Patient Day Event at House of Commons
7 Nov 2013
Barbara McLaughlan of Novartis Rt Hon Sir George Young MP and Caroline Douglas
Barbara McLaughlan of Novartis Rt Hon Sir George Young MP and Caroline Douglas
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Sir George took part in Celebrating World NET Patient Day 2013 –at a function at the House of Commons with the NET Patient Foundation

Briefing from the Foundation below
What are NETs?
NET stands for neuroendocrine tumours, a group of complex cancers that affect neuroendocrine cells (cells involved in supporting the body’s chemical communication system, e.g. by releasing adrenalin into the blood stream in response to stress). NETs can form in many parts of the body but most commonly in the small intestine, lung, pancreas, colon and stomach. Data on the prevalence of these tumours is sparse, particularly in the UK. However, taken together (based on US data) NETs are more prevalent than gastric and pancreatic cancers combined.i
What issues do patients with NETs face?
Late diagnosis
Because NETs are relatively rare, patients who develop these tumours often face a difficult journey to diagnosis. For instance, patients with small bowel NETs are often diagnosed as having irritable bowel syndrome while the hot flushes that are symptomatic of some NETs are mistaken as side effects of the menopause in women of menopausal age (the “zebra” effect of misdiagnosing a rarer disease due to symptoms of a common one). As a result a correct diagnosis can take up to seven yearsii with around half of all patients being diagnosed when the cancer has already spread either regionally or to other organs.iii This spread of cancer to regional or distant sites shortens life expectancy.iv
Lack of referral to specialist centres
The UK currently has about 20 specialist NET centres with six achieving European NET Centre of Excellence status. However, not all patients are treated in these specialised centres and the level of resource available within the centres varies across the country, which is likely to have a negative effect on care and overall survival. An associated problem is the lack of a specific International Classification of Diseases (ICD10) code for the individual types of NETs which undermines efforts to gather reliable prevalence data in the UK that could inform the development of specific pathways for treatment. ONC13-C092b, 6 October 2013

Sir George met his constituent Caroline Douglas who had invited him to the event to learn about rare cancers. "One of the issues we discussed was the need to train GP's to spot NET, as early diagnosis is crucial. I was pleased to hear that Caroline's husband had been successfully treated three years ago, reguklarly cycles 50 miles and is currently mountain climbing in Nepal with his son."
"Some tumours are only detected by chance when people refer for other complaints."
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Copyright Sir George Young Bt. 2015