News on Supply of Somatuline Autogel

As discussions over the UK exit from the European Community intensify concerns have been expressed about the post-Brexit supply of some drugs used in the treatment of NETs.  The Trust recently contacted Ipsen to ask about ongoing supplies , and this is what they said:

Ipsen is advanced in its preparations for Brexit and the potential scenarios and challenges that this may introduce. The utmost priority is to ensure there is no disruption to patient supply of medicines. With one of our medicines manufactured in the UK and distributed to over 80 territories worldwide this remains our priority for patients in the UK, EU and beyond. We take this responsibility seriously and have been preparing for the event of a “hard Brexit” or “no deal” scenario since September 2016. We’ve taken steps to secure additional supply where necessary, in addition to being proactive in other ways to ensure there is no disruption to patients.

Steve Chung
Senior Medical Information Officer, Ipsen Medical Information UK & Ireland

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10th November 2019

We were delighted to welcome over seventy delegates to our 2019 NETs Information Day for patients and their families. The gathering took place at the Edinburgh Park Novotel Hotel.

Following a light lunch delegates heard from a selection of speakers:

Our Chair, David Drummond, reported on The Trust’s activities over the last year, and thanked all those who had been involved in fund raising and other initiatives to help promote our charity.

Our recently retired Trustee, Margaret Boe, updated us on the splendid progress we have been making in developing local NET Natter Groups across the country. In addition to our initial Edinburgh group we also now have local groups in Ayrshire, Glasgow, Fife and Aberdeen – with a possibility of new groups forming in Falkirk and Inverness. Watch this space!

Our guest speaker, Lucy Dornan, from the Beatson Hospital in Glasgow, told patients how the new PRRT facility at the hospital was progressing. Nikie Jervis from our partner organisation down south, the NET Patient Foundation offered her advice on what patients can do to help their wellbeing.

We then heard from Professor Mark Strachan about exciting new developments in NETs, including a new type of scan, Dota-Octreotate Pet, and advances in immunotherapy treatments.

Mark’s colleague, Katie Gibson, summarised the various sources of help and support available to patients and Dr Lucy Wall wound up the day with a report on her NET Nutrition research project.

Speakers at our Patient Information Day: left to right

Margaret Boe (Trustee); Prof Mark Strachan (Trustee); David Drummond (Chair); Dr Lucy Wall; Lucy Dornan; Nikie Jervis; Katie Gibson (Trustee)

Craig's video for World Cancer Day 4 February 2018.

View the video here

You can also read the report in his local paper here

If you see any other reports on Craig's story please share them with us. Great publicity for NETs #WECANICAN #WORLDCANCERDAY #LETSTALKABOUTNETS

Our friends at the Net Patient Foundation have produced a report which was launched on November 10 Net Cancer Day.

The report is focused on improving outcomes for patients with NETs in Scotland. The report entitled ‘Widening the NET’, outlines ‘ambitions’ and ‘actions’ to ensure that progress continues to be made in Scottish NET care. It is the first report of its kind focused solely on Scottish patients with a malignant NET and is based on interviews with medical experts and patients from around the country.You can download the full report just click on the PDF below. The report can be viewed here