We’re committed to working with healthcare professionals to ensure the highest possible standards of treatment and care for people with neuroendocrine cancer.

Select the image to learn more.

Neuroendocrine Cancer: An Overview for Healthcare Professionals

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.

Select the image to learn more.

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.

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

Review by Roger Jones. Roger Jones is Emeritus Professor of General Practice, King’s College London, and previous Editor of the BJGP.

Further Information on Neuroendocrine Cancer Care Guidelines:

Select the image to learn more.

ESMO

ESMO is a professional organisation for medical oncology. With more than 28,000 members representing oncology professionals from over 160 countries worldwide, ESMO is the society of reference for oncology education and information.

NOW OPEN

Surgical Speciality Lead

We are delighted to partner with the Royal College of Surgeons for the first neuroendocrine cancer SSL.

The Surgical Speciality Lead will act as a key link between the designated Surgical Trials Centres and national clinical research networks within their discipline. The Surgical Speciality Lead will be supported for three years to develop multicentre clinical trials within their area of expertise. In the first year, each Surgical Speciality Lead would be expected to work up two proposals with the trials centre and their clinical collaborative group, one of which would be taken forward to pilot phase and funding.

Past Grants

Practice-changing Grants

As part of our Advancing Neuroendocrine Cancer Research campaign, and in collaboration with the United Kingdom & Ireland Neuroendocrine Tumour Society (UKINETS) we launched our Practice-Changing Grants in 2023. These grants aim to find new and practical ways to improve the lives and experiences of people with neuroendocrine cancer (outcomes must be shown within 12 months). These grants are practical in nature, open to any healthcare professional, and must demonstrate a clear benefit for people with NC.

We are delighted to announce that we will be funding 2 grants this year:

1. A Pilot Model of Group Education for nutritional/dietary advice and symptom management in neuroendocrine cancer will be run at the Royal Hallamshire Hospital, Sheffield
2. Evaluation of the impact on quality of life of a NET-specific pathway for patients, utilising the MyMarsden patient app, together with integration with Advanced Nurse Practitioner-led NET clinic which will be run at the Royal Marsden Hospital.

A Pilot Model of Group Education for nutritional/dietary advice in neuroendocrine cancer

For many years group education has been used to empower and educate patients to manage chronic conditions for example in Type 1 Diabetes mellitus. Sheffield Hospital will pilot the concept of group dietary education in patients with NC. There is an unmet clinical need and a shortage of NC-specific dieticians. A novel delivery of a nutritional education programme for NC patients by an expert NC dietician, specialist nurse, and doctor will be provided. This pilot will be used as a test bed, which if successful would be scalable and could be trialled in other centres.

To determine if implementation of the NET-specific pathway improves patients’ quality of life and assess levels of patient satisfaction.

Patients with NETs have distinct issues related to the diagnosis that are important to identify and address. Symptoms of NETs can be non-specific and may persist for long periods before being diagnosed. Patients can encounter difficulties in achieving this diagnosis, accessing information, having ongoing support, and gaining access to NET experts. This group of patients often have life long follow-up and treatment, requiring indefinite scans, which creates anxiety and requires support.

To improve the care and experience for patients with gastroenteropancreatic NETs under long-term surveillance or treatment with somatostatin analogues at The Royal Marsden, we are setting up Advanced Nurse Practitioner (ANP) led NET clinics. These will be in person or remotely as per the patient’s needs. Patients with NET are discussed in the multidisciplinary team meeting and initially seen in the consultant clinic. Suitable patients will be identified for the ANP-led clinic. In parallel, they will be supported to enroll in the new MyMarsden smartphone app, where they will have access to NET-specific patient information, and results of their blood tests and scans, combined with a messaging facility that will enable direct communication with the NET team through the app. This will be facilitated through full integration with the comprehensive electronic patient record. Patients without access to a smartphone will be given written information and access to telephone support from the NET team as needed.

We will evaluate the impact on quality of life of this NET-specific pathway for patients at The Royal Marsden, utilising the MyMarsden patient app for information and its messaging facility, together with integration with ANP led NET clinics and if successful this project will be able to be further rolled out.