A new professionally designed website has been launched by NET Patient Network to provide more medical information, particularly with an Irish focus. The new website allows us to better inform NET patients of news and events, to provide a smoother registration facility and to establish an active and helpful community of Irish NET patients.
In the UK, a wallet sized card was produced by the NET Patient Foundation for NET patients to carry on their person. The purpose of this card is to identify the holder to medical personnel as a NET patient who might suffer a carcinoid crisis in the event of having to receive emergency surgery or other treatment. The card also doubles as a “toilet card” so that patients may request use of facilities when out and about more helpful hints.
NET Patient Network is considering the design of such a card for use here in Ireland. A bracelet or necklace may be more effective than a wallet card for emergency response personnel. Of course, anyone can decide to have a suitable card, bracelet or necklace made for themselves.
UPDATE: Download the Carcinoid Crisis Card here.
A new NET nurse specialist, Ms Lisa Cullen, has been appointed and is now in place in St Vincent’s Hospital in Dublin best project management software. This appointment is part of the strategy to create a NET Centre of Excellence. The new nurse specialist is shared between NETs and Liver Cancer support and operates every Thursday and Friday. We welcome the appointment and look forward to the continued development of a Centre of Excellence. NET Patient Network will advocate for the extension of this nursing facility to a 5-day week. Lisa may be contacted by email at firstname.lastname@example.org or at 01-2213599.
Many NET patients are concerned with the possibility of suffering from a carcinoid crisis during surgery as a result of receiving an anesthetic. Carcinoid crisis can be catastrophic if the medical staff are not prepared for such an event. Preparation requires the availability of sandostatin injections to prevent or combat carcinoid crisis if it should occur. Some Irish patients have experienced serious such crises during surgery. Other jurisdictions abroad have recognised this need and implemented ‘special protocols’ accordingly project planning software. NET Patient Network has written to Dr Susan O’Reilly of the NCCP asking her to investigate if a special protocol for NET patients is required in Ireland.
The NCCP (National Cancer Care Program) has selected Neuroendocrine Tumours as one of the rare cancers that it wishes to examine as part of the restructuring of cancer care in Ireland. At a conference in Trinity College in November, the NCCP, the HSE and medical professionals in Ireland were joined by recognised international specialists in neuroendocrine tumours. A new unified strategy was agreed which would strive to create a centre of excellence in NETs in Ireland, linking St Vincent’s Hospital in Dublin with Mercy Hospital Cork and Galway University Hospital. A dedicated NET Consultant will be appointed to head this new centre try this site.
A special National NET Patients Day was held in Trinity College on November 10th to coincide with the Worldwide NET Cancer Awareness Day. Dr Susan O’Reilly of the National Cancer Care Programme (NCCP) opened the patient event and gave an overview of the NCCP’s plan for NETs treatments in Ireland. Irish and International experts in the field of NETs participated in a rewarding open and robust question and answer session between doctors and patients go to the website.
Following the open forum, the NET patients held an inaugural meeting of the NET Patient Network and voted a committee to oversee the setup and running of this new patient support organisation. NET Patient Network is the culmination of much hard effort on the part of Tommie Gorman (RTE Northern Editor) to effect a capable patient support structure linking patients, clinicians and the medical establishment to ensure the optimum and effective treatment of Irish NET patients.
The inaugural meeting of the Irish Neuroendocrine Neoplasm Group was held at Trinity College Dublin. Irish and international experts in carcinoid/NETs gathered to discuss advances in the field, diagnostic and therapeutic practices currently available in Ireland, as well as areas where Ireland is falling behind, especially in specialized nuclear medicine diagnostic and therapy tools. Commenting on the meeting, organiser and co-chair of the Scientific Committee, Dr Dermot O’Toole, Associate Professor of Clinical Medicine, TCD said: “This meeting afforded the opportunity for a diverse range of physicians and surgeons with an interest in this disease to come together for an educational day but the meeting also formed the backbone in paving the way for developing a recognised Irish Network to provide care for patients with this disease. There is a strong kernel of real experts in this country but concentrating efforts and resources is essential in forwarding a unified and NCCP-recognised structure essential in aligning practices according to recognised international standards.”
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