AYA Clinical Nurse Specialists, social workers, and support workers. These posts are funded by Cancer Fund for Children, Young Lives Vs Cancer, Teenage Cancer Trust, Children’s Cancer Unit Charity, and Friends of the Cancer Centre.

 Additional facts highlighted include:

  • Cancer is the biggest killer by disease of children, adolescents, and young adults (CAYA) in the UK.
  • Every year in NI, ~60 children (patients aged 0-14) and ~75 adolescents and young adults (patients aged 15-24) are diagnosed with cancer. These populations face distinct treatment and support needs, both from each other and from adults facing cancer (with legal adults aged 18-24 critically still needing AYA-oriented support). The long-term impact of cancer on these patients’ lives and families is also distinct.
  • Excluding non-melanoma skin cancers, the most common cancer types faced by CAYA (leukaemias, lymphomas, brain and spinal cord, germ cell tumours, and skin) are largely different from the most common cancer types faced by adults (breast, prostate, lung, and bowel). There is also less that can be done to prevent common CAYA cancers, as they are less likely to develop as a result of modifiable environmental and lifestyle factors.
  • Research by Young Lives vs Cancer has shown that on average, CAYA cancer patients travel twice as far and spend twice as much as adult patients to receive cancer treatment. This is impacted by NI’s only specialist treatment centre (PTC) being in Belfast and by the nature of cancer treatment in CAYA, which requires them to travel frequently over many months or years. Additionally, this research revealed that nearly a third of CAYA patients have to travel outside of NI for treatment.
  • Charities provide accommodation for families undergoing CAYA cancer treatments to ease the travel burden and help keep families together. Charities also provide retreats and critical therapeutic support services to address a range of psycho-oncological needs.
  • CAYA with cancer in NI can are entitled to clinical trial opportunities in other nations of the UK and the Republic of Ireland, depending on what open trial is relevant to their cancer. However, blockages to trial access exist, leading to missed opportunities.

Reflecting on the APG, Emily Bishko, Policy & Public Affairs Officer at Cancer Focus Northern Ireland and APG Secretariat, comments: “We are glad to have been able to start this APG ‘season’ with a discussion on Cancer in Children and Young People, especially in light of Childhood Cancer Awareness Month. It is extremely frustrating to hear that children in NI face avoidable blockages to clinical trial access, especially when these blocks don’t exist elsewhere in the UK. That, plus the reminders of the additional financial and psycho-social challenges that cancer can bring, go to show how much more we need to do to first ensure our services are delivering effective and efficient care, and then second to ensure that we are not leaving NI’s cancer patients behind. We are encouraged to hear MLAs take note of these issues and to already see Ministerial questions being raised.”

Cancer Focus Northern Ireland serves as the Secretariat of the All-Party Group on Cancer, which is chaired by MLA Stewart Dickson. Learn more about the APG here.

People in front of interior stairs at Stormont

The speakers at the APG on Cancer meeting with the APG Chair and Secretariat. From left to right: Sinead Lynch (Children’s Cancer Unit Charity), Emily Bishko (Cancer Focus Northern Ireland and APG Secretariat), Lauren Marks (Young Lives Vs Cancer), Stewart Dickson MLA (APG Chair), Helen Patterson (Cancer Fund for Children), Andrew Reynolds (Young Lives Vs Cancer), and Ana Wilkinson (Friends of the Cancer Centre). Daral Williams from the Teenage Cancer Trust (not pictured) presented at the APG virtually.

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