The ODN workplan has mainly evolved out of the core benchmarking work, informing areas of improvement including:
Service Specifications
The Teenage and Young Adult (TYA) Cancer ODN, plays a central role in supporting providers to meet and sustain the standards required for PTCs and Designated Hospitals (DHs), recognising that a skilled, confident, and appropriately trained workforce is fundamental to deliver effective specialist TYA care. Commissioned by NHS England, the ODN has led a review of TYA cancer services across the network to promote equitable, age appropriate care.
The ODN has worked with the clinical teams at the DH’s to review compliance to national service specifications, developing Trust specific action plans against identified gaps and securing commitment to these from Trust executive teams and commissioners to drive improvement in TYA care across the network.
The ODN in partnership with the Cancer Alliance, support the clinical forums and regular team meetings, enabling a consistent governance and assurance structure, ensuring issues are escalated appropriately and progress against agreed actions monitored. This collaborative approach supports safe, high quality, and equitable specialist care for teenagers and young adults and strengthens the overall resilience of the network.
Workforce
Maintaining the TYA workforce across the Designated Hospitals to ensure clinical staff have the capacity to provide specialist TYA care and ensuring compliance with the Service Specifications remains an ongoing challenge. Many staff have no designated time for their TYA key roles and are doing this additionally to another busy clinical workload. The ODN is working with the providers at the PTC and DH’s, as well as with commissioners and third-party charities, such as the Teenage Cancer Trust, who provide funding for some TYA roles to improve the capacity and resilience of the TYA workforce. Further work to define and develop the TYA clinical nurse specialist (CNS) roles within Designated Hospitals is planned to support the workforce.
Education
The ODN delivers an annual TYA education and engagement event to bring together TYA expertise across the whole network work to provide an opportunity for peer support and education. The annual TYA education event focuses on topics that clinicians have highlighted as pertinent to clinical need such as sexual health and fertility.
Further work is planned to develop a network wide education strategy, identifying available TYA education and any gaps that need to be addressed.
Access to data
The ODN is developing a TYA cancer dashboard to support governance and oversight of network activity, identify areas for improvement and monitor outcomes and provision.
Fertility
Fertility preservation is a key part of high-quality TYA cancer care, ensuring young people at risk of treatment related infertility receive timely advice and access to preservation options, as well as supporting those with premature ovarian insufficiency.
The ODN is supporting the development of network referral guidance to align with national pathways and work with providers to ensure these are embedded into local policies. Work is underway to scope and develop network approved patient information for fertility preservation to support consistency and standardisation across providers. This will ensure that TYA patients receive accurate, accessible, and age-appropriate information, regardless of where they are treated, supporting informed decision making at a highly sensitive time.
In addition, the network will scope and report variation in fertility storage arrangements, including length of storage, associated costs, and access to cryopreservation for eggs, embryos, and sperm samples. Understanding current variation will provide an evidence base to inform future improvement work, support equitable access, and strengthen advocacy with commissioners and fertility providers to reduce unwarranted differences in provision and long-term support for survivors.
Aftercare and late effects
Aftercare and managing late effects are core to TYA cancer care, recognising the long-term physical, psychological, and social impact of treatment during a key developmental stage. Young people face ongoing or delayed effects that can impact on health, wellbeing, education, work, relationships, and fertility. Teenagers and young adults need clear age-appropriate information skills and guidance to understand what to expect and when to seek further advice.
Effective aftercare relies on coordinated, age-appropriate specialist input, with timely surveillance, proactive management of late effects, and clear transition pathways. By embedding personalised follow up, holistic needs assessment, and access to specialist expertise, the network aims to support long term health, quality of life, and independence for young people living beyond cancer. The ODN works closely with PTCs to strengthen aftercare across the network.
Wider provider led improvement work supported by the ODN includes:
- Improving availability and access to clinical trials
- Increasing access to whole genome sequencing and bio banking and developing clear pathways for patients to access this care
- Improving equality of access to palliative care provision
