Background: Neuroendocrine neoplasms (NENs), include a diverse group of rare neuroendocrine cancers that have increased in incidence in England, by 371%, over the last 3 decades. Prevalence has also risen, with NENs now the 10th most prevalent malignancy in England. Despite this increase, awareness remains low, even amongst healthcare professionals, and patients face significant inequities throughout the entire care pathway, from presentation to follow on care. The average time to diagnosis is 4 years, with less than 17% diagnosed at Stage 1. Despite this exponential increase, there is no inclusion in cancer referral (NG12) guidance and no nationally agreed pathway for appropriately directed onward referral, compounding pre-existing barriers.
Methods: Throughout 2022, Neuroendocrine Cancer UK (NCUK), working with The Health Policy Partnership, collaborated with patients, patient advocates, clinicians, NHS and industry representatives to develop an ideal care pathway for people diagnosed with NEN. Development aims were to address the persistent challenges and inequities in NEN diagnosis and disease management. Multi-stakeholder consultation, alongside shared patient experience and a non-systematic literature review was undertaken to facilitate an analysis of existing services and national plans. A Steering Group was established to collate and provide clear evidence and recommendations for decision-makers. A nation-specific pathway was developed to address unique requirements, we aim for future research to adapt the work to Scotland, Northern Ireland and Wales.
Results: The final draft was completed in May 2023 endorsed by multi-stakeholder members, professional societies and associated organisations. National initiatives, such as utilisation of the Non-Specific Symptom Pathway, and associated infrastructure, could potential help close the current gap between presentation and diagnosis. Designed to align with these NHS goals, initiatives and programmes, the Neuroendocrine Cancer: An Ideal Pathway was launched, at Parliament on June 14th 2023.
Conclusion: Achieving goals in any healthcare system, often requires innovative solutions. Through collaboration, this pathway has been developed to provide specific workable recommendations, that can be adapted and incorporated into existing NHS initiatives, supporting staff and services to reduce inequities for Englands 10th most prevalent cancer population.We acknowledge and thank our expert advisory group The Ideal Pathway Report is available at https://www.neuroendocrinecancer.org.uk/campaigns/nc-pathway/