Supporting the

Neuroendocrine Cancer Community

NET Patient Foundation Attends The British Society of Gastroenterology Annual Conference

Jun 27, 2019

“You go through the stages… denial, anger, through to grief for the life that will never be the same once diagnosed with a NET to a ‘kind of’ acceptance but underneath is terror, pure terror. And the more this is recognised, acknowledged and treated, the better all round. The mind and body are not separate entities they are closely interlinked so #letstalkaboutNETs” – Sally Jenkins

There was standing room only for the Neuroendocrine Cancer session and over 100 visits per day to the NET Patient Foundation stand at this year’s British Society of Gastroenterology Annual Conference – a marked change from just a few years ago. 

The British Society of Gastroenterology (BSG) was founded in1937 by Sir Arthur Hurst. It was started life as the Gastro-enterological Club with 36 members. The objectives were described as “the advancement of gastroenterology and promotion of friendship amongst those who have a special interest in the subject.”

It became The British Society of Gastroenterology (BSG) in 1949 and incorporated the British Society for Digestive Endoscopy during the 80s. In 2017 there were over 3,000 members with over 2,000 delegates now attending the BSG Annual Meeting each year. 

Delegates are amongst the third largest physician workforce in the UK health service – undertaking over 2 million gastrointestinal endoscopies each year for a variety of reasons: from diagnostic to therapeutic/interventional and monitoring, for both benign and malignant conditions.

GI symptoms and conditions account for approximately 10% of all primary care interactions – with bowel cancer the most common GI malignancy detected and treated and Neuroendocrine Cancer amongst the least suspected but the tide is turning.

Lead gastroenterologists with a specialist interest and expertise in Neuroendocrine Cancers gave a masterclass in the diagnosing and treatment of GI NETs and NECs: Mark Pritchard and Mohid Khan both presenting and chairing the session with additional talks from John Ramage, Christos Toumpanakis and Raj Srirajaskanthan. There was quiet commenting and chattering amongst the audience, but the crowded room fell silent for the talk given by Sally Jenkins – who captured and held the attention of all in giving her experience of life with Neuroendocrine Cancer. The applause and respectful questioning that followed showed how powerful the lived experience is in illuminating the real impact of both diagnosis and disease, the importance of getting it right and what NOT to say!

“Oh my, that was one of the best talks I have ever heard. I don’t think there’s a single person in this room that hasn’t been moved by your experience… you should give a TED talk!”

“That was one of the best sessions I have ever attended. Thank You Mark & Mo for arranging & chairing…”

And tweet from a gastroenterologist who attended the NET session at BSG conference: 

“Sally Jenkins gave a powerful perspective of what it is like to live with the disease. In 15 minutes she challenged us all in how it feels to:

– have a missed diagnosis

– live with metastatic disease

– journey the inevitable phases after diagnosis”

This session, one of the best ever attended at the BSG and the number of visits to our stand, in the exhibition hall, and the immediate feedback showed the increasing awareness and interest across the disciplines (nurses, gastroenterologists, pathologists, researchers, publishers, etc) in Neuroendocrine Cancer.