Neuroendocrine cancer: an ideal patient care pathway

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

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 MBChB (Birm 1996), MRCGP
General Practitioner

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

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

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.

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.

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.

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.

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.

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.

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

“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.”