Supporting the

Neuroendocrine Cancer Community

Mental Health Outreach Campaign

Nov 9, 2022

November 10th was World Neuroendocrine Cancer Day.

Assumed rare, Neuroendocrine Cancer is now the 10th most prevalent Cancer in England, with a continually rising incidence – that has already seen a 371% increase since 1995.

Despite this increase, low awareness and further assumptions exist.

This year, on the 10th of November, Neuroendocrine Cancer UK, launched its “Assumptions” Campaign – and it was an invitation to ‘Ask More, Assume Less’.

Assumptions can have a devastating impact on those diagnosed – causing delays in early, accurate, diagnosis, raising barriers in access to expertise and specialist care, adversely affecting Open Conversations and the psychosocial burden for patients – assumptions that can permeate throughout the entire lived experience of this, often incurable, lesser-known cancer.

Our Campaign Toolkit includes access to free information resources for your hospital, access to support for your patients, a report highlighting the issues Neuroendocrine Cancer patients face, educational opportunities, research publications and a short awareness video.

 

 

Incidence and survival of neuroendocrine neoplasia in England 1995–2018

Neuroendocrine Cancers – why data matters

Incidence and Prevalence of Neuroendocrine Cancers in England 1995-2018.

This comprehensive whole population analysis of NEN is to our knowledge the largest in Europe to date.

Between 1995 and 2018, in England, the incidence of Neuroendocrine Cancers rose by 371% – in the same time period all-cancer incidence (excluding non-melanoma skin cell cancer) rose by only 116%.

A precise understanding of incidence and survival for NEN is crucial both to improve clinical outcomes and guide healthcare resource allocation.

In this paper, we have demonstrated that the classification of NEN as either NET or a NEC, with appropriate staging, is crucial in determining treatment options, alongside giving clinicians a better idea of prognosis.

Neuroendocrine Cancers (NENs) are often under-recognised malignancies with an increasing health care burden.

Early diagnosis of NEN is related to reduced morbidity and mortality, however patients frequently experience misdiagnosis and significant delays in obtaining an accurate and timely diagnosis.

According to our data, NEN is now the 10th most prevalent cancer in England, and the most prevalent GI malignancy after colorectal cancer.

Rising incidence of NEN (Neuroendocrine Cancers), coupled with improved survival, means that the cohort of patients living with this disease across Europe is increasing. However, deprivation – lower socioeconomic status – remains a highly influential adverse determinant of outcomes.

Improved, tailored commissioning for NEN services is needed to ease the burden on national healthcare systems and chiefly to provide better care for patients living with this condition.

Full paper available via button below: White et al (2022) Incidence and survival of neuroendocrine neoplasia in England 1995–2018: A retrospective, population-based study. The Lancet Regional Health – Europe Volume 23, December 2022, 100510

This work was supported by a grant from Neuroendocrine Cancer UK

Neuroendocrine Cancer Nurse Competency Framework


The prevalence of Neuroendocrine Cancer is rising, in part, due to an increase in incidence, better detection/awareness and improvements in diagnostics, and parallel to general increasing life expectancy (Caplin 2015, Lewis et al 2017, Guzman Castillo et al 2017, Genus et al 2019, White et al 2021, White et al 2022), increasing the necessity for an informed and competent specialist clinical healthcare.

Delivery of high-quality care that produces better outcomes for patients needs a high-quality workforce: skilled and competent practitioners who are fit to deliver care in the future health and social care system.

A competency framework is founded on nursing philosophy, required standards of practice, and outlines the depth and breadth of knowledge and skills required: an ideal set of behaviours, skills, knowledge expectation and traits needed for any role.

The aim of the Neuroendocrine Cancer Nurse Competency Framework Initiative (#NNCFI) was to develop a Neuroendocrine Cancer specific competency framework; to provide a clear structure for both practitioners and employers regarding knowledge and skills development in Neuroendocrine Cancer nursing.

First accredited in 2021, we are delighted to share that this framework has just successfully achieved re-accreditation from the Royal College of Nursing for a further year.

The Neuroendocrine Cancer Nurse Competency Framework is available to download via button below

Open Conversations: Neuroendocrine Cancer and Mental Health report

On World Mental Health Day, Rareminds and Neuroendocrine Cancer UK (NCUK) launched a campaign to highlight the need for greater understanding of the psychosocial and emotional impact faced by Neuroendocrine Cancer (NC) patients and carers compared with the ‘common’ cancer population, and to address the additional psychological challenges which come with such a diagnosis.

We have produced an ‘Open Conversations: Neuroendocrine Cancer and Mental Health report’ to raise awareness of these issues and encourage everyone, in particular Healthcare Professionals (HCPs), to have more ‘open’ conversations with their patients about their emotional wellbeing and mental health.

Our aim is to:

  • Recognise that the psychological burden of Neuroendocrine Cancer as a lived with incurable cancer is high.
  • Encourage more open conversations between patients and HCPs, reinforcing the value of a good relationships.
  • Raise Awareness of the emotional challenges & additional burdens that Neuroendocrine Cancer patients face.
  • Provide Support and useful and immediate advice and support for patients and healthcare professionals.

SELECT HERE to learn more about the campaign

NCUK Academy A competency based, CPD accredited, Nurse & AHP Course.

Developed by our specialist nurse, AHP and expert patient faculty and endorsed by UKINETs, the Academy includes a combination of evidence-based, resources, clinical practitioner and patient video presentations.

The Academy is a competency-based modular programme that aims to work from promoting awareness to encouraging a deeper understanding of Neuroendocrine Cancers – enhancing knowledge, problem-solving and the critical thinking skills of those completing it.

Please share with colleagues! Further details can be found by selecting here: NCUK Academy Information

RCGP online learning modules on Neuroendocrine Neoplasms


In an average practice of 10,000 patients, approximately 5 patients will be living with and beyond a diagnosis of neuroendocrine neoplasm (NEN) 

Neuroendocrine Neoplasms (NENs) is the medical term for Neuroendocrine Cancers: a group of cancers that have been classified (by WHO 2017) into 2 key groups:

  • Neuroendocrine Tumours (NETs) 
  • Neuroendocrine Carcinomas (NECs).

Both incidence and prevalence of NENs is rising, which has a significant implication for the health service – from primary through to tertiary care.

NCUK are delighted to have collaborated with the Royal College of General Practitioners (RCGP) to fund and develop an online learning resource, for primary care healthcare professionals, about Neuroendocrine Neoplasms.

This course was developed to support primary care clinician’s professional development by increasing awareness and understanding of Neuroendocrine Neoplasms (NENs).

The aim is to improve earlier diagnosis and care, by reducing possible delays and improving earlier, appropriate secondary and specialist care referral.

Over the course of two condensed modules, topics discussed include:

  • the many types of NENs, 
  • common presenting symptoms, 
  • the challenges diagnosis presents, 

and the vital role primary care plays during and following diagnosis.

‘Neuroendocrine Neoplasms’ eLearning course is now live and is available via the RCGP website: You can access the course below.

NCUK Patient Information and Resources

We aim to make our information as clear as possible by writing in plain language and explaining medical terminology. 

From Fact sheets to Wallet cards, we use our medical advisory board to check our information for medical accuracy, and patients and supporters, including our ambassador team, to check that our information makes sense and answers their questions clearly and sufficiently. 

Our written resources sit alongside our videos, podcasts, and support service resources such as our community social media groups and our local, regional and national NCUK Natter support groups.

We also provide a dedicated helpline – offering both specialist nurse and patient peer support – and an expert psychotherapy and counselling service., through partnership with our colleagues at Rare Minds CIC.

UKINETs : UK and Ireland Neuroendocrine Tumour Society


UKINETs was founded and exists to promote professional and public awareness of Neuroendocrine Cancers throughout the UK and Ireland with the aim of optimising patient care and outcomes. This will be achieved through research, education, communications and patient and professional advocacy, working with other professional bodies, charities, patient groups and governments.

The UKI NETS 20th Annual conference will be held in person at the Royal College of Physicians in London. Further details can be found here.

 

ENETs: European Neuroendocrine Tumor Society

 

ENETs was founded, and endeavours, to facilitate best standards of care to NEN patients worldwide.

We strive to increase knowledge and awareness of NEN in all healthcare systems, improve early diagnosis of NEN, enable patients to be referred to NEN specialist centres, and monitor and audit the standards of care in NEN centres. ENETS also stimulates and fosters NEN research worldwide.

ENETs produces consensus, evidence-based guidelines and educational webinars – available through their website here

The 20th Annual ENETS Conference will take place as a hybrid event in Vienna, Austria, on 22 – 24 March 2023 – further details are available here.

About Us – Neuroendocrine Cancer UK

Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers:

from diagnosis, enabling access to the best care and treatment, while stimulating and supporting research, increasing national awareness and influencing improvements in outcomes.