NEWS

Network News - Monday 27 May 2019

Kia ora tatou,

Network News

Head and Neck Cancer Community Concerns

In an Open Letter our Chair, Diana Ayling, addresses community concerns that have arisen over the last year. As the New Zealand health system faces significant pressures, it is important we as a community work collaboratively together, with one voice. Putting the past behind us is part of that process. Click here to read more....

Annual Members Survey Results

The Network carries out a Members Survey each year. We recently completed the Survey and I wanted to share the results with you.

We gathered some valuable data which helps us understand how we are tracking and how our people are feeling. We are pleased to see positive trends across all areas measured, which is heartening.

Some of you provided some comments. We hope we addressed these issues in our Annual Report. we strongly encourage everyone to read this document, and hope it answers any questions or concerns people might have. Click here to read the report. http://headandneck.org.nz/agm

We have appreciated your participation and willingness to provide feedback.  We had some great comments that will inform our work over the next year.

Our Net Promoter score was 0, (50/50 negative and postive) which means we need to do a lot more work to ensure members would recommend the Network to others. To see our results click here.

Members  Support

We have created a new category of member for the Network website - Friends of the Network. We know there are family, and friends of patients who want to support the Network, but do not feel they can as a "patient" classification. With the new category of member we hope you will feel you can share the community and website with others. When members sign up, they will choose their category and receive their own unique communications. 

If you want to update your profile, add a photo, or change your category you can do so by logging in to the website, and clicking the tab MYPAGE. 

Welcome to new members. Deb Seddon and Kevin Montague.

Website Support

We are working on rebranding the Network, and redeveloping the website. If you would like to make suggestions on the redevelopment you can do so here….

 

 

National Connections

Heather Anderson and Diana Ayling met with representatives of the Australian and New Zealand Head and Neck Cancer Society in Wellington. The meeting was productive and we have agreed to work on a number of projects together. 

In the photo from left to right, Ross Martin, Heather Anderson, Diana Ayling, Kevin McDonnell and Dr Swee Tan.

 

 

 

 

 

Patient Voice Aotearoa

Patient Voice Aotearoa (PVA) is a national collective of disease and illness advocacy organisations, as well as individuals throughout New Zealand. The primary function of PVA is to advocate for the rights of New Zealand patients. Already the response has been overwhelming and we are nearing 2000 members since we began establishing branches on Thursday afternoon this week.  There are some great ideas being floated between members, as well as some positive and constructive dialogue.  

Patient Voice Aotearoa will present a new round of petitions to Parliament in the near future. There are two drugs currently approved by MedSafe but not currently funded by Pharmac, which may be of benefit to people affected by head and neck cancer.

If you are interested in supporting this campaign, please contact us for more information. headandnecknetwork@gmail.com

Northland: https://www.facebook.com/groups/683895282050014/

Auckland: https://www.facebook.com/groups/438364430053731/

Waikato:  https://www.facebook.com/groups/435565943901449/

Bay of Plenty: https://www.facebook.com/groups/298886947658801/

East Coast: https://www.facebook.com/groups/299994910889938/

Taranaki: https://www.facebook.com/groups/627022347799464/

Hawke’s Bay: https://www.facebook.com/groups/609185609567883/

Palmerston North: https://www.facebook.com/groups/2336987913250472/

Wairarapa: https://www.facebook.com/groups/838784426505680/

Wellington: https://www.facebook.com/groups/363318734311738/

Tasman/Marlborough: https://www.facebook.com/groups/295952887949976/

West Coast: https://www.facebook.com/groups/918405465218335/

Canterbury: https://www.facebook.com/groups/318850652363899/

Otago: https://www.facebook.com/groups/617517028658349/

Southland:  https://www.facebook.com/groups/291732068437685/

 

Regional Connections

We are pleased to be working with the Auckland Health Foundation to refurbish the whanau room in Ward 74 of Auckland City Hospital. The hospital is a hub for patients from the greater Auckland and Northland area. We want carers, family/whanau and friends to feel comfortable while supporting those affected by head and neck cancer. If you can donate please do...make sure you follow the link to Ward 74. https://aucklandhealthfoundation.org.nz/get-involved/help-us-refurbish-ward-74s-whanau-room/?fbclid=IwAR1sgWzra9JH6zQMcEInktOecT8xp3K3Q2y7GN-RYtlcltlOnQbu746Wq44

 

 

 

Cancer Society - Wellington, Nelson, Wairarapa, Kāpiti, and Wellington

Many thanks to Margaret Alve, and her team for their hospitality on our recent visit to the Wellington base of the Cancer Society. There is a Head and Neck Support Group for folks in the area. They meet on the first Sunday of the month 2:30pm Ground Up Cafe, Pauahatanui. Contact Cheryl at pandcwotton@xtra.co.nz for more details. 

 

 

 

 

International Connections

The Latest Head and Neck Cancer News from Around the World 

Weekly Wednesday 22 May 2019

This week we have news from New Zealand research into head and neck cancer, a brave survivor speaks about the signs and symptoms of head and neck cancer, and we introduce you to a life saving technology - the Gamma Knife. Enjoy... 

World Head and Neck Cancer Day

For World Head and Neck Cancer Day 2019 we are joining with Australia’s Beyond Five to raise funds for the New zealand’s Head and Neck Cancer Support Network through Soup for the Soul. If you would like to host an event please register here and we will send you the support pack. https://forms.gle/TDNuYQkHwiJx84xL7

Online Support (Apps, websites, resources)

 

Canopy TV – an online news channel for the cancer community.

Canopy TV is a New Zealand based organisation that  aims to provide interesting and topical information to cancer patients and their families, increase people’s understanding of cancer and showcase interesting clinical developments in cancer treatment. https://www.canopycancercare.co.nz/canopytv

 

 

Save The Date!

10 June 2019 Auckland Support Group meeting. Domain Lodge, Grafton at 11am. Speaker Jacqui Allen - Voice and Swallowing expert.

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

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.

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

 

 

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