Supporting the

Neuroendocrine Cancer Community

Welcome to the Neuroendocrine Cancer Pathway Campaign Page!
Explore our initiative dedicated to improving care for individuals living with neuroendocrine neoplasms (NENs) in England. Our campaign focuses on addressing the challenges faced by neuroendocrine cancer patients, including delayed diagnosis and limited access to specialised care.

Through the development and implementation of the Neuroendocrine Cancer Ideal Pathway, we aim to streamline diagnosis, enhance multidisciplinary care, and empower patients in navigating their treatment journey. 

Understanding the Neuroendocrine Cancer Ideal Pathway: Key Questions and Answers

What is a cancer pathway, and how does it differ from standard cancer treatment approaches?

A cancer pathway is a structured approach to diagnosis, treatment, and follow-up care. It guides healthcare providers in delivering standardised and optimal care to patients.

What specific challenges and inequities exist in diagnosing and managing neuroendocrine cancers?

Neuroendocrine cancers face challenges such as delayed diagnosis, low awareness among healthcare professionals, and limited access to multidisciplinary care and expert centers. The Ideal Pathway aims to address these issues.

How does the Ideal Pathway aim to address these challenges and inequities?

The Ideal Pathway provides evidence-based recommendations to improve neuroendocrine cancer care, focusing on faster diagnosis, access to specialist care, and overcoming barriers identified in the research.

What role do patient advocacy groups like us play in developing and implementing the Ideal Pathway?

Patient advocacy groups like Neuroendocrine Cancer UK collaborate with healthcare professionals, policymakers, and industry experts to develop and implement the Ideal Pathway, ensuring it is evidence-based and consensus-driven.

How does the Ideal Pathway align with the healthcare priorities and plans of different regions within the UK, considering the devolved nature of healthcare?

The Ideal Pathway is adaptable to different regions within the UK, aligning with their healthcare priorities and plans while addressing the specific needs of neuroendocrine cancer patients.

Can you provide examples or details of the recommendations made by the Ideal Pathway to decision-makers for improving neuroendocrine cancer care?

The Ideal Pathway recommends strategies for faster diagnosis, multidisciplinary care teams, and patient empowerment to decision-makers for improving neuroendocrine cancer care, based on thorough literature review and expert consensus.

What are the key priorities and targetable opportunities outlined in the Ideal Pathway?

Key priorities include spreading awareness, adapting the pathway for different regions, and piloting its implementation in Integrated Care Boards.

How can individuals and organisations support the spread and implementation of the Ideal Pathway?

Individuals and organisations can support the Ideal Pathway by spreading awareness, advocating for its adoption, and participating in pilot programmes.

What are the next steps in the implementation process, particularly regarding spreading awareness, adapting the pathway for different regions, and piloting its implementation?

Next steps involve spreading awareness, adapting the pathway for different regions, and piloting its implementation to support successful UK-wide adoption.

Introducing the Neuroendocrine Cancer Ideal Pathway
Discover the Neuroendocrine Cancer Ideal Pathway, a revolutionary guide designed to optimise care for individuals with neuroendocrine neoplasms (NENs) in England. Developed through rigorous research and expert collaboration, this pathway offers evidence-based strategies to streamline diagnosis, enhance multidisciplinary care, and empower patients throughout their treatment journey.

New Publication: Enhancing Neuroendocrine Cancer Care
We are pleased to share our new publication on the first patient care pathway for neuroendocrine neoplasms (NENs) in England. This pathway addresses challenges such as delayed diagnosis and limited access to expert care. Developed through extensive research and expert collaboration, it aims to provide optimal, equitable care for NEN patients. Read the full publication to learn more about our findings and recommendations.

Endorsements

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

Professor Martyn Caplin

‘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.’

Professor of Gastroenterology and Neuroendocrine Cancer

Royal Free Hospital, London

UKINETS

I write to you on behalf of the UK INETs and as Chair of the Education Committee. I am really grateful that you, alongside Neuroendocrinecancer.org 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

‘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.’

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

British Society of Nuclear Medicine - BNMS

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

Mark McDonnell

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.

President International Neuroendocrine Cancer Alliance

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

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

Dr Kate Higgs

Medical Manager in Oncology, Ipsen

“In the twenty years and more that Ipsen has been supporting patients with neuroendocrine neoplasms (NENs), it has always been a challenge to ensure patients are seen at the right time, in the right place and by the right specialists. We have been very proud to contribute to the development of this important milestone in the management of patients with NEN and sincerely hope that the Ideal Patient Care Pathway brings about improvements in diagnosis, care and support for patients.”

  • 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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