Written evidence submitted by Teenage Cancer Trust
1.1. Teenage Cancer Trust is the only UK charity dedicated to meeting the specialist nursing, care and support needs of those with cancer aged 13-24-years-old. We are proud to fund 28 specialist units and have developed specially designed areas and facilities in designated NHS hospitals across the UK, along with expert nurses and youth support coordinators so that these young people can access age-appropriate care and support to help them through diagnosis, treatment, and beyond.
2.1. Teenage Cancer Trust welcomes the opportunity to respond to the Public Accounts Committee’s inquiry into ‘Integrated Care Systems’ to highlight some key questions we have about the transition. We would like the Committee to be aware of these questions and join us in seeking the answers to them. We have also highlighted these in our submission to the Health and Social Care Select Committee’s inquiry into ‘Integrated Care Systems’.
2.2. The delegation of specialised commissioning to ICBs means a new set of commissioners is responsible for delivering high quality care for young people living with cancer. It is vital that there is a thorough assessment of ICBs’ readiness to commission teenage and young adult (TYA) cancer services, with caution fully exercised in any circumstance where readiness is in doubt.
2.3. Given the changes to specialised commissioning, it is even more important than before to ensure that the new TYA cancer service specification is published so commissioners have access to the most up-to-date information on what ‘good’ looks like for these services. The children’s service specification was published in November 2021, and the continued delay in publishing the TYA one is having a detrimental impact on TYA cancer services.
2.4. It is important that the changes do not lead to a lack of accountability. At whatever level services are being commissioned providers need to be held to account for delivering high quality care in line with national standards, such as the children's and TYA service specifications, to prevent inequity.
2.5. There needs to be clarity on how all organisations, that have a role in delivering high quality TYA cancer care at a local level, can work together effectively – including commissioners, providers, and clinical networks. In particular, there is a need for clarity on the role of Operational Delivery Networks within the new system, with ICBs that are commissioning specialised services recognising the role they have to play in delivering high quality TYA cancer services. To help this there needs to be clarity on their future funding, and more consistency in their function and quality, to prevent inequality in service provision.
3.1. Teenagers and Young Adults (TYA) with cancer
3.1.1. In 13-24-year-olds, on average 2,397 cases were diagnosed annually between 2013-2015 (Public Health England, 2018) and since the early 1990s, incidence rates for cancers in young people have increased by more than a quarter (28%) in the UK.
3.1.2. Cancer is the leading cause of illness-related death in this age group.
3.1.3. Young people with cancer have a specific set of psychological, psychosocial, social and physical needs which differ from children and older adults, which can exist for decades after treatment has ceased.
3.1.4. There are also many unique characteristics of cancer and patient experience in this age group that may influence outcomes including distinct cancer biology, delays in diagnosis, low involvement in clinical trials, and high risk of long-term and late effects of treatment on physical and mental health.
3.1.5. For reference, the most common cancers in teenagers and young adults (in order of incidence) are: Lymphoma; Germ cell tumours Ovarian cancer; Testicular cancer; Skin cancer; Brain & spinal cord; Leukaemia; Soft tissue sarcoma; Thyroid cancer; Bone cancer; Cervical cancer.
3.2. TYA cancer services and specialised commissioning
3.2.1. At present all specialised services – including children’s and young people’s cancer services – are commissioned by NHS England (NHSE/I). However, this will change from April 2023 when Integrated Care Boards (ICBs) will take on responsibility for some specialised commissioning.
3.2.2. NHSE England has recently published a ‘roadmap’ for specialised commissioning setting out more details on this process. In this document it proposes that children’s and TYA cancer are some of the services that will be delegated to ICBs from April 2023.
3.2.3. The roadmap also states that national standards, in the form of service specifications will remain the responsibility of NHS England, with ICBs expected to commission against the standards set in them.
3.2.4. Overall, we agree with the premise of this document, however it is vital that there is a thorough assessment of ICBs’ readiness to commission TYA cancer services, with caution fully exercised in any circumstance where readiness is in doubt.
4.1. As set out above, the roadmap document highlights that there will be an expectation that ICBs commission against standards set out in service specifications.
4.2. According to NHS/I: “Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.”
4.3. To help facilitate this all the service specifications are set to be revised to make them more outcomes focused and easy for commissioners to use.
4.4. It is important that any plan to revise service specifications does not further delay the publication of the draft TYA cancer service specification. The children’s cancer service specification was published in November 2021, and we are still awaiting publication of the TYA cancer specification. We are increasingly concerned that the continued delay is having a detrimental effect on cancer services for teenagers and young adults, for the following reasons:
4.4.1. The lack of a TYA service specification stalls planning and making of key decisions throughout the NHS including in ODNs and Cancer Alliances.
4.4.2. It delays the implementation of the recommendations of the Cancer Taskforce and the NHS Long Term Plan.
4.4.3. It leaves our charities without a framework to engage with commissioners and providers on key issues such as clinical trials and biobanking.
4.4.4. It also risks undermining leverage gained in previous work undertaken to improve the delivery of TYA cancer services.
4.5. The roadmap document states that clinical reference groups (CRGs) will continue to provide clinical leadership and support the development of service specifications. Given the continued role that the Children and Young Peoples CRG has in providing clinical leadership it is important that this has strong and balanced representation from those with expertise in TYA cancer, including young people themselves.
5.1. It is important that the changes being brought about as a result of the Health and Care Act 2022, such as the delegation of commissioning responsibilities (including specialised commissioning) to ICBs, do not lead to a lack of accountability. It is important that at whatever level services are being commissioned providers are being held accountable for delivering high quality care in line with service specifications, to prevent inequity.
5.2. We believe there is a role for central performance indicators, in enabling greater accountability and to ensure equity of provision. For specialised services this is included in the draft service specification and is reflected on a dashboard for data collection which started in April of this year. It is therefore vital that the service specification is published, and that there is transparency in relation to how different ICSs are performing against the targets in it, as well as action to address underperformance.
5.3. In light of this, it is vital that responsibility for commissioning TYA cancer services is only delegated to ICBs if they are sufficiently prepared to do it.
6.1. It is vital that all organisations across the system work together on a local level. Teenagers and young adults receive care in a variety of settings including more specialist Principal Treatment Centres and TYA Designated Hospitals. The move of commissioning to ICBs means a new set of commissioners is responsible for delivering high quality care for young people living with cancer.
6.2. These organisations include Operational Delivery Networks (ODNs), which are in the process of being established for TYA cancer services to support the delivery of care. They already exist for other areas where services are specially commissioned including neonatal care and hepatitis C. They will have a key role in supporting the effective delivery of the revised service specification.
6.3. According to NHSE/I the role of ODNs is to: “ensure outcomes and quality standards are improved and evidence based, and networked patient pathways are agreed. They will focus on an operational role, supporting the activity of Provider Trusts in service delivery, improvement and delivery of a commissioned pathway, with a key focus on the quality and equity of access to service provision.”
6.4. There needs to be clarity on how all organisations, that have a role in delivering high quality TYA cancer care at a local level, can work together effectively – including commissioners, providers, and clinical networks. In particular, there is a need for clarity on what ODNs role is in the new system, with ICBs that are commissioning specialised services recognising the role they have to play in delivering high quality TYA cancer services. To help this there needs to be clarity on their future funding, and more consistency in their function and quality, to prevent inequality in service provision.
7.1. In light of the above, Teenage Cancer Trust invites the committee to consider the following questions:
7.1.1. Is there more detail on how NHSE will hold ICBs to account on commissioning TYA services?
7.1.2. What will be the key factors in determining readiness of ICBs to commission TYA cancer services in April 2023?
7.1.3. How will the clinical leadership from the CYP CRG impact the commissioning of ICBs in practice?
7.1.4. What action will be taken if commissioning processes are not up to scratch?
7.1.5. What is the timeline for renewing specifications, and will this delay the publication of the TYA service specification further?
7.1.6. How will Operational Delivery Networks be funded in the future? How will the quality of ODNs be monitored?
7.1.7. How will effective collaboration between all organisations at a local level involved in providing, commissioning, or supporting the delivery of TYA cancer services be encouraged and supported?
 Public Health England & Teenage Cancer Trust (2018), ‘13-24 year olds with cancer in England
Incidence, mortality and survival’, via https://www.ncin.org.uk/view?rid=3852 Accessed on 13 August 2021.
 Cancer Research UK, ‘Cancer statistics for the United Kingdom’, via https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/young-peoples-cancers Accessed 13 August 2021.
 Public Health England & Teenage Cancer Trust (2018)
 Teenage Cancer Trust (2016), ‘The Blueprint of Care: for teenagers and young
adults with cancer’ Second Edition, 27, via https://www.teenagecancertrust.org/sites/default/files/BlueprintOfCare_2ndEdition.pdf, accessed on 9 August 2021.
 Yi Feng Wen et al., (2021), ‘The global, regional, and national burden of cancer among adolescents and young adults in 204 countries and territories, 1990–2019: a population-based study’, in Journal of Hematology & Oncology 14:89, 2, via https://jhoonline.biomedcentral.com/articles/10.1186/s13045-021-01093-3 , accessed on 19 August 2021.
 UK Health Security Agency (2021), Cancer in children and young people – what do the statistics tell us?’ via https://ukhsa.blog.gov.uk/2021/03/15/cancer-in-children-and-young-people-what-do-the-statistics-tell-us/ accessed on 1 April 2022.
 NHSE/I (May 2022), ‘Roadmap for integrating specialised services within Integrated Care Systems’, via https://www.england.nhs.uk/wp-content/uploads/2022/05/PAR1440-specialised-commissioning-roadmap-addendum-may-2022.pdf Accessed on 29 July 2022.
 NHSE/I, ‘Service Specifications’, via https://www.england.nhs.uk/specialised-commissioning-document-library/service-specifications/ Accessed on 29 July 2022.
 NHSE/I (2019), ‘Service Specification: Teenage and Young Adult Cancer Networks - Principal Treatment Centres’, via https://www.engage.england.nhs.uk/consultation/teenager-and-young-adults-cancer-services/user_uploads/service-specification-tya-principal-treatment-centres-and-networks.pdf Accessed on 29 July 2022.
 NHSE/I (Dec 2012), ‘Developing Operational Delivery Networks: The Way Forward’, via https://www.england.nhs.uk/wp-content/uploads/2012/12/develop-odns.pdf Accessed on 29 July 2022.