NEWS

Network News Monday 13 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 headandnecknetwork@gmail.com. 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. headandnecknetwork@gmail.com
 
 
 
 
 
 
 
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. https://www.surveymonkey.com/r/2018HNCSN
 
HNC Patient Book - Order your FREE copy now! 
The 2018 Second Edition of the Australian Head and Neck Cancer Patient & Carers Book was launched in July 2018 at the ANZHNCS Conference in Melbourne. The book is a patient led initiative coordinated by former patient and Beyond Five Ambassador, Julie McCrossin, and fellow former patient Marty Doyle, coordinator of the Head and Neck Cancer Patient Support Group in Queensland.

The book shares many personal head and neck cancer stories from patients, family and carers from all over Australia and New Zealand. In addition, the book highlights some of the people who work in the head and neck multidisciplinary team who talk about important aspects of care at specific points in the head and neck cancer journey.

To order FREE hard copies of the 2018 Australian issue email: juliemccrossin@bigpond.com or text 0408 699 166 (text messages only please) or to download an e-copy visit: http://ow.ly/W40I50ib3LS Back to top. 
 

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015427/

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.https://oncolife.oncolink.org/form/oncolife_v11/

 
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 depositdirectly to our bank account. https://givealittle.co.nz/donate/org/headandnecknetwork
 
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.
 
Latest News from Head and Neck Cancer from around the world
 
 
 

Mercy Ascot Team Lead the Way

MercyAscot Head and Neck Service proudly hosted an engaging education event for GPs, ‘Early diagnosis and Post-Operative Care of Head and Neck Cancer’ on Monday, July 23.

A number of…

Read more…

 

 

Dr. Katzel on Why Women With Head and Neck Cancer are Undertreated

Some answers on why women with HNC receive less treatment than men.…

Read more…
 
Diana Ayling,
Chair Head and Neck Cancer Support Network
E-mail me when people leave their comments –

Diana Ayling

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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.

https://www.surveymonkey.com/r/PatientNZ

 

 

Upcoming Events

Cancer Dictionary