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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We are aware that people do get fed up with surveys but this one is to inform the Trust's submission to the Scottish Medicines Consortium (SMC) on a new medicine. Xermelo is being assessed by SMC for the treatment of carcinoid syndrome diarrhoea in combination with somatostatin analogue (SSA) therapy in adults inadequately controlled by SSA therapy. If you are being treated in Scotland and have carcinoid syndrome then completing this survey would be very helpful. You will note that there are a number of comments boxes, please use those. SMC have said it is very important to try to include quotes or statements from patients and/or carers - these can be very powerful and add valuable impact to the overall submission. All of this survey is anonymous. Thank you for your help. Any questions please ask. Link to survey below

https://www.surveymonkey.co.uk/r/H7X2SV3

For people outside Scotland there is a separate survey link below

https://www.surveymonkey.co.uk/r/BZ2XZXD

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

Maggie's in Edinburgh have agreed to run another event for us. This time a Stress Management workshop at 2:00 pm on Sunday 10 December. Some of us might find this helpful in the run-up to the festive season. All are very welcome but please do let us know if you wish to attend it helps us with setting up the space at Maggie's.

Full directions for finding Maggie's here

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T: 07376 251249

E: info@taect.scot

© The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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