Network News Monday 6 August 2018

Network News
The Network is in a process of renewal. We have joined with Volunteering Auckland to help strengthen our work with volunteers. We have many supporters throughout New Zealand. Everyone is making a valuable contribution towards our aims. With the help of volunteers we connect, support and advocate for New Zealanders affected by head and neck cancer .
Working with Volunteering Auckland we are ensuring all our volunteers are well supported. We are mindful to create safe environments for both volunteers and patients+ (caregivers, and family/whanau) . There will be more news as we advance our plan.
If you would like to take on the role of a Network Volunteer, please contact us . We are looking for people to work as connectors, supporters, advocates, and in governance roles .


Upcoming Events

We are adding an Upcoming Events section to our Home page. This will make it easier for you to know what events are taking place near you. If you have an event we are very happy to add it to the list. Just email us. ing Events
Auckland/Northland Service Improvement
We are continuing our work with the Auckland/Northland service. Thank you to everyone who filled out our Annual Survey, as this is good quality information to share in our work on service improvement. If you want to add your thoughts you can do so here.

Did you request a treatment plan? Just ask #justask

You may not be aware that you can ask for your treatment plan options in writing. The New Zealand Patient Code of Rights sates in Right 6 (4) Every consumer has the right to receive, on request, a written summary of the information provided. Good decisions about treatment are a result of good information provided to the patient and their caregivers, family/whanau. So it is useful to have something to take away from a clinical consultation and share with your support team. 

The ASCO Value in Cancer Care Task Force suggests patients need an understanding of the possible clinical benefits and harms of treatment options available to them. For some this will include the financial aspects of their decision making. Some patients may choose private treatment, and are willing or able to bear those costs. So if you are facing treatment, remember just ask for a written summary.

Didn't receive a survivorship plan following treatment?

Well, there is now the technology to create your own. I highly recommend completing the ONCOLIFE survey. At the end of it you will receive a survivorship plan tailored to your particular situation. You can use that plan to manage your own care, and converse with your health professionals. It is a wonderful tool.

If you want to know some more about the research behind patient driven survivorship plans you can read this article or simply enjoy this little bit of it. prom-153919-patient-reported-outcomes-in-head-and-neck-cancer-prospecti-072618.pdf

For head and neck cancer in particular, the incorporation of Patient Reported Outcomes (PROs)has been appreciated by physicians to enhance their assessment of late symptoms. However, knowledge is only one aspect of survivorship, as an actionable plan to maximize posttreatment quality of life and function is the end goal. On the surface Survivorship Care Plans (SCPs)appear a natural offshoot of normal postoncological treatment follow-up. There are many resources available such as the National Comprehensive Cancer Network clinical practice guidelines that provide advice on posttreatment management such as disease surveillance intervals and screening modalities;1 however, such guidelines do not emphasize toxicity management or psychosocial aspects of survivorship. This is where incorporation of PROs into SCPs can lead to follow-up plans tailored to the survivor.

LIVESTRONG Care Plan Click the link here to create your own care plan.

Annual Appeal to our Supporters
This is also the time of year we reach out to our community for support for the year ahead.
The Network mission is to ensure no one should face head and neck cancer alone. The Network connects many people around New Zealand affected by head and neck cancer. We provide patients, caregivers, and family/whanau with support resources. We encourage patients to support each other and share experiences. We provide posters, cards, leaflets, and other resources to support our vision.
We ask you to donate to our Network to fund the year ahead. We need $3500 each year to carry out our work. Last year we raised $1500 from our annual appeal. You can give to the Network through Give a Little or deposit directly to our bank account.
We thank you for your support and look forward to another year of our work to connect, support and advocate for those affected by head and neck cancer .
The People of our Network
Our Network continues to grow. We are New Zealand focused, and welcome new folk from around the world. We are all connected by our head and neck cancer experiences.  We  are delighted  to have 984Twitter followers, 170 website members, and 556 LinkedIn contacts . If you want to connect with us through any of these channels you can do so here.  Our website, ,  Facebook Page,  Twitter, , LinkedIn, 
New Members
We welcome to our Network...
Some of the new folk, will be in your area.  As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. Don't forget our Groups. We have something for everyone, and you can add a comment in the Forum to make contact with the members of your group.
Most Popular Posts - 
2. The campaign to raise awareness of World Head and Neck Cancer Day
Diana Ayling,
Chair Head and Neck Cancer Support Network
E-mail me when people leave their comments –

Diana Ayling

You need to be a member of Head & Neck Cancer Support Network to add comments!

Join Head & Neck Cancer Support Network

Happy with your treatment experience?

Please share your thoughts on your recent treatment experience. This can be at any stage of your cancer journey, pre treatment, treatment, post treatment, and survivorship. 

You can take our survey as many times as you like, and we encourage you to have your family/whanau and carers share their thoughts as well. Click the link to share your thoughts.



Cancer Dictionary