Network News 2 October 2017

Advocacy for people affected by head and neck cancer - "Nothing About Us Without Us!

The Latin phrase is,  Nihil de nobis, sine nobis. The idea; that no policy should be decided by any representative, without the full and direct participation of those affected by that policy. This principle extends to national, local and sector policy making. It gives the opportunity for full participation from service users, consumers, and participants. It is a powerful concept for those often marginalised from political, social, and economic opportunities. It means patients have a legitimate and valuable role to play in the setting of health policy in their sector. 

in 2013, consumers were represented at the national level, in the development of the Head and Neck Standards of Service Provision. The standards were developed by the Ministry of Health, in consultation with a range of head and neck cancer health stakeholders.  The process was part of the Faster Cancer Treatment programme, to ensure timely clinical care for patients with cancer. The purpose of the standard, was to promote nationally coordinated and consistent standards of service provision across New Zealand. Brian Sheppard, from the Central Cancer Network, was the Consumer Representative. In 2018, the standards, which have remained provisional, are due for revision. Your Network will ensure patients, carers, and their families have adequate representation in the review process. 

At the local level, I, as your Chair, was part of the review of head and neck services in the Auckland/Northland region. The work continues. We are invited to work with Arend Merrie, Director of Surgical Services, at the ADHB, to map a Patient Pathway for head and neck cancer patients.  I am hopeful of a new more holistic approach to head and neck cancer patient treatment care and support. This advocacy work takes time, careful consideration and relationship building. I am hopeful your Network will continue to have a role to play in in future head and neck service developments. 

At a very personal level, your Network supports patients, carers, and their families as they negotiate the current Head and Neck Cancer Patient Pathway. We provide resources on our website, support through our Facebook group, hold meetings in Auckland as a support group. We distribute publications and resources to head and neck units throughout New Zealand. This can be very personal work, and it is very rewarding. I thank our committee for the generous giving of time, energy and experience to supporting those affected by head and neck cancer. If you have ideas, or feel there is more we can do please let us know. Email

Network News

Our Network continues to grow. We are delighted to have 584 Twitter followers, 198 people in our Facebook group, 111 website members, and 405 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, Group, Twitter,, LinkedIn,

New Members

We welcome to our community, Kim Gear, Auckland, Steve Woods, Kansas City, Anelia Myburgh, Melbourne, Delwyn Lopez. Tauranga, Kelly Bowmar, Auckland.

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. 

Popular Posts
As new people join our network or are diagnosed with head and neck cancer they access a number of our articles and resources. For the last two weeks these were the most read posts. 

Surviving Stage 4 Tongue Cancer: Investigator

Steve Woods, on the left with a fellow cancer patient,  is one of our American members from Kansas City, Missouri. He put this story on our closed Facebook page and I thought it was too good not to share. 


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What is HBO like? Thursday Investigator

Dunedin member Sue McDonnell who had tongue cancer a year ago was offered hyperbaric oxygen treatment in Christchurch to help heal the recurring ulcers in her mouth. HBO is usually given to head and neck cancer patients who need dental extractions but it is also good for other problems with healing. There is more information under the article.…

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Who is that Fellow?

Who is a…

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Ka kite ano,

Diana Ayling

Chair Head and Neck Cancer Survivors' Support Network

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Authored by Diana Ayling

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