NEWS

Network News 5 August 2019

Kia ora tatou,

Network News

World Head and Neck Cancer Day 2019

We had good media coverage for the day. I would like to thank the Australia New Zealand Head and Neck Cancer Society, the New Zealand Dental Association, the Gillies MacIndoe Research Institute, the Sexually Transmitted Diseases Education Foundation, the Cancer Society, www.hpv.org.nz and the wonderful team at Wellington Zoo. A great effort. You can read all the information shared here. http://headandneck.org.nz/news/weekly-wednesday-31-july-2019-whncd-roundup

Annual Fundraising

Thank you to all those who raised funds by holding Soup for the Soul events. We have had some great fun sharing a simple bowl of soup with friends and colleagues. You are welcome to hold and event or make a donation to through our Give a Little page or directly to our Kiwibank account. Some of you have chosen to make a donation instead of holding an event. Thank you. All donations are gratefully received. 

https://givealittle.co.nz/donate/cause/share-some-soup-for-the-soul

Kiwibank 

38-9017-0819902-00 HEAD AND NECK CANCER SUPP…

 

Annual Members Survey 

3179346521?profile=RESIZE_710xIt's your very last chance to take our survey and share your thoughts on your situation a experiences to date. We have had 8 people share their experiences. We would like a better representation of our 200+ Network members. Remember the information you supply is anonymous. We take care of the data, and release it only as appropriate. Please take our Annual Survey. https://www.surveymonkey.com/r/hncnz2019

Membership News

We welcome new members Ieti TiatiaLeonie BradshawDesmond BerghanSaul MeredithNgaakete Andrews, and Trish.

We are really pleased to have you on board. Be sure to get involved with our Facebook group or discussion forum. More details below.

 

Please update your Network Profile

We are asking you to revise your profile on our Network. We will be emailing you to do this. We are seeking indications as to whether you wish to register as a member of the Head and Neck Cancer Support Network. If so, we need your address and phone number to include you in the register. 

As a member we give you:

The opportunity to have your voice heard at a national and local level in decision making related to head and neck cancer treatment, care and support.  Representation with the Auckland District Health Board, and the Northern Regional Alliance on the Northern Cancer Network Head and Neck Cancer Service Review Implementation Oversight Group, the Australia and New Zealand Head and Neck Cancer Society, the Gillies MacIndoe Research Institute, the New Zealand Cancer Society, Volunteering New Zealand, the Ministry of Health, Patient Voice Aotearoa, The New Zealand Dental Association, the Sexually Transmitted Diseases Education Foundation, www.hpv.org.nz,and a variety of international organisations.  Support through our website, and resources. Social connection through a closed Facebook group, and our Network Discussion Forum.  Support groups, events and activities throughout New Zealand. 


National News

You may be aware of the recent dicussion and debate around a dedicated Cancer Agency. The idea is that such an agency would be fairer for people affected by cancer, and less vulnerable to political change. We are keen to hear your views. To start off the discussion I am linking you to the thoughts of one our our member Chris Flaherty. Chris writes a blog about his treatment pathway. In this post he talks about the value of the central cancer agency. https://chrisflaherty03.blogspot.com/2019/06/ If you would like to share your thoughts with Network members you can do so here. http://headandneck.org.nz/welcome-forum/a-central-cancer-agency-yes-or-no

You can follow this story in the media, as it relates to the Blair Vining Petion. https://www.parliament.nz/en/pb/petitions/document/PET_87829/petition-of-blair-vining-better-cancer-care-for-all-new

 

Regional Connections

The Auckland/Northland Regional Service 

3179320365?profile=RESIZE_710xThe Auckland regional HNC service is continuing great work in improving their performance to meet the needs of patients. There are four positive outcomes this month:

An accreditation process is approved and will be implemented. This accreditation process requires each hospital in the region to assess its readiness to offer HNC services. There is a range of classifications with only the highest level facility able to offer complex HNC surgery and treatment. The funding for consumables -that's all the things patients need - has been approved and will ensure that everyone in the region has the same access to equipment they need for living well. The new treatment room at Auckland City Hospital is up and running. Early feedback suggests patients find value in this new privacy. If you have any views on this feel free to login and share them in our forum. http://headandneck.org.nz/welcome-forum
The Ministry of Health is working with the Auckland regional service to develop quality performance indicators (QPIs) and Patient Reported Outcome Measures (Proms). This work will commence next month and run for three months. 

 

 

2479985177?profile=RESIZE_710xPatient Voice Aotearoa is continuing to work hard for better access to medicines, a central cancer agency, and better outcomes for people affected by cancer. You can get involved by joining Facebook groups in your region and by becoming part of the Nationwide Network. https://www.facebook.com/groups/438364430053731

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/

 International Connections

If you want to find out all that happened around the world on World Head and Neck Cancer Day then turn to Twitter. Use the hashtag #whncd2019 for all the tweets. And look who has the final tweet. 3399922526?profile=RESIZE_710x
 

Online Support (Apps, websites, resources)

Live Better With

3179329326?profile=RESIZE_710x

Live Better With Cancer is here to make everyday living a little bit better for the millions of people living with cancer all over the world. You will find a treasure trove of resources and support. Highly recommended. https://cancer.livebetterwith.com

 



Looking for answers or support?

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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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