NEWS

Network News - 18 March 2019

 

Kia ora tatou,

Our deepest, heartfelt, condolences to the family and friends of the victims in the Christchurch Mosque shootings. Arohanui.

It's hard to find the words that will acknowledge what happened and how it has made many of us feel. I strongly suggest that if the recent events have left you feeling overwhelmed you seek support from the Cancer Society,  or your General Practitioner.

This week our Network News include a summary of the Palmerston North Support Group meeting held in January. If you have attended a support group meeting and would like to share, please email us and we will be sure to include in the NN. Remember, we all learn through sharing of ideas and information.
We have new support resources for you, and encourage you to participate in our survey to gauge your thoughts and feeling around the New Zealand Health and Disability System. Use our survey to have your say. We will be submitting a final report on behalf of all members in early May.

Recently, there was some confusion over the various support services available to people affected by head and neck cancer in New Zealand.

The Head and Neck Cancer Support Network is an incorporated society. No. 2643011. The Network is a New Zealand wide group set up to connect, support and advocate for people affected by head and neck cancer. The Network is holding the AGM on 6 May, and you will be notified of the details, and given the opportunity to participate over the coming months.

There are other New Zealand support groups run by District Health Boards, and the Cancer Society. These are informal and have the purpose of providing social and educational support.

There are two New Zealand based Facebook groups which provide online support. Both groups are closed to the general public. If you know of more groups, please let us know and we will add to our website.

Head and Neck Cancer Support Aotearoa

The Explorers - Head and Neck Cancer Support

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

Network News

Palmerston North Support Group January Meeting

From Head and Neck Nurse Maura Foley

We held the first meeting of the year in our usual space at the Cancer Society,  Ruahine Street. We welcomed two new members and their partners. In total there was about twelve us present.

This meeting had no fixed agenda item. It was a general catch up on how everyone had coped with the Christmas and new year break.  We talked about planning for the new ahead.

In particular there was a lot of chat.  We supported our new members who have had laryngectomies late last year. It was great to see the advice, support and sharing of knowledge. I followed up with phone calls later. The new patients  fed back that just seeing how others are coping with laryngectomies and the fact it does not need to hold you back in getting out and about, going overseas or traveling locally really helped with the mental processing.

Suggestion for future topics:

The role of the Head and Neck Nurse, and who is she!

Medications, and their potential side effects – we have secured the chief pharmacist to do this

talk, and she did her thesis on head and neck cancer and medications, so should be a great talk.

Cutting edge technology and what’s projected regarding new treatment s in the near future.

Palliative services – maybe Raewyn from the Hospice

Social worker, quick review of their services, and any benefits that may be applicable.

Dietician – we have struggled to get a speaker for this.

A great deal of chat and laughter was had, and a suggestion to go for a cup of tea or coffee outside of the group for those that wanted too. Next meeting planned for 18 February 2019


Auckland/Northland Review of Head and Neck Cancer Services

There is steady progress with set of recommendations from a group looking at improving the Multi Disciplinary Meeting for patients, friends, and family/whanau. These recommendations will be shared with teams in other hospitals outside of Auckland.

Auckland Support Group Meeting 2019

Our next meeting is held in the evening. We will meet at 6pm on 18 March 2019, at Domain Lodge. See the website for details. We are hoping to welcome many new attendees, those who work or have not attended a support group meeting before. Be rest assured the meeting with be low key with the emphasis on getting to know each other.

AGM for Head and Neck Cancer Support Network

Our AGM will be held on 6 May 2019 at 6pm. It will be online, so anyone can participate. You will be able to register and vote prior to the event. If you are interested in taking on a role in our Incorporate Society, please contact us for more information. Email: headandnecknetwork@gmail.com  More details to follow.

Let's Chat!

Every Monday morning at 11 am. (You must be logged in to participate!)

In response to our mission to connect and support people affected by head and neck cancer we are providing online chat for Network members.  This creates real-time, fun and easy communication possibilities. If you are logged in to the our website http://headandneck.org.nz  You can chat to other members in other parts of New Zealand, who share the same cancer experience as yourself. We are hopeful that this Chat feature will encourage more peer to peer support. We will run online chat for one hour every week from Monday, 11 am to 12pm. If you have a burning question, then get online and ask it. This week Diana Ayling is taking the questions, so please join in and introduce yourself.

You can find out more here.....

New Support Resources for You

Talks to remind you that your story isn’t over

Feel like you can’t recover from a major setback? Let these talks remind you that this is not the end — there is much more left to your story. Click here for more...

Useful Patient Technologies

We bring you new development in technologies which support treatment, care and support. This week...

Tele Health….

Mobile Health or mHealth uses mobile communication technologies, including the delivery of health information, health services and healthy lifestyle support programmes. Mobile communication devices include mobile phones (usually smartphones), tablet computers, mobile sensors and other devices that use cellular networks (3G or 4G), Wi-Fi or Bluetooth. Functionality includes text messaging (SMS), smartphone/tablet apps, mobile web browsing, video calling, MMS/pxt, and allowing the mobile use of technologies such as QR code scanning and GPS locating.

 

EXAMPLES OF NEW ZEALAND MHEALTH PROGRAMMES INCLUDE:

  • STOMP: a text messaging smoking cessation support programme that was implemented as txt2quit by The Quit Group
  • FoodSwitch: a smartphone app to provide point-of-sale nutritional advice on foods and suggest healthier alternatives
  • Listen Please: a clinical translation smartphone app for patients to communicate with clinicians in emergency/intensive care situation.

 

You can read about the ideas of Dr Lance O’Sullivan and bringing tele-medicine to the Far North. Lance O'Sullivan sets up NZ's first virtual medical centre in town with no doctor

 

Head and Neck Cancer National News

Health and Disability  Survey

The Government is currently asking for feedback on the New Zealand health and disability system. The deadline to submit feedback is 31 May 2019.

This first round of consultation is seeking feedback on how the health and disability system is working currently and to identify critical issues to improve the effectiveness and equity of the system.

You can give feedback by completing an online survey in English, Te Reo Māori or Plain English.

Background about the review

In May 2018, Health Minister Dr David Clark announced the review of the New Zealand health and disability sector. He said the review would "... look at the way we structure, resource and deliver health services – not just for the next few years but for decades to come."

The Terms of Reference for the review state that the purpose of the review is to "... identify opportunities to improve the performance, structure, and sustainability of the system with a goal of achieving equity of outcomes, and contributing to wellness for all, particularly Māori and Pacific peoples." The review has a broad focus on achieving "wellness, access, equity, and sustainability" in the health and disability system.

The review will consider a number of points, including:

"Contribution of and the interaction between health and other social sector agencies in supporting health and wellness."

David Clark said the Terms of Reference for the review are "deliberately wide" and "allow for a more thorough assessment of the disability sector."

The Review will be chaired by Heather Simpson. The other review panel members are Shelly Campbell, Professor Peter Crampton, Dr Lloyd McCann, Dr Margaret Southwick, Dr Winfield Bennett and Sir Brian Roche.

The panel is expected to release an interim report in August 2019, following the consultation. A second round of consultation will be invited on the interim report. A final report is expected to be provided to the Government in March 2020.

For questions email systemreview@moh.govt.nz.

Thank you to those who have shared their thoughts on improving care for people affected by cancer. If you have not yet had your say you can do so here. https://www.surveymonkey.com/r/GZZY9F8


World Head and Neck Cancer Day 2019

We are starting to plan for this very exciting day. This year the day falls on a Saturday which opens the door to greater connection and collaboration. We will be supporting all kinds of organisations to recognise the day. If you are interested in holding and event or helping out with an event be sure to let us know. Email: headandnecknetwork@gmail.com

If you are interested in making and selling ribbons on the day. Let us know. We have ribbon, pins, and thread. You can make them while watching Netflix!  If you can sell them for $1 each, that money will go towards supporting patients through the Network.

Save The Date!



 

 

 

 

 

 

 

 

 

 

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

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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