As many of you know our Action Plan is well under way. As we gear up towards the end of completion we are asking for your help.
Shortly you’ll be seeing our refreshed website with a dedicated page on how the NET community can assist in driving awareness of the Action Plan and driving a brighter pathway forward for all NET patients. We know patients tell the most compelling stories, the general public, media and MPs like to hear it “straight from the horses mouth’’ so to speak. These actions urgently need government support like other cancers receive, especially for our specialist telehealth nurse service. Your voice will make a difference.
With this in mind we ask for your assistance in sharing recorded video stories around 4 of our key Action Points. We would like as many patients and carers as possible to upload a short video on how your chosen action point has affected you. And importantly what change would mean in your life (or future patients) when these action points are put in to place.
Action one: Support for specialist NET tele-health nurses and oncology social workers. There is urgent need for service expansion. What would it mean to you to have a Nurse and/or Oncology Social worker in each state of Australia?
Action two: Accurate information and resources. We work incredibly hard to update our website daily with a small team. Development of multi-media resources and information is urgently needed. We would ideally like for patients to have access to wider range of information, updated more often, and in more languages. We want patients and carers to have a suite of videos to share with family and friends to easily explain their diagnosis and treatment.
Action three: Enhanced education for healthcare professionals. Increasing clinical awareness of NETs and optimal patient care. What difference would it make to you if the majority of health care professionals were more educated on NETs?
Action four: National Awareness Campaign. Implementation of a National Awareness Campaign to educate the general public on NETs. What difference would it have made to you if you were aware of NETs when you were diagnosed? What difference would it make to you if when you told people of your diagnosis the understood what NETs is?
Criteria
- Please introduce yourself and advise if you are a patient or carer at start of video.
- We may be making a collage of these videos, please film the recording in landscape with a solid colour wall. If possible wear a solid colour shirt (black would be even better).
- We know each patient has a web of stories, for this purpose, please focus on the one action point (but feel free to send in multiple videos)
FAQs:
Can I choose more than one action point? Yes! Choose as many as you like, with a separate video for each action please.
Where do I send this video to: adie@neuroendocrine.org.au
Why 45 seconds? So that you’re easily able to email the video to us via drop box or wetransfer.
Is there a time frame? The sooner the better. You’ll soon be able to upload these directly to our website
Is there anyone I can call for assistance? Please do! Call Adie on 0407 718 822 or adie@neuroendocrine.org.au
