A focus on children and young people in the National Cancer Plan – TJBCM’s response

A focus on children and young people in the National Cancer Plan – TJBCM’s response

By Beccy Weir (Senior Programme Manager) and Andrew Wright (Senior Programme and Policy Manager)

Children and young people with cancer, for the first time, have been given a dedicated chapter in the government’s new National Cancer Plan for England. This is a significant moment recognising that the treatments, needs and experiences of children differ from those of adults.

Here, we explore what this new plan means for children with a brain tumour, using insights from both our Centre of Excellence for Children and Paediatric Academy programmes. We also share what TJBCM is doing to support its implementation.

A timely focus on paediatric brain tumours in national policy

Brain tumours are the largest group of solid tumours affecting children¹. As well as being the largest cancer killer of people under the age of 40, brain tumours have an impact that often extends far beyond treatment. Survivors may experience neurological and cognitive impairment, endocrine complications, physical disability, challenges returning to school and daily life, and long-term psychological and social effects, all of which can be life-changing and at times life-limiting^2,3.

For the first time, the 2026 National Cancer Plan for England includes a dedicated section on children and young people’s (CYP) cancer, setting priorities to reduce health inequalities under 4 key elements: early detection and diagnosis, genomic testing and novel treatments, research and innovation and experience of care⁴.  Many of the challenges and service gaps highlighted in the Plan align with those identified in our 2025 report “Towards Excellence”, which highlighted the need for coordinated national action to improve diagnosis, quality-of-life care and long-term support for children with a brain tumour.

The Plan includes 12 Action Statements for CYP, of which seven are already aligned to the Mission’s work. Crucially, the Plan highlights the need for quality data collection and the development of a comprehensive evidence base of long-term outcomes and survivorship. The Tessa Jowell Centre of Excellence for Children is a national benchmarking and peer review programme collecting service-level data across NHS neuro-oncology centres. Our expert committee regularly updates the Standards of Excellence to reflect evolving best practice and the priorities set out in the Plan. By continuing to collect robust service-level data, the programme can help drive targeted improvements in paediatric brain tumour care and support monitoring of the Plan’s implementation and impact.

Figure 1: Summary of the National Cancer Plan’s outline for the future of what NHS services should be offering paediatric neuro-oncology patients⁴.

The Mission’s support for key commitments from the National Cancer Plan

1. Faster access to specialist diagnostics and genomic testing

What our data shows: Prompt diagnosis is critical for children with brain tumours, where delays can affect both survival and long-term quality of life. At the same time, diagnosis is getting more precise, with whole genome sequencing (WGS) offering access to treatments and clinical trials targeted to a patient’s specific genetic makeup. Yet while WGS should be available on the NHS for all children with cancer, TJBCM’s data shows variation in delivery. Only 40% of paediatric neuro-oncology centres were able to return results within 42 days, and families reported uncertainty about how genomic testing may influence treatment decisions⁵.

What the Plan promises: To address these challenges, the National Cancer Plan commits to faster specialist diagnostics for children, including paediatric radiology review of suspected cancers, improved access to diagnostic services, and strengthened genomic pathways, ensuring every patient who needs it can access WGS⁴.

How the Mission is supporting: Through the Tessa Jowell Centre of Excellence for Children programme, we will continue monitoring access to WGS and evaluating whether the Plan’s commitments lead to faster and more equitable care across centres, identifying barriers to implementation as they emerge.

2. Improving the experience of staying in hospital

What our data shows: Children and young people need hospital environments that support emotional wellbeing as well as treatment. Play services and age-appropriate support can make a major difference to a child or teenager’s experience of care and help provide kinder treatments. However, more than half of patients reported limited or no access to play support, and around a third of centres lack dedicated Teenage and Young Adult (TYA) units or specialist support workers⁵.

What the Plan promises: To address these challenges, the National Cancer Plan includes commitments to improve play and youth services, support family travel costs, and ensure earlier referral of 16–24-year-olds to TYA multidisciplinary teams⁴.

How the Mission is supporting: We are aligning the updated Standards of Excellence with national initiatives such as the Play Well toolkit⁶ and will continue supporting centres to strengthen play provision and improve tailored support for teenagers and young adults.

3. Strengthening rehabilitation, psychological support and survivorship care

What our data shows: The impact of a brain tumour often continues long after treatment ends, making rehabilitation, psychological support and survivorship care essential to helping children achieve the best possible quality of life^7,8,9,10,11.  Yet our data highlights significant gaps in care. Many centres face shortages in specialist rehabilitation staff, leading patients to rely on community services who may lack both the time and training to address their complex needs⁵. Waiting times for neuropsychology range from five to 52 weeks, and up to a third of centres cannot provide structured psychological follow-up⁵. Long-term support for “late effects” ¹², side effects that may come months or years after treatment has finished, was also inconsistent with significant gaps⁵.

What the Plan promises: The Plan promises more consistent psychological support, surveillance for late effects, and dedicated neurorehabilitation keyworkers and recovery plans for every child with a CNS tumour⁴.

How the Mission is supporting: TJBCM is supporting professionals through the Tessa Jowell Academy for Paediatrics, including training in neuro-oncology and supportive care, while the Academy rehabilitation network is developing projects to help standardise support across centres. Continued benchmarking through the Centre of Excellence programme will help track how the Plan improves care for children and families.

4. Building a more collaborative research environment and improving access to trials

What our data shows: Clinical trials offer, for many children with a brain tumour, the best hope for accessing potentially life-saving treatments. Yet our data shows that trial access remains variable. A major barrier running more trials in more centres, as identified by our data, is the lack of clinical staff—particularly research nurses—alongside limited capacity in supporting services such as psychology, ophthalmology and radiotherapy⁵. Where a patient lives, and what tumour they have, can impact whether they have any trial opportunities.

What the Plan promises: The National Cancer Plan commits to stronger national coordination of research, increased collaboration across charities, academia and industry, and improved access to trials by optimising staffing to improve capacity⁴.

How the Mission is supporting: Through the Brain Tumour Research Novel Therapeutics Accelerator programme (funded by Brain Tumour Research), TJBCM supports researchers to move promising therapies towards clinical trials. We will also continue working with clinicians and policymakers to identify workforce and infrastructure barriers that prevent children from accessing research opportunities.

The Mission’s Partners are also already actively working to deliver better care for children with a brain tumour

The Plan reiterates what we already know from working with our Partners, that charities dedicated to rare cancers, such as brain tumours, already provide expert support and advice to patients through their wealth of expertise and experience. The charities’ efforts in funding research, fellowships, specialist resources and policy work complement and enhance the provisions within the Plan, in addition to the vital support they provide to children with brain tumours and their families.

Looking ahead

As always with national plans of this ambition and scale, it is how the commitments are translated into deliverables over the coming months and years that will have the biggest impact on patients. This will require coordinated efforts, a clear understanding of the practicalities and barriers to implementation, and cooperation from all stakeholders to be successful. By working with clinicians, policymakers, researchers and charities, we at the TJBCM can help ensure that the ambitions of the National Cancer Plan translate into meaningful improvements for children with brain tumours and their families.

References

1. CCLG: The Children & Young People’s Cancer Association. Children and young people’s cancer in numbers [Internet]. Leicester: CCLG; [accessed 2026 Mar 27]. Available from: https://www.cclg.org.uk/about-cancer/cancer-children-and-young-people/children-and-young-peoples-cancer-numbers
2. Pancaldi A, Pugliese M, Migliozzi C, Blom J, Cellini M, Iughetti L. Neuropsychological outcomes of children treated for brain tumors. Children (Basel). 2023;10(3):472. doi:10.3390/children10030472.
3. Stavinoha PL, Trinh-Wong T, Rodriguez LN, Stewart CM, Frost K. Educational pain points for pediatric brain tumor survivors: review of risks and remedies. Children (Basel). 2021;8(12):1125. doi:10.3390/children8121125.
4. Department of Health and Social Care, NHS England. The National Cancer Plan for England: delivering world class cancer care [Internet]. London: Department of Health and Social Care; 2026 [accessed 2026 Mar 27]. Available from: https://assets.publishing.service.gov.uk/media/699ec931532c9ad91ebbcc64/national-cancer-plan-for-england-delivering-world-class-cancer-care.pdf
5. Tessa Jowell Brain Cancer Mission. Towards excellence: building a better future for children with a brain tumour. London: Tessa Jowell Brain Cancer Mission; 2025 [accessed 2026 Apr 27]. Available from: https://www.tessajowellbraincancermission.org/wp-content/uploads/2025/12/TJ-CoE-for-Children-Report-2025.pdf
6. NHS Play Well toolkit [Internet]. London: Starlight; 2025 [accessed 2026 Apr 27]. Available from: https://www.starlight.org.uk/toolkit
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8. Dietz JH. Adaptive rehabilitation in cancer: a program to improve quality of survival. Postgrad Med. 1980 Jul;68(1):145–7, 150–1, 153.
9. Noll KR, Bradshaw ME, Rexer J, Wefel JS. Neuropsychological Practice in the Oncology Setting. Arch Clin Neuropsychol. 2018 Apr 26;33(3):344–53.
10. Kasteler R, Fuchs P, Otth M, Scheinemann K. Interventions to improve neurocognitive late-effects in pediatric and adolescent CNS tumor patients and survivors – a systematic review. Front Oncol [Internet]. 2023 May 2 [accessed 2025 Mar 20];13. Available from: https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2023.1150166/full
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