Supporting the

Neuroendocrine Cancer Community

working together

HEALTHCARE PROFESSIONAL SUPPORT

Working together to improve care for patients and spread awareness of these rare conditions to aid earlier diagnosis.

Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.

We believe in collaboration, our whole community working together, to improve holistic care for patients, to promote access to best care and treatments, increase awareness, encourage and support clinical research and ultimately improve patient experience, self-efficacy and outcomes.

Whether you work within primary, secondary or tertiary healthcare – If you’re a healthcare or allied healthcare professional – and want to know more about what we do, how you can get involved and how we can support your practice and professional development, then select from the options below to find information specific to you.

NCUK is very grateful for the generous time given, support and input from our Clinical Expert Advisory Team, NCUK Patient Ambassadors, Trustee Board (which includes healthcare professionals) and our patron Professor Martyn Caplin.

SUPPORTING YOUR PATIENT

 

Order Patient Information

For your hospital or clinic

NCUK's Support Services

Support groups, counselling & more.

Compassionate Welfare Grant

Financial help towards costs associated with getting to and from hospital appointments

Supporting Your Practice & Professional Development

 

NCUK ACADEMY

Neuroendocrine Cancer UK is thrilled to announce that we have now launched the competency-based, CPD accredited NCUK Academy Nurse Course.

The NCUK Academy is independent and free-to-access any time. It was designed for nurses (and allied healthcare professionals), working across a range of healthcare settings, to provide a free online resource regarding Neuroendocrine Cancer – what it is, how it may present and how it is diagnosed, treated and managed.

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 and is divided into 4 key inter-related E-learning components:

Part 1: An introduction and overview of Neuroendocrine Cancer

Part 2: Site Specific Neuroendocrine Cancers

Part 3: Related Syndromes

Part 4: Holistic Care Considerations

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.

We would like to take this opportunity to once again thank our incredible specialist nurse, AHP and expert patient faculty: Angie Williamson, Catherine Bouvier, Gail McKane, Irene Wotherspoon, Kate Quirk, Kym Winter, Liz Quaglia, Mike Tadman, Nikie Jervis, Wendy Martin,Yasmin Chotai de Lima for their contribution to this innovative course.

NCUK Academy Website

Improve your understanding of Neuroendocrine Cancers. Registration is free.

NCUK Academy Press Release

Download the press release.

Competency Framework Accreditation

NCUK Neuroendocrine Cancer Nurse Competency Framework receives RCN accreditation

NCUK are delighted to have collaborated with the Royal College of General Practitioners (RCGP) to fund an online learning course about Neuroendocrine Neoplasms (NENs). This activity is part of our vital Bridging the Gap campaign.

BRIDGING the Gap is about change: changing attitudes towards and assumptions made about Neuroendocrine cancer, challenging delays, misdiagnoses, and restricted access to care and support to ensure all affected by this group of rare cancers have a clear, effective and holistic diagnostic/treatment pathway.

In an average practice of 10,000 patients, approximately 5 patients will be living with and beyond a diagnosis of neuroendocrine neoplasm (NEN). This course aims to increase the primary care clinician’s knowledge of neuroendocrine neoplasms, and thereby improve the time to diagnosis and management of patients with NENs.

Suspicion of NENs is imperative to improve outcomes for all our community. Our Barriers to Diagnosis survey highlighted these issues and we need to change the facts.

The two course modules will discuss the types of NENs, common presenting symptoms, the challenge of a NEN diagnosis, and the importance of primary care input following diagnosis.

‘Neuroendocrine Neoplasms’ eLearning course is now live and is available to ALL healthcare professionals for one year.

UKINETs Neuroendocrine Cancer Guidelines

 

UKINETs (UK & Ireland Neuroendocrine Tumour Society) represents scientists, nurses, allied health care workers and clinicians involved in providing services to Neuroendocrine Cancer patients.

The society’s aims are to:

  • Standardise practise in UK and Ireland
  • Improve standards of Neuroendocrine Cancer services in UK and Ireland
  • Support setting up specialist services
  • Promote education
  • Promote collaborations
  • Promote clinical trials and research

The society has galvanised the community of Neuroendocrine Cancer experts, promoting discussions and collaborations, allowing sharing of experience, highlighting areas for development, and supporting research.

Further Information on Neuroendocrine Cancer Care Guidelines:

Educational Events & Opportunities

ENETS webinar

The next ENETS webinar is on 20 July 2022

The ENETS Education Board is delighted to offer a webinar on “Selection of the most appropriate chemotherapy, type and precise modality of administration in metastatic GEP-NENs”.

For further information on how to watch this and other webinars visit : https://www.enets.org/webinars-podcasts.html

Please note that to watch this webinar, you will be required to log into MY ENETS.

The ENETS webinar series is free of charge and no registration is necessary – you do not even need to be an ENETS member! All you need is a free ENETS account.

You don’t yet have an ENETS account? Create one here.

If you have any technical issues, please contact the ENETS Office at info@enets.org.

This webinar will later be placed in the ENETS webinar archive after the event.

Applying Genomics to Clinical Practice: Nucleus

Relevant to all healthcare professionals working in the genomics era.

Nucleus is an easy to access, online educational and knowledge sharing hub that brings together like minded individuals to learn about genomics and engage in discussions with peers and subject matter experts.

Nucleus was developed from a collaboration between Guy’s and St Thomas’ NHS Foundation Trust and Medics.Academy, and is a collection of up-to-date, relevant and engaging genomics content, comprising blogs, articles, thought pieces, case studies and learning materials.

UK Acute Oncology Society

November 2021 saw the launch of the UK ACUTE ONCOLOGY SOCIETY (UKAOS)

The UKAOS is a new multidisciplinary group of health professionals committed to the development and delivery of Acute Oncology services across the UK and for it to become the UK voice of Acute Oncology supporting the development of education and research.

The aims of the UKAOS are to :

  1. Act as an expert resource – sharing information and pathways and working with National Health Departments and related organisations
  2. Act (with other recognised organisations) to ensure patient safety and wellbeing is at the centre of all acute cancer care
  3. Work with relevant organisations to develop research opportunities
  4. Collaborate with stakeholder groups to develop training resources for professionals working in acute oncology
  5. Deliver an annual meeting on acute oncology.

Achieving the aims of the Society, will need the support of professionals working in, or who have a specific interest in, the field of Acute Oncology.

Register your interest and receive further information, including invitations to meetings, e-communications and access to the wealth of information provided through the website

Get Involved!

We take our responsibility to provide accurate and appropriate information and support to patients and all within our Neuroendocrine Cancer community very seriously – we are here to work alongside the people who contact us, our community and our expert healthcare colleagues across the UK.

Our Clinical Expert Advisory Panel, NCUK Ambassadors , community members and professional colleagues across the UK are absolutely vital to the production of our resources such as our website and information booklets, factsheets, videos and podcasts. Also our education events and advocacy initiatives.

If you would like to get involved – in information development, educational events, advocacy initiatives or share best practice, research / study plans and / or results – contact us here.

We are Proud Members

We are proud members of Cancer52, International Cancer Alliance (INCA) , European Patient Advocacy Group (EPAG) for European Reference Networks (ERNs) for Rare Endocrine Cancers ( EURACAN), UK & Ireland Neuroendocrine Tumour Society (UKINETs), European Neuroendocrine Tumour Society (ENETs) , European Society of Endocrinology (ECE) & European Society of Medical Oncology (ESMO).

And Professionally Collaborate with fellow patient organisations:

NCUK and AMEND joint venture supports adrenocortical cancer patients through ACC Support UK.

NCUK and Maggie’s Centres joint venture supports anyone affected by Neuroendocrine Cancer through part of our Natter initiative.

NCUK is an active member of Cancer52 , an organisation that works alongside CRUK and PHE to influence national cancer strategies and service provision.