Neuroendocrine cancer: an ideal patient care pathway
Addressing inequities in diagnosis, care and support.
Neuroendocrine cancers, also known as neuroendocrine neoplasms (NENs), are a diverse group of cancers that have been increasing in incidence and prevalence worldwide.
An important 2022 publication, from work supported by Neuroendocrine Cancer UK, analysed data from the National Cancer Registry and Analysis Service (NCRAS) in England. This revealed a 371% increase in incidence from 1995-2018, with Neuroendocrine Cancer, as a collective group, being the 10th most prevalent cancer.
Despite this increase and the presence of 14 accredited Centres of Excellence across the UK, there are barriers to accessing faster, accurate diagnosis and expert-informed specialist care, treatment, and follow-up.
Our National Health Service is devolved: we have NHS England, NHS Scotland, NHS Wales (GIG Cymru) and HSC Northern Ireland – each nation has its own population priorities and healthcare needs, and each nation has its own Health and/or Cancer Plan:
- NHS Scotland – Cancer Strategy for Scotland 2023-2033
- NHS Wales (GIG Cymru) – A Cancer Improvement Plan for NHS Wales 2023-2026
- HSC Northern Ireland – A Cancer Strategy for Northern Ireland 2022-2032
For a pathway to work, these considerations must be born in mind – core principles and actions must be adaptable to each nation’s healthcare needs, infrastructure, and plan.
Developing a patient care pathway for neuroendocrine cancer aims to address the persistent challenges and inequities in NEN diagnosis and disease management and provide clear evidence and recommendations to decision-makers for improvement.
We have started our journey to implement the Ideal Pathway, across the UK, with NHS England – not only the largest organisation – but one also utilised by people from all four home nations, to access required diagnostics and specialist care for and following a diagnosis of Neuroendocrine Cancer.
This version of the Neuroendocrine Cancer Ideal Pathway has been designed in close collaboration with a multidisciplinary advisory group – incorporating patients, healthcare professionals, industry and policy-makers – and aligns with NHS England’s Long-Term Plan goals. Its effective integration within NHS England is a key priority to achieve optimal care provision for all people with NENs, within existing expert multidisciplinary teams nationwide.
The pathway is an empowering tool for those diagnosed and living with NENs, supporting them to seek the right care, in the right place, at the right time, and supporting the NHS more widely.
Since developing the Pathway, the UK Government has changed its national plan for cancer in England – incorporating it into the Major Conditions Strategy. However, the pathway’s key priorities and targetable opportunities remain relevant and implementable.
We are fully supportive of the patient care pathway to ensure optimal care and provision for all patients with neuroendocrine neoplasm. We would agree that effective integration of this pathway within NHS England is a key priority, and we completely agree that neuroendocrine cancers need to be managed as suspected cancers at whichever point patients enter the pathway.
The next steps include
- Spreading the word – see below for how you can help
- Adaption of the pathway to incorporate each devolved nation’s requirements, infrastructure and cancer plans
- Piloting the pathway in several Integrated Care Boards,
. . . to support a successful UK-wide implementation.
Endorsements
Please click on the arrows to display all of the endorsements from our supporters.
Join Us in Advocating for the Neuroendocrine Cancer Patient Care Pathway
Neuroendocrine Cancer UK has launched a major campaign to implement a dedicated neuroendocrine cancer pathway into and across the NHS, aiming to address the persistent challenges and inequities in diagnosis and disease management.
We need your help to raise awareness of this campaign and make sure decision-makers take notice.
How?
You can download and share our Pathway letter with your MP and/or local councillor. Click here to download.
If you are an MP or local councillor – you can pledge your support here.
If you sit on a Patient & Public Involvement group for your local hospital, Integrated Care Board and/or Cancer Alliance – you can share the pathway with fellow group members and leads. Let us know if you do.
If you live in Scotland, Wales or Northern Ireland – and would like to be involved in your nation’s version of the pathway, let us know – contact us.
Share YOUR story – let us know what YOUR Neuroendocrine Cancer experience has been. Click here to share your story.
Thank you for your support!
We would like to thank the expert advisory group for their help in developing the patient care pathway for neuroendocrine cancer:
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
We would also like to thank all the individuals who provided feedback on this report during its development, as well as those who participated in an expert interview:
Dr Thomas Armstrong – Consultant Hepatobiliary and General Surgeon, University Hospital Southampton NHS Foundation Trust, and 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, and 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, and Center Head, Sheffield ENETS Center of Excellence
Professor John Ramage – Consultant Physician in Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust, and 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, and Consultant Medical Oncologist, Royal Devon University Healthcare NHS Foundation Trust
Professor Martin Weickert – Consultant in Endocrinology, University Hospitals Coventry and Warwickshire NHS Trust, and Center Head, Coventry ENETS Center of Excellence