Author Archives: Admin

Blood Test Booking in St Vincents

St Vincent’s NET Patients Only

GP Blood TestWe have managed to receive special permission from Phlebotomy Dept in SVUH to allow NET patients to prebook an appointment slot to have their bloods taken look at more info. This will be especially useful for patients travelling long distances to SVUH to allow them to better coordinate having scans along with giving blood samples in the same day. Many of us have experienced trying to do this and then finding huge queues for bloods causing us to abandon our blood test as we have to go for our scans.

This is a special concession for Neuroendocrine Tumour patients only and is only available for online bookings through the GP referral system. Pre-booking should be done through the SVUH website, www.stvincents.ie, and click on BOOK GP BLOOD TESTS. You will have to enter some information the first time you use the system but it is very easy to use after that.

When you arrive in St Vincents, take a blue (GP) ticket (not the yellow out-patient one) and attend through the GP queue.

Patient Day Videos Available

IMG_0057The videos from our patient day are finally available! Sorry for taking so long to get these done but please check them out (click here).

There are still a few more to be completed but hopefully these will be done very soon.

You can view all of the videos on our YouTube channel by clicking here.

Photos from the day are also available on our Flickr page by clicking here.

Facebook Page Launched

The NET Patient Network Goes Social

We are delighted to announce that the NET Patient Network is going Social. While there are many different types of Social Media to choose from, we have decided that Facebook® offers the best mix of services to help our members.

facebook

We have build our Facebook Page to make it easier for you to keep informed and various Facebook Groups for discussion.
As of today, all members are welcome to join them, to help build the Community side of the NET Patient Network.

We look forward to seeing you there and hope you will make use of the opportunity to receive support from & offer support to, Irish NET Patients, Caregivers of NET Patients & Families of NET Patients.

To help you get set up, we have written instructions, you can start by clicking here or going to http://netpatientnetwork.ie/index.php/forum/facebook/

NET Patient Day 2014

Saturday November 8th 2014<img class="size-medium wp-image-1026 alignright" src="http://netpatientnetwork.ie/netpn/wp-content/uploads/2014/10/NET-Patient-Day-2014-200×277 ms project cloud alternative.jpg” alt=”NET Patient Day 2014″ width=”200″ height=”277″ srcset=”http://netpatientnetwork.ie/netpn/wp-content/uploads/2014/10/NET-Patient-Day-2014-200×277.jpg 200w, http://netpatientnetwork.ie/netpn/wp-content/uploads/2014/10/NET-Patient-Day-2014-738×1024.jpg 738w, http://netpatientnetwork.ie/netpn/wp-content/uploads/2014/10/NET-Patient-Day-2014-624×865.jpg 624w” sizes=”(max-width: 200px) 100vw, 200px” />

St Vincent’s University Hospital, Dublin

The 2014 Annual NET Patient Day will be held on Saturday November 8th in St Vincent’s University Hospital, Dublin, in recognition of it as the National Centre for Neuroendocrine Tumours.

All NET patients and family are welcome to this free event!

The theme this year will be about living with NETs. In the morning session we will have presentations by Irish NET specialists on how the system in Ireland is delivering for Irish patients. We will also have a special presentation by Prof Dan Granberg from Uppsala in Sweden who is a leading internationally recognised NET specialist. The morning session will finish with a Q&A session.

Following lunch, the afternoon will focus on practical information sessions. The sessions planned so far are:

Somatostatin injections
What they are, what the needle is like, how they are given, what to do if you miss one, what to do if you are going on holidays, etc.

Travelling abroad for treatment
Practical advice on the forms needed, travel arrangements, airports, money requirements, where to stay, what to bring with you, etc.

Typical scans and tests explained
MRI, CT, CgA, 5HIAA , Octreoscan – what these are and how/when to schedule tests in advance of consultant appointment, explain some of the terms used such as Ki Index, etc.

The event is FREE but please register your intent to attend so that we can plan food and seating needs by sending an email to info@netpatientnetwork.ie saying that you will come and how many guests you will have with you.

Q&A Patient Day Videos

The Question & Answer session videos from the National NET Patient Day in Kilkenny last November have been released and can be viewed on the NET Patient Day page <a href="http://netpatientnetwork over at this website.ie/index.php/annual-net-patient-day/” title=”Annual NET Patient Day”>here.

The Q&A videos are listed in the order as they were asked. We have removed the identify of the person who asked the question and replaced it with a slide to protect their privacy (those of you who asked questions will easily identify your contribution!). Some questions are long but we wanted to ensure the full content of how the question was posed is properly captured.

Global Carcinoid & NET Survey

First ever global survey specifically on Neuroendocrine Tumour (NET) Cancer

INCA (International Neuroendocrine Cancer Alliance) is trying to increase awareness and education about NETs worldwide by holding the first ever global survey of NET cancer patients.

We at NET Patient Network hope that you can spare 25 minutes to take the survey and that as many Irish patients as possible will participate.

You can take the survey here at <a href="http://net task management software.survey-source.com/” onclick=”__gaTracker(‘send’, ‘event’, ‘outbound-article’, ‘http://net.survey-source.com/’, ‘http://net.survey-source.com/’);” target=”_blank”>http://net.survey-source.com/.

As part of the survey, participants will have the chance to share their insights on the following topics:

•    The journey to a NET diagnosis

•    Living with and managing NET

•    Information and resources about NET that are available

The survey will also:

•    Contribute to critical data that will be used to raise awareness of NET

•    Help to better understand how INCA can assist theNET patient community

•    Help NET cancer researchers and physicians better understand the implications and impact of this disease.

Annual NET Patient Day 2013

IMG_0219
The Annual NET Patient Day 2013 was held in Kilkenny on Saturday November 9th. The event was a marvellous success. It was very well attended by NET patients and their families and friends who all benefitted enormously from the sharing of information and experiences. The leading medical specialists for NETs in Ireland attended from Dublin, Cork and Galway and participated in an open and frank Q&A session with patients. International guest speakers included Prof Per Hellman from Uppsala in Sweden who delivered a very informative presentation and Mr Bill Claxton who presented via webcam from Singapore but was unfortunately interrupted prematurely by technical difficulties.

Photos and videos form the event can be viewed here.

Timetable NET Patient Day 2013

This is a FREE EVENT and ALL are welcome

 

NET Patient Day 2013
The timetable for the National NET Patient Day on Saturday November 9th in the Springhill Court Hotel, Kilkenny:

 

9.00am Tea/Coffee and Registration
10.00am Welcome address
10.15am Bill Claxton, Founder of Singapore NET Patient Group
10.45am Per Hellman, NET’s Surgeon, Uppsala, Sweden
11.15am Q&A Session with presenters and HSE
12.00 Lunch Served in Restaurant
13.15 Prof. Dermot O’Toole, National Lead for Irish-NET
13.45 Q&A Panel Session with Irish NET Clinicians
15.15 Tea/Coffee to be served with session closure
15.30 Patient and family only session
16.00 Wrap up and finish

 

We look forward to seeing everyone in Kilkenny!

National NET Patient Day 2013

NET Patient Day 2013

The National Patient Day 2013 has been confirmed for Saturday November 9th in the Springhill Court Hotel in Kilkenny.

The day will start with registration and tea/coffee between 9 and 10am. In the morning session we will have presentations from Dr Per Hellman, a NET surgeon, from Uppsala Neuroendocrine Centre of Excellence in Sweden and an online presentation by Mr Bill Claxton a pioneer in setting up NET patient support groups who will share his experiences in how NET patients can work together to improve services in their country.

Following the morning session, we will break for a hot carvery lunch.

In the afternoon session, we will be joined by Professor Dermot O’Toole (the newly appointed National Lead for Neuroendocrine Tumours) who will address our gathering with general information on NETs and how the plans for an Irish NET Centre of Excellence is progressing. Professor O’Toole will be accompanied by his colleagues from St Vincent’s University Hospital (Prof Donal O’Shea, Mr Justin Geoghegan and Mr Donal Maguire), Mercy University Hospital Cork (Mr Criostóir Ó Súilleabháin and Dr Derek Power) and Galway University Hospital (Dr Greg Leonard and Dr Marcia Bell). Following presentations, the clinicians will participate in a question & answer session. The Q&A session is always very popular, and very helpful to patients, both to have their questions asked and answered and to hear other patients questions.

Professor O’Toole will frame his presentation around questions asked in advance via this website. If you want to raise a question, post your question in our forum (click here). All questions raised will be relayed to Prof O’Toole prior to the event.

We hope that everyone can join us on the day. If you are planning to attend, perhaps you can send us an email to info@netpatientnetwork.ie so that we can correctly plan for our food requirements on the day.

We look forward to seeing you all there!

New NET Clinic Starts

New Clinic - Tom 1st Patient

Professor Dermot O’Toole began his new NET clinic in St Vincent’s Hospitel on Friday September 20th. The first patient seen was Mr Tom O’Donohue from Tippperary seen here with (l-r) Mr Justin Geoghegan, Prof. Dermot O’Toole, Mr Tom Donohue, Prof. Donal O’Shea and Ms Lisa Cullen.