Supporting the

Neuroendocrine Cancer Community

February is always an important month for Neuroendocrine Cancer UK. It is the month of World Cancer Day and Rare Disease Day which gives us the perfect opportunity to talk about the unmet needs of this misunderstood cancer.

World Cancer Day is a poignant reminder of the collective efforts needed to combat cancer worldwide. For organisations like Neuroendocrine Cancer UK, this day holds profound significance, serving as a platform to raise awareness, advocate for change, and foster solidarity within the neuroendocrine cancer community. In this blog, we delve into why Neuroendocrine Cancer UK celebrates World Cancer Day and the impact of this global movement on individuals affected by this rare form of cancer.

Raising Awareness Neuroendocrine cancer, though often considered rare, affects thousands of individuals worldwide. Yet, awareness about this disease remains limited among the general public. World Cancer Day offers an invaluable opportunity to shine a spotlight on neuroendocrine cancer, educating people about its symptoms, diagnosis, and treatment options. By participating in this global initiative, Neuroendocrine Cancer UK strives to increase awareness and ensure that those affected receive the support and understanding they deserve.

Advocating for Change Beyond raising awareness, World Cancer Day is a catalyst for advocacy and action. Neuroendocrine Cancer UK uses this platform to advocate for improved healthcare policies, increased research funding, and better access to treatment for neuroendocrine cancer patients. By amplifying the voices of those affected and collaborating with policymakers and healthcare professionals, we work towards addressing the unique challenges faced by individuals with neuroendocrine cancer and advocating for meaningful change.

World Cancer Day embarked on a three-year initiative that began in 2022. It is aimed at sparking transformation and rallying ongoing efforts well beyond the event itself. The theme for this 2024 is “Closing the Care Gap”. The campaign is all about understanding and recognising the inequities in cancer care.

This is something Neuroendocrine Cancer community knows all too well about. Despite being the 10th most prevalent cancer in England*, national cancer plans do not currently represent the neuroendocrine cancer community*. Therefore, the development of a patient care pathway for neuroendocrine cancer is critical in supporting optimal care provision for all those diagnosed within existing expert multidisciplinary teams.

Last year, Neuroendocrine Cancer UK launched a major campaign to implement a dedicated Neuroendocrine Cancer Pathway into NHS England. The pathway aims to address the persistent challenges and inequities in diagnosis and disease management that have been affecting patients with neuroendocrine cancers, also known as neuroendocrine neoplasms (NENs), in England.

*Impact of neuroendocrine morphology on cancer outcomes and stage at diagnosis: a UK nationwide cohort study 2013–2015

**Since developing the Pathway, the UK Government changed its national plan for cancer in England – incorporating it into the Major Conditions Strategy.

One Cancer Voice Petition to Parliament – 2023

In a speech at the Francis Crick Institute on World Cancer Day 2022 (4 February), the then Health and Social Care Secretary, Rt Hon Sajid Javid MP, declared ‘a war on cancer’ and launched a call for evidence to underpin an ambitious 10-Year Cancer Plan for England.

The call for evidence was the beginning of the process to inform the Government’s 10-Year Cancer Plan, a new vision for how the UK will lead the world in cancer care. It promised to take a long-term look at how we harness innovation and what we want the patient experience to look like in 2032, with ambitious plans for action in several different areas. Over 5,000 people and organisations including Neuroendocrine Cancer UK responded to that consultation.

On 24 January 2023, the Government announced that it would be launching a 5-year ‘Major Conditions Strategy’ – which means they will no longer be publishing a 10-Year Cancer Plan. We are concerned that this reflects a dilution of the ambition and shifts focus away from some of the specifics asks, issues and opportunities for cancer services and for people affected by cancer.

More than 60 charities came together as One Cancer Voice, to campaign on behalf of people affected by cancer, to hold the Government to account and ensure it does not retreat on its ambition to transform cancer care and services for patients now and in the future. Cancer Research UK held a petition to demand the Prime Minister commit to a fully funded, ambitious, long-term action on cancer in England. In just four weeks a whopping 76,578 people signed the petition highlighting the need for unity in taking on those in power and Closing the Care Gap.

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Last year Neuroendocrine Cancer UK’s Catherine Bouvier and Leanne made this informative video that cuts through the confusion about whether or not Neuroendocrine Cancers are actually rare.
Incidence and survival of neuroendocrine neoplasia in England 1995−2018: A retrospective, population-based study:
As mentioned above, often assumed rare, Neuroendocrine Cancer is now England’s 10th most prevalent Cancer, with a continually rising incidence – that has already seen a 371% increase since 1995.
Given the statistics, you can see why it is confusing as to whether Neuroendocrine Cancer is in fact rare. Alongside other cancers, it is  definitely one of the lesser known cancers. Yet in our arena, we can see the frightening increase of incidence over the years.
Please show your colours and raise awareness on Rare Cancer Day – February 29th 2024.