Head & Neck Cancer Support Network Trust Community News August 2025

Written By Head and Neck Cancer Support Network
 

  • Make Sense Campaign: 13th Head & Neck Cancer Awareness Week September 15–20, 2025 — global awareness initiative with events, survivor stories, resource kit

    World Patient Safety Day — September 17

    • WHO‑backed day focused on promoting safety in healthcare environments, relevant to patients undergoing treatment for head and neck cancer. This year the focus is on the newborn child and every child.

    World Lymphoma Awareness Day — September 15, relevant for those affected by lymphoma in head and neck regions

Exciting News: A New Support Group for Tai Tokerau Northland

We are delighted to share some wonderful news with our community. Thanks to new funding from Community Grants, we will be supporting the establishment of a head and neck cancer support group in Tai Tokerau Northland during 2026/7.

This pilot project is an important step in reaching out to people living with head and neck cancer in the region. The new group will be locally based, run for and by the community, with our team providing guidance and resources. The plan is to hold two gatherings each year, bringing patients, survivors, families, and whānau together to share experiences, offer encouragement, and build connections.

We know that people in Northland face extra challenges in accessing treatment and support due to distance and travel. Having a local group will help reduce isolation and ensure that everyone has access to compassionate care and peer support close to home.

We are excited to walk alongside the Northland community as this new initiative takes shape, and we will keep you updated on meeting dates and ways to get involved. If you are interested in this project please contact us at headandnecknetwork@gmail.com

Together, we are building stronger support networks across Aotearoa.

Seeking Volunteers for The Explorers Facebook group

Our closed Facebook group, The Explorers, (LINK), is one of the most important lifelines we offer. With over 200 members, it is often the first place people turn when they are newly diagnosed, searching for information, or simply in need of a supportive community that understands the journey of head and neck cancer.

To keep this space safe, welcoming, and supportive, we rely on volunteers to help moderate discussions, approve new members, and guide our community. We are now looking for additional moderators and administrators to join our team.

Many of our long-term members have benefited from the group for years. If you feel ready to give back, this is a wonderful way to make a difference. The role is flexible, and training and support will be provided.

If you are interested in volunteering or would like to learn more about what’s involved, please contact us at headandnecknetwork@gmail.com.

Together, we can ensure that The Explorers continues to be a safe and supportive space for everyone.

 
 

The Light Keepers is underway

We are delighted that 27 people engaged with our Light Keepers Toolkit over the last month. The Light Keepers Toolkit is designed especially for those who support someone with head and neck cancer — partners, family members, friends, and carers. It offers practical advice, emotional support, and insights from others who’ve walked a similar path.

By engaging with the toolkit, our community members have discovered:

  • 🕯️ Guidance on how to support a loved one through diagnosis, treatment, and recovery

  • 🧭 Tools to care for their wellbeing while caregiving

  • 🤝 Connection with others who understand the challenges and rewards of being a support person

  • 💬 Language to communicate effectively with whānau, clinicians, and the person they’re supporting

Whether you are new to caregiving or have been walking alongside someone for some time, the Light Keepers Toolkit is a gentle companion and a beacon in uncertain times.

We encourage everyone in our community — patients and supporters alike — to explore the toolkit and share it with someone who might need a guiding light.

🕯️ Visit the Light Keepers Toolkit here: https://www.headandneck.org.nz/light-keepers

Campaigns and Consultations

The Health Voice in Aotearoa New Zealand is increasingly active in seeking better resources and services for those in need of health and disability support. Here are the current campaigns where you might like to participate.

https://www.dentalforall.nz/

Good oral health is an important foundation for wellbeing and should be valued as part of our public health system. Currently, oral health is treated differently to the rest of our health, and 40% of adults can’t afford the care that they need. Free and universal oral healthcare would mean everyone in Aotearoa could afford the regular check-ups and care they need, unlocking pathways for better oral health for everyone. https://www.dentalforall.nz/

Medicines New Zealand

A new nationwide poll has revealed that a large number of New Zealanders are very concerned about the country’s poor public access to modern medicines, and they want change. 

Ministry for Disabled People Strategy Consultation

The Ministry for Disabled People developed a strategy giving direction to government agencies on issues that disabled people, tāngata whaikaha Māori and whānau said are important. It shows where change is needed so they can lead, thrive, and fully take part in their communities. The strategy is open for feedback.

Patient Voice Aotearoa

The Buller Declaration was officially launched in Westport on Saturday, 28 September (hence the reference to Buller) after 2000 people took part in a silent march to the clock tower over the state of healthcare in Buller.

To start the Declaration, the Mayor of Buller signed, as did representatives of the New Zealand Nurses Organisation, the Association of Salaried Medical Specialists, the Rural Health Network, and the New Zealand Royal College of General Practitioners. After they had signed, we then invited the public to do likewise. You can sign the petition or be there to present it at Parliament.

Sign the petition here

Rare Disorders New Zealand

In July 2024, the Ministry of Health released New Zealand's first Rare Disorders Strategy, outlining the Government's intentions to improve health outcomes for people living with a rare disorder.

While this was a huge milestone for the rare disorders community, there has been no action since to begin implementing the intentions in the Strategy. Without action, the Strategy is not worth the paper it is written on.

Rare Disorders NZ has launched a petition calling for Te Whatu Ora - Health NZ to urgently begin planning and implementing the Rare Disorders Strategy.

Sign the petition here.

Head and Neck Cancer Research in Aotearoa New Zealand

Melanie Chan is undertaking her doctoral research into head and neck cancer survivorship. If you are interested in sharing your story please contact Melanie at melanieannemei-lin.chan@vuw.ac.nz

Luke Meehan published his research into head and neck cancer and the need for greater psychosocial support for head and neck cancer patients.

LINK

Lauren Garner is a Master of Health Psychology student at Te Herenga Waka - Victoria University of Wellington. For her thesis, she is researching how parents with dependent children experience psychosocial support while facing a diagnosis and treatment for tongue cancer. This project is supervised by Dr Ally Gibson, an experienced cancer support researcher, with consultation from the Regional Head and Neck Cancer Service at Wellington Hospital and Dr Swee Tan (ONZM MBBS FRACS PhD) at the Regional Head and Neck and Skull Base Surgery Service at Hutt Hospital. To find our more detail and contact Lauren see…

https://www.headandneck.org.nz/research-project-two

🌟 From the Chair

Kia ora friends,

As Chair of the Head and Neck Cancer Support Network, I want to acknowledge the outstanding work being done by advocacy groups across Aotearoa New Zealand to improve treatment, care, and support for people living with cancer. Change does not happen overnight—it takes persistence, collaboration, and most importantly, the collective voice of the people.

I also want to commend researchers Melanie Chan, Luke Meehan, and Lauren Garner for their valuable head and neck cancer–specific research. Their work shines a much-needed light on the unique challenges faced by our community and helps guide improvements in care.

This is a busy and important time for all of us. By raising our voices together—patients, whānau, clinicians, advocates, and researchers—we can ensure that head and neck cancer receives the attention and resources it deserves.

Don’t forget to check out the advancements in head and neck cancer above. There is always something new and there is always more hope.

With aroha,
Diana Ayling
Chair, Head and Neck Cancer Support Network Trust




Head and Neck Cancer Support Network
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Head & Neck Cancer Support Network Trust Community News July 2025