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Information Day Report East Kilbride, 17th September 2016

This event was organised by the NET Patient Foundation in association with the Ann Edgar Trust. Despite a terrible traffic jam in the East Kilbride vicinity, about 40 people attended from different parts of Scotland to what was a very useful and informative afternoon.

There were presentations from two medics involved in NET management as well as from the first NET nurse in Scotland and from the Ann Edgar Trust.

Dr David Macintosh who specialises in non-surgical treatment of tumours involving the gastrointestinal tract including NETs, is the current chair of the West of Scotland multi-disciplinary team (MDT). He explained that an oncologist is a clinician specialising in the non-surgical management of cancer.

He outlined the optimum facilities that are needed to manage the different types of NETs, such as CT scans, radiology and so on. The oncologist forms part of a MDT, which is composed of members from different healthcare professionals who come together to make treatment recommendations. They operate under the Scottish NET Guidelines (SCONET) to improve the quality of care for patients across Scotland. His full presentation can be seen here.

Professor Nick Reed, a consultant in clinical oncology at the Beatson Oncology Centre,

Glasgow, gave an overview of the different NETs and their management, pointing out that there is now an increasing incidence of NETs since the early 1970s which may partly be due to better recognition.

He outlined the options for treatment to manage the different forms of the condition such as surgery and somatostatin analogues (a major breakthrough in the 1980s). Going forward he explained that they are applying for an ENETS’ (European Neuroendocrine Tumour Society) Centre of Excellence for Scotland which will lead to better patient access to care. The UK currently has 9 centres. He also explained that they are monitoring exciting new drugs, such as Everolimus and Telotristat which are currently being trialled. Prof Reeds presentations can be seen here and here

Irene Wotherspoon is the first NET Nurse in Scotland who was appointed for the West of Scotland in June 2016. She explained that she has initially been guided by the NET Patient Survey that was conducted by Cathy Beauvoir “Understanding the Patient Experience” (the survey can be accessed on the NET Patient Foundation website) and has met with patients and other NET nurses. She is hoping to develop nurse led clinics, clinical assessments and non medical prescribing with a view to increasing the speed and efficiency with which patients get treated.

Trustees from the Ann Edgar Trust explained the role of the Trust its aims and goals. The approach to NET Natter Groups in Scotland - informal support meetings which offer an opportunity to meet with others in the local area who are affected by NETs. Other initiatives and partnerships were summarised including the Submission to the Scottish Medicines Consortium due by the end of October and a Consultation event with Minister for Social Security run by The Alliance on 28 September in Glasgow.

The day concluded with time for participants to have a good chat with each other - a NET Natter Meeting.

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