Supporting the

Neuroendocrine Cancer Community

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.


Please click on the arrows to display all of the endorsements from our supporters.

Professor Martyn Caplin

Professor of Gastroenterology and Neuroendocrine Cancer
Royal Free Hospital, London
‘This is an incredibly important document for all those who have an association with neuroendocrine tumours. Processes to enable earlier diagnosis, referral to appropriate experts and equality of care across the UK has to be the foundation for the optimal management of NET patients. This document serves to inform policymakers, patients and medical care givers of the fundamental requirements for appropriate NET care. Congratulations to all those involved in producing this wonderful document for “the ideal patient care pathway” as the patients deserve nothing less.’


I write to you on behalf of the UK INETs and as Chair of the Education Committee. I am really grateful that you, alongside have created a patient care pathway for neuroendocrine cancer. We fully endorse the pathway and agree that this is essential to providing care, performing appropriate investigations and delivering therapies for these patients with cancer. 

We have carefully reviewed the executive summary, the introduction including the point of suspicion, testing, diagnosis, grading, the referral to specialist multidisciplinary team and treatment. Also, the details on barriers to care and how to overcome these. 

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. 

Yours sincerely, 

Dr A Munir MB BCh FRCP PhD 

Consultant Endocrinologist 

Jane Lyons, Cancer 52 CEO

As ever the NCUK team have gone to the heart of the matter and identified clearly what’s needed for the increasing number of patients being diagnosed with a neuroendocrine cancer. It’s a great and targeted piece of work which deserves a good deal of attention, and resultant action.

Dr Simon Hodes

Dr Simon Hodes MBChB (Birm 1996), MRCGP
General Practitioner

‘Neuroendocrine tumours (NETs) are very challenging to diagnose and manage, and often present late. These new guidelines are an excellent resource which should help support patients and health care professionals alike, will hopefully reduce health inequalities and should ultimately improve standards of care for all. Thank you and well done NC-UK.’

British Society of Nuclear Medicine - BNMS

The Officers and Council are happy to support the Neuroendocrine cancer patient pathway document.

Mark McDonnell

President International Neuroendocrine Cancer Alliance

On behalf of INCA, International Neuroendocrine Cancer Alliance, we wholeheartedly support and endorse this project defining an ideal care pathway for neuroendocrine cancer.
The care pathways experienced by patients diagnosed and living with neuroendocrine cancer vary enormously across the globe and within countries. The lack of clear and equitable access to diagnostics, disease specific expertise and relevant care requirements leads to suboptimal patient outcomes. There is a clear patient unmet need for improved services for this disease and to ensure equitable access to such services.
This project clearly aims to address the current significant inequities and care delays experienced by neuroendocrine cancer patients. We strongly support and endorse the inclusion of this ideal care pathway into national cancer plans and healthcare services to ensure that patients have the best possible outcomes.

British Thoracic Oncology Group

I am pleased to confirm BTOG’s endorsement of this document following review by 3 members of the BTOG steering committee with an interest in this area.

Amy Eccles

Consultant Radiologist at Imperial College Healthcare NHS Trust

As a radionuclide radiologist working in both the diagnostic and therapeutic management of patients with NENs, I support this document as a proposed ideal patient care pathway. It sets out the current challenges and potential solutions to support early diagnosis, access to specialist care and ongoing follow up.

Vivienne Beckett, AAA, Novartis

We welcome the development of this pathway for people living with neuroendocrine neoplasms (NEN) and have been proud to contribute to its development alongside other stakeholders with Neuroendocrine Cancer UK. We believe that by working in partnership with others, we have an opportunity to improve equity of care and provide a better experience for people with NEN in the UK.

Kym Winter, Rareminds

Clinical Director/CEO RareMinds

This new proposed Pathway will benefit not only the physical health but mental health of NEN/NC patients by helping to reduce the uncertainty and anxiety that is endemic to the NEN experience, pre-diagnosis and beyond. We are delighted to endorse its adoption to the overall benefit of this vulnerable patient community, and those who care for them.

Jo Grey - AMEND

CEO The Association for Multiple Endocrine Neoplasia Disorders (AMEND)

This report concisely explains exactly what the current problems are for patients with NENs, from diagnosis through to accessing the appropriate treatment and care at the right time in the right place, and even the lack of understanding by health professionals of what a NEN is. Given the increasing diagnostic rate combined with delays in diagnosis, the report is an essential tool that can help improve the pathway for this patient community and save lives. AMEND fully supports the recommendations within the report.

Tom Armstrong

Tom Armstrong PhD FRCSEd
Clinical Lead for Wessex NET Group and Chair of UKINETs Clinical Practice Committee
Consultant Hepatobiliary and Pancreatic Surgeon

This document clearly highlights the challenges facing patients with neuroendocrine tumours in obtaining the treatment and care they need. Many of the barriers to consistent, multidisciplinary care in the UK will only be overcome through National Commissioning of Services to these patients.

Dame Laura Lee, Maggie’s

CEO of Maggie’s

I fully support Neuroendocrine Cancer UK’s ideal care pathway as it aims to address inequities in diagnosis, care, and support and assist all people with Neuroendocrine Cancer to access best cancer care across the NHS.

Professor Was Mansoor

Professor Was Mansoor MBChB FRCP PhD
Department of Medical Oncology
The Christie
This is an excellent and much needed initiative. Neuroendocrine cancers constitute a group of complex cancers with low incidence but high prevalence. These factors make patients suffering from these cancers vulnerable to inequity and face a postcode lottery in their care. In my view, this is an important document which aims to effectively reduce these problems. Thank you

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.


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

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