Support for Healthcare Professionals
Working together to improve patient care and spread awareness of these rare conditions to aid earlier diagnosis.
We believe in collaboration, our whole community working together to improve holistic care for patients, promote access to best care and treatments, increase awareness, encourage and support clinical research and ultimately improve patient experience, self-efficacy and outcomes.
Neuroendocrine Cancer UK is very grateful for the generous time given, support and input from our Clinical Expert Advisory Team, Neuroendocrine Cancer UK ambassadors, Trustee Board (which includes healthcare professionals) and our patron Professor Martyn Caplin.
In this section you can learn more about:
Supporting your Patient
We’re committed to working with healthcare professionals to ensure the highest possible standards of treatment and care for people with neuroendocrine cancer.
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Compassionate welfare grant
Our welfare grant is a small grant that we would like as many people to be able to access as possible. Please note that we can now only offer a maximum of £100.00 – as a one-off payment. A member of the health team must complete this. If your patient is struggling financially, they may find some of Macmillan’s information and advice services valuable: Other grants and loans.
Neuroendocrine Cancer: An Overview for GPs
Neuroendocrine Cancer: An Overview for Healthcare Professionals
Neuroendocrine Cancer: An Overview for Gastroenterologists
Supporting Your Practice & Professional Development
Neuroendocrine Cancer UK’s is 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.
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.
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:
An introduction and overview of Neuroendocrine Cancer
Site Specific Neuroendocrine Cancers
Holistic Care Considerations
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.
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Neuroendocrine Neoplasms Online Course
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.
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.
The Only Book I’ll Ever Write: When the Doctor becomes the Patient. Written by Dr. Paul Coffey.
Paul Coffey, a GP who died in April 2021, wrote this remarkable book while being treated for cancer. Unsurprisingly, it is being widely promoted as something that should be read by cancer patients, medical students, trainees, and qualified doctors, as well as other professions involved in cancer care.
Written with an elegant simplicity and considerable wisdom, suffused by a wry, self-effacing humour, and above all with a painful honesty, it is a real page-turner — I read it in two sittings — and an emotional rollercoaster (or bungee jump as Coffey would have had it).
Out of nowhere a fit GP — a marathon runner and golfer — approaching retirement is diagnosed with inoperable gastric cancer, presumed to be adenocarcinoma. The tumour is so advanced that is impossible at first to determine whether it was arising in the stomach or pancreas; however, further investigation revealed that rather than facing a survival time measured in months, an altogether more optimistic prognosis seemed possible — the lesion turned out to be a grade 2 (intermediate) neuroendocrine tumour (NET).
“Written with an elegant simplicity and considerable wisdom … it is a real page-turner … “
Reprieve from the gastric cancer death sentence was one of the first major emotional episodes in a story that is packed with events and emotions. NETs are more amenable to a range of therapies, but, needless to say, nothing is that simple.
Coffey charts the medical, human, oncological, and psychological dramas that take place over the next 3 years with great charm, insight, intelligence, and honesty. The fact that he lived much longer than originally feared was related, in large part, to having a brilliant surgeon and access to state of the art oncology treatments in Oxford and London.
Coffey weaves several additional themes into this book, which I agree has a great amount to offer to anyone involved in cancer care. There are astute reflections on the way that general practice has changed over the last 40 or so years, in the context of a changing NHS.
There are some very affecting vignettes of interactions with patients, many of them related to continuity of care, and a strong message about learning from your patients. There are interesting reflections on the pros and cons of private medical insurance, as well as some fairly graphic descriptions of the business of being a patient undergoing chemotherapy, surgery, and multiple investigations.
“Coffey charts the medical, human, oncological, and psychological dramas … with great charm, insight, intelligence, and honesty.”
Most of all, however, the book is about relationships — Coffey’s own strong marital and family relationships, the crucial relationships that he made with the surgical and oncology specialists looking after him, as well as all the interactions, each one heavily freighted with meaning for anyone worrying about cancer, with nurses, healthcare assistants, receptionists, and managers.
He describes a number of consultations in great detail, emphasising how the tiniest nuance in the first few words uttered by the specialist, the slightly off-key turn of phrase, the emotional temperature of the consultation, all have immense effects on an anxious cancer patient. He absolutely correctly identifies the importance of giving hope, of someone putting a metaphorical (or physical) arm around the patient, as being at the very centre of these interactions.
There are two excellent appendices to this book. One, written by Coffey’s wife Jane, entitled Effective Patient-ing, contains a wealth of advice and tips on how to get the most out of contact with the health service. The other is a guide to NETs, which are becoming recognised as more prevalent than previously thought, and emphasises the importance of accurate histological diagnosis to differentiate them from other cancers, because of the major implications for treatment and prognosis. Proceeds from the sale of this book will go to Neuroendocrine Cancer UK.
Featured book: Paul Coffey, The Only Book I’ll Ever Write: When The Doctor Becomes The Patient, independently published, 2022, PB, 246pp, £8.99, 978-8435998252
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:
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The European Neuroendocrine Tumor Society (ENETS) was founded in 2004 and currently has more than 1,500 members. ENETS members come from a variety of different medical fields, including oncology, endocrinology, gastroenterology, nuclear medicine, pathology, radiology, surgery, and basic/translational science.
European Society of EndocrinologyThe voice for endocrinology
The European Society of Endocrinology is at the centre of Europe’s endocrine community. Their vision to shape the future of endocrinology to improve science, knowledge and health.
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:
Neuroendocrine Cancer UK and AMEND joint venture supports adrenocortical cancer patients through ACC Support UK.
Neuroendocrine Cancer UK and Maggie’s Centres joint venture supports anyone affected by Neuroendocrine Cancer through part of our Natter initiative.
Neuroendocrine Cancer UK is an active member of Cancer52 , an organisation that works alongside CRUK and PHE to influence national cancer strategies and service provision.