NEWS

Network News - Monday 18 February 2019

Kia ora tatou,

this week our Network News includes an opportunity for you to share your views for the government's Health and Disability Sector Review. Click here to give your thoughts. We give you the details of the approved plan for the development of the Auckland/Northland Head and Neck Service. We share news from the Auckland Support Group, and introduce our new developments to support Patients. We are giving you the opportunity to ask questions about the Network or anything else that is on your mind. Every Monday Morning we are offering online chat. You can read more about how to get online and ask questions below. We share news from the recent Cancer Care at the Crossroads conference, held in Wellington, and there is a link to a very interesting video from a 22 year laryngectomy patient as part of Cancer Book Club. Enjoy!

Network News

Patient Power Expert Visits

Patient Power is an extraordinary website for people affected by cancer. https://www.patientpower.info/ Over the summer Andrew and Esther Schorr is visited New Zealand. Some HNC patients, and supporters met with Andrew and Esther for some good conversation, and plenty of humour. Featured are Dr David Grayson, Barry Ayling, Diana Ayling, Maureen Jansen, Andrew Schorr, Esther Schorr and Toni Davis.

Andrew Schorr of Carlsbad, California near San Diego is a medical journalist who, working in partnership with his wife, Esther, has devoted his life to educating and empowering families affected by serious illnesses since 1984. First as the producer of brief educational videos and, more recently hosting worldwide broadcasts on the Internet, Andrew and his team have touched the lives of several million patients. They have won numerous national awards for the quality and impact of their work. Andrew is the author of The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis, published in the spring of 2011. In the book, Andrew shares the real-life success stories of powerful patients to help individuals feel confident using the Internet to find reliable medical information, connect with others, and use what they learn in effective conversations with their doctor. You can view Andrew and Esther’s website here. https://www.patientpower.info/

Auckland/Northland Review of Head and Neck Cancer Services

The Review is complete and a blueprint is in place.

This plan will determine how the service will progress. There are five key principles that will determine the future of the service.

  1. There will be a high-quality service for patients regardless of their geographic location (noting the unique requirements of the more geographically distant Northland District Health Board);
  2. There will be a network of hospitals in the region providing head and neck services.  A single provider, Auckland City Hospital, will provide the most comprehensive service. Moving low volume/major complex procedures on a single site is needed to ensure best outcomes and patient safety;
  3. Hospitals will be accredited to provide a level of service commensurate with their resources. This will mean that not all hospitals can provide all services. Patients may need to travel to access the best services for their treatment.
  4. All clinical staff will be supported to maintain their skills. All surgeons in the service will have the opportunity to maintain and develop their skills.
  5. There will be greater integration of services to ensure all patients have equitable access to the same level of expertise.

The Head & Neck Cancer Framework document was approved by the Regional Executive Forum and the Northern Region Integrated Cancer Service Programme Board in December. Implementation will primarily be led by the operational units in each of the 4 DHBs, supported by Northern Regional Alliance (NRA).

You can Access the full document here.

 Auckland Support Group February Meeting 2019

The Auckland Support Group met with Dr Richard Sullivan. Richard is currently the Director of the Northern Cancer Network, Deputy CMO at Auckland City Hospital, the Director of Cancer and Blood at Auckland City Hospital, the Director of Cancer Outcomes at Auckland City Hospital and a Director at Canopy Cancer Care. Richard spoke of his work and aspirations for cancer care in the future. Thank you Richard. A gift of thank is on its way to you.

Our March meeting is an evening meeting. We welcome all of you who work or have day time commitments to join us at 6pm at Domain Lodge, Grafton, Auckland on 18 March, 2019. The aim of the meeting is to get to know each other, and determine what the group would like to achieve in the future. All welcome.

You can view our schedule here.

 

 

 

Whanau Room Upgrade

Yes, its true. The whanau room in ward 74 at Auckland City Hospital is going to be upgraded. We would like you help and support to raise funds for this project. We are working with the Auckland Health Foundation. If you are interested in working on the project, or want to donate, please contact us headandnecknetwork@gmail.com To find out more download the full brochure. Whanau Rooms Brochure.pdf

 

Let's Chat! First one Today! Monday 18 February 11 am.

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. 

If you have forgotton your passwork our website has a full retrieval system.

The Chat feature allows you to participate in a live chatroom and private chats. The Chat provides you with additional options:

  • Customizable notifications
  • Message counter
  • Ability to create and manage your groups
  • Ability to send files

You can find out more here.....

 

 

New Support Resources for You

Useful Patient Apps

In this technological world of online information and communication there are some great apps to support patients. We will try to feature one each week.

Gather my Crew

If you are newly diagnosed or returning to treatment and you have 101 things to do, this is the app for you. It helps you gather a support crew and they can help you do the things you need to do. This includes help around the home, food, transport, help ith children, pets, and social time.

You can find our more here. http://headandneck.org.nz/apps-to-help-get-you-through/gather-my-crew

 

 

 

Head and Neck Cancer National News

Cancer Care at the Crossroad Conference

Committee members Heather Anderson, and Brian Sheppard, attended the conference. They had an amazing time, and both have returned home full of enthusiasm for improving cancer outcomes in New Zealand. You can read Brian’s thoughts here.  We look forward to more resources becoming available in the coming months. We will be sure to share with you. You can read our curation of media here. http://headandneck.org.nz/news/cancer-at-the-crossroads-conference-2019

Health and Disability Review

The government has assigned Heather Simpson to undertake a review of the health and disability service. The review is in stage one. We are preparing a submission to clarify the major concerns of people affected by head and neck cancer. We invite you, patients, carers, families, allied health and clinicians to take part in a quick survey. The material collected with be included in a report submitted to the review team. Please take our survey here.

https://systemreview.health.govt.nz/

International News

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

22 year Survivor of Head and Neck Cancer

Last year Cancer Bookclub interviewed Shrenik Shah. Shrenik is a long term laryngeal cancer survivor. This is a long but very interesting interview. (38 mins) https://youtu.be/b6uuoNhjPdM

From Australia

This piece from Miko, an Australian aspiring surgeon, has touched the hearts of many. You will find this a fascinating insight into the culture of surgery.

https://mindbodymiko.com/the-ugly-side-of-becoming-a-surgeon

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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