Patient care pathway for neuroendocrine cancer

HPP collaborated with Neuroendocrine Cancer UK to develop an ideal patient care pathway for people living with neuroendocrine cancer in England.

nurse and patient holding hands reassuring


Neuroendocrine cancers represent the tenth most prevalent type of cancer in England. However, people with neuroendocrine cancer currently face significant inequities throughout the entire care pathway – from suspected cancer to follow-up care.

The variation in symptoms and disease presentation makes the diagnosis and management of neuroendocrine cancer complex. Additional challenges that affect care provision include low disease awareness among healthcare professionals and the public, delays in diagnosis, barriers in access to appropriate treatments and, crucially, the absence of a national care pathway. As a result, neuroendocrine cancer is usually diagnosed at a late stage, when care is expensive and often less effective.

A standardised patient care pathway is essential to support progress towards optimal care provision for people with neuroendocrine cancer in England. Action must be taken now to ensure that people living with neuroendocrine cancer can benefit from the ambitions of the UK Rare Diseases Framework, the NHS Long Term Plan and the forthcoming Major Conditions Strategy.

Project resources

What we’ve achieved

Neuroendocrine Cancer UK (NCUK) and The Health Policy Partnership (HPP) collaborated with patients, patient advocates, clinicians and industry representatives to develop an ideal care pathway for people with neuroendocrine cancer in England. The care pathway and associated report are evidence-based and consensus-driven, informed by a rigorous review of the literature, extensive consultation with an expert advisory group and numerous interviews with a range of stakeholders.

Neuroendocrine cancer: an ideal patient care pathway provides clear evidence and recommendations to decision-makers on areas for improvement. It aims to reduce the burden of these cancers in England and to support people with neuroendocrine cancer in seeking the right care, in the right place, at the right time.

NCUK and HPP also jointly organised an event ‘Neuroendocrine cancer: a ready-made solution to put patients first’ at the UK Parliament in June 2023. This event brought together people with lived experience, clinicians and MPs to introduce the widely endorsed care pathway and demonstrate the importance of, and next steps for, integration within NHS England practice. Following the event there will be continued conversations to accelerate the uptake of the care pathway to support earlier diagnosis, help standardise care, reduce the cost burden to the health system, and ensure that people with neuroendocrine cancer benefit from ongoing initiatives to improve cancer care across the UK.

Key partners and stakeholders

This project was developed in collaboration with Neuroendocrine Cancer UK.

All endorsements of Neuroendocrine cancer: an ideal patient care pathway can be found on the NCUK website.

The expert advisory group to the project:

  • Dr Vivienne Beckett – Global Patient Advocacy and Communications Lead, Prostate and Rare Diseases, Advanced Accelerators Applications (AAA), a Novartis Company
  • Catherine Bouvier Ellis – CEO, Neuroendocrine Cancer UK
  • Philippa Hand – Macmillan Senior Nurse Cancer Services, London North West University Healthcare NHS Trust
  • Dr Kate Higgs – Medical Manager in Oncology, Ipsen
  • Nikie Jervis – Patient Engagement, Education and Policy Lead, Neuroendocrine Cancer UK
  • Matthew Keeling – Transformation Lead, Faster Diagnosis, NHS Cancer Programme, NHS England
  • Dr Alia Munir – Consultant Endocrinologist, Sheffield Teaching Hospitals NHS Foundation Trust
  • Jenny Prinn – Neuroendocrine cancer patient
  • Professor Mark Pritchard – Professor of Gastroenterology and Honorary Consultant Gastroenterologist, University of Liverpool and Liverpool University Hospitals NHS Foundation Trust
  • Dr Debashis Sarker – Senior Lecturer and Honorary Consultant Medical Oncologist, Guy’s and St Thomas’ NHS Foundation Trust
  • Dr Raj Srirajaskanthan – Consultant in Gastroenterology and Neuroendocrine Tumours, King’s College Hospital NHS Foundation Trust

Other contributors to Neuroendocrine cancer: an ideal patient care pathway, including those who participated in an expert interview:

  • Dr Thomas Armstrong – Consultant Hepatobiliary and General Surgeon, University Hospital Southampton NHS Foundation Trust; lead of the Wessex NET Group
  • Peter Blomley – Neuroendocrine cancer patient
  • Professor Martyn Caplin – Professor of Gastroenterology and Neuroendocrine Cancer, Royal Free Hospital and University College London; Center Head, Royal Free ENETS Center of Excellence
  • Professor Maralyn Druce – Professor of Endocrine Medicine and Consultant in Endocrinology, Barts and the London School of Medicine and Dentistry and Barts Health NHS Trust
  • Dr Simon Hodes – General Practitioner, General Practitioner Trainer and Appraiser, Cleveland Clinic London and Mountwood Surgery Northwood
  • Dr Mairéad McNamara – Senior Lecturer, University of Manchester, and Consultant in Medical Oncology, The Christie NHS Foundation Trust
  • Professor John Newell-Price – Professor of Endocrinology, University of Sheffield; Center Head, Sheffield ENETS Center of Excellence
  • Professor John Ramage – Consultant Physician in Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust; Deputy Lead Clinician, King’s Health Partners NET Centre
  • Mike Tadman – Senior Clinical Nurse Specialist in NETs, Oxford University Hospitals NHS Foundation Trust
  • Professor Chrissie Thirlwell – Mireille Gillings Professor of Cancer Genomics, University of Exeter; Clinical Director, South West Genomic Medicine Service Alliance; Consultant Medical Oncologist, Royal Devon University Healthcare NHS Foundation Trust
  • Professor Martin O. Weickert – Consultant in Endocrinology, University Hospitals Coventry and Warwickshire NHS Trust; Center Head, Coventry ENETS Center of Excellence

Project funding

The development of Neuroendocrine cancer: an ideal patient care pathway was funded by NCUK. The report was written by HPP, with co-authorship from an expert advisory group and various additional stakeholders. The expert advisory group had full editorial control over the content.

The event to launch the patient care pathway for neuroendocrine cancer at the UK Parliament was funded by NCUK; it has been organised and will be delivered by NCUK and HPP.