Supporting the

Neuroendocrine Cancer Community

Neuroendocrine cancer: an ideal patient care pathway: Addressing inequities in diagnosis, care, and support.

Jul 18, 2023

Neuroendocrine cancers, also known as neuroendocrine neoplasms (NENs), are a diverse group of cancers that have been increasing in incidence and prevalence in England, as well as across the UK and the world.

Developing a patient care pathway for neuroendocrine cancer can be challenging because the UK consists of four nations, each with its own NHS service. Each nation has its own dedicated cancer strategy, which is usually at different stages of development and implementation. For example, England now has a ‘Major Conditions Strategy’ that incorporates cancer, rather than a standalone cancer plan. Scotland, Wales, and Northern Ireland have recently published their own strategies and plans for cancer.

In order to devise an ideal pathway, it is important to recognise that one size does not fit all. We must acknowledge that a clear pathway can help address persistent challenges and inequities in NEN diagnosis and disease management. It can also provide evidence-based recommendations to decision-makers for improvement.

However, it is crucial to tailor the pathway to reflect and serve the population it is intended for and the healthcare system responsible for delivering care to that population. Each nation has its own context, including its population, diversity, health profile, funding, priorities, and unmet needs.

Neuroendocrine cancer: an ideal patient care pathway is just the start. This pathway has been designed closely with a multidisciplinary advisory group and aligns with NHS England’s Long-Term Plan goals. Its adaptability ensures that it remains relevant and implementable even if a cancer strategy changes.

Effective integration of this pathway within NHS England is a key priority to achieve optimal care provision for all people with NENs within existing expert multidisciplinary teams. The pathway serves as an empowering tool for those living with NENs, supporting them in seeking the right care, in the right place, at the right time. It also supports NHS England’s ambitions to improve faster, more accurate diagnosis and access to care.

While significant progress has been made, more work remains to be done. We need to see the pathway integrated throughout NHS England and in each of the UK’s four nations. Efforts are already underway to make this happen.

How you can get involved:

In England: https://www.neuroendocrinecancer.org.uk/campaigns/nc-pathway/ 

In Scotland, Wales, and Northern Ireland:

According to the Lancet, figures released by NHS England in September 2022 showed that only 64% of patients began definitive treatment within 62 days. Comparable figures for Scotland, Wales, and Northern Ireland were just 79%, 57%, and 42% respectively.

Current Plans and Strategies:
– Scotland: Cancer Strategy 2023-33 & Cancer Action Plan 2023-26
– Wales: Cancer Improvement Plan for NHS Wales 2023-26
– Northern Ireland: A Cancer Strategy for Northern Ireland 2022-32

Are you involved in any groups or initiatives dealing with cancer priorities in your nation? In all four nations, there are Patient & Public Involvement (PPI) Forums and/or surveys. For example, the Wales Cancer Network is currently undertaking a survey: “Meeting the needs of people affected by cancer and ‘Cancer Key Worker.'” We would love to hear from you, whether you are already involved at the local or national level or not.

We are interested in hearing about your experiences with the care pathway, what has helped or hindered your journey, and whether you think your national plan/strategy adequately addresses the needs of those with rare/less common cancers, such as Neuroendocrine Cancers. If you would like to be involved and/or share your experiences of care and/or Patient Involvement initiatives, please contact us using the provided email address, adding “Pathway Interest” as the email subject title – campaigns@nc-uk.org

Acknowledgments:
We would like to thank the expert advisory group for their help in developing the NHS England patient care pathway for neuroendocrine cancer.