NCUK launches ideal patient pathway for NENs at Parliament

Neuroendocrine cancer: an ideal patient care pathway

Over the past year NCUK and the health policy partnership (HPP) have worked alongside a multidisciplinary, multistakeholder expert advisory group to design a patient care pathway.  The objective was to address the persistent challenges and inequities in diagnosis and disease management that have been affecting patients with NENs, and to create an evidence-based, consensus-driven, standardised care pathway for patients with GEP and pulmonary NENs in England.  Many thanks to all of you who contributed to the development and review of this pathway and to all those who donated towards this key project.

On June 14th, 2023, it was launched at Parliament to build political awareness of and support for the pathway by providing an opportunity for MPs to pledge their support for the patient care pathway’s integration into the health system.


Rt Hon Justin Madders MP opened the meeting and spoke about his experience of witnessing the frustrations and struggles an employee of his living with a NEN had in a ‘pathless world’.  Catherine Bouvier Ellis, CEO of NCUK, shared an overview of the disease, the challenges faced by those living with neuroendocrine cancer and highlighted that as the tenth most prevalent cancer in England ‘the time to act is now.’ Actor Olivia Williams, a patient, gave a courageous and personal account of her struggles in obtaining a correct diagnosis and the impact this had on her in terms of metastases of her VIPoma and the cost impact for the NHS.  Dr Alia Munir, consultant endocrinologist and UKINETS Education and Training Committee Chair, discussed how establishing a standard care pathway for neuroendocrine cancer could overcome many of the challenges faced by patients while still supporting the NHS’s current ambitions and practices.


As part of the event, MPs were asked to send a letter to the Integrated Care Board (ICB) which serves their constituency, to ask them to integrate the care pathway into practice.


The event was a success, there was a lot of engagement for, and support of the pathway and it was so important that MPs had the opportunity to hear from those living with neuroendocrine cancer and their challenging paths to diagnosis.  The following months will see us endeavour to reach all NHS Integrated Care Boards and ask them to implement the pathway into the NHS to help reduce inequalities in care.

PLEASE SUPPORT US by sending a letter to your Integrated Care Board to ensure they are aware of the pathway.   A draft letter has been prepared, which you can access here.  

Read a copy of the #NCCarePathway here: Neuroendocrine Cancer: An Ideal Patient Care Pathway – Neuroendocrine Cancer UK

If you want to get involved or support any of these activities, please email Lisa at [email protected]