NEWS

Network News - Monday 8 April 2019

Kia ora tatou,

Stand with our brothers and sisters affected by lung cancer. More New Zealand die of lung cancer than any other cancer. Sufferers are often stigmatised by smoking, when most have never smoked. The Lung Cancer Foundation are looking for support for their petition to have lung cancer declared a health priorty and to approve additional budget for Pharmac to fund lung cancer medications, including Keytruda, Alectinib, Osimertinib and Crizotinib, for all Kiwis with advanced lung cancer, irrespective of socio-economic status.

https://www.parliament.nz/en/pb/petitions/document/PET_86322/petition-of-philip-hope-for-lung-foundation-new-zealand?fbclid=IwAR0Er6gNod70xvpB1kq3bBVa0LExrfq8GSWo7Gv3KvV-Jr9vwb8mL-NsrDs

Notice of Annual General Meeting

Our AGM is to be held Monday 6 May at 6pm at Domain Lodge, Grafton, Auckland. Please check the details on our website.

You and your whanau are invited to attend.

If you wish to stand for the roles listed below, please send a letter of nomination to headandnecknetwork@gmail.com by 5pm 20 April, 2019. You will need to have a seconder for your nomination.

  • Chair
  • Secretary
  • Treasurer
  • Committee Member

Prior to the AGM (22 April) you will receive:

We encourage you and your family to register as members of the Network.

Auckland/Northland Review of Head and Neck Cancer Services

There are a number of projects underway to improve services for people affected by head and neck cancer.

  1. A new framework establishing levels of hospital preparedness for treating head and neck cancer is complete. Complex surgery should only take place in hospitals that have the facilities and the staffing to support patient safety and quality care.
  2. All public regional hospitals will be accredited to this framework. Not all hospitals will be able to do everything, and patients will need to travel to Auckland for certain treatments.

  3. The process for developing the integrated HNC Multidisciplinary Pathway in 3 distinct phases (GP referral to MDM, MDM to discharge and Discharge into survivorship) was outlined and supported.

  4. An updated Regional Recruitment Process was endorsed. Recruitment for all senior medical officer  positions working in the Regional HNC Service will need the approval of the Implementation Oversight Group.

  5. A new Advanced Allied Health Practitioner position description was approved.

  6. The Pathway Co-design Group is advancing work to improve the MDM experience for patients; the MDM booklet for patients is currently being refreshed. The group is looking to recruit more consumers (at least one of whom identifies as Maori), to change the name to the “Patient Co-Design Group” to become more encompassing and to meet quarterly in 2019.

  7. A report on indicative additional expenditure in the 2019/20 financial year requires more work. A subgroup has been established to review and prioritise expenditure items, noting that the report is indicative only i.e. a Business Case is required before there is any actual expenditure. It was agreed at the meeting that Oral Health is a priority and ADHB advised that a Project Manager to support the Oral Health work-stream is about to be appointed.

Auckland Support Group Meeting 2019

Our next meeting is held in the evening. We will meet at 6pm on 6 May 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.

April Meeting

We had a small but vibrant turn out for our April meeting. Hannah Davies from the Auckland Health Foundation talked to us about the redecorating of the whanau room in ward 74. There were plenty of ideas, and experiences shared. Sarah Devine, of the Auckland DHB talked to us about patient feedback surveys. There are surveys for Inpatient Experiences (when you stay in hospital) and Outpatient (when you visit for a clinic appointment). We learnt that many patients report the same issues around adequate information and communication. Finally, we had Caryn Tasker and Tracey Hale from the Northern Regional Alliance speak to us about the changes to the Multi Disciplinary Meeting handbook. There was good discusion.

Thank you, to everyone who attended and we look forward to our next meeting 6 May 2019.

New Support Resources for You

We are aware of the great work of caregivers in supporting people affected by head and neck cancer. This week we have a resource for caregivers of newly diagnosed patients. Advice for Caregivers (Early days)

Useful Patient Technologies

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

At our Auckland Support Group meeting patients were keen to receive a survivorship plan after treatment. There is an excellent resource here https://oncolife.oncolink.org/ Click the icon

You will receive a plan that includes:

  • Coordinating Your Care
  • Follow Up Care For Head & Neck Cancers: Tongue, Lip, Oropharynx, Nasopharynx
  • Surgery Side Effects
  • Risks Related to Medications
  • Radiotherapy Side Effects
  • Healthy Living After Cancer
  • Life after Cancer

It is well worth the time and effort to do this.

Head and Neck Cancer National News

Immuno-oncology treatment
KEYTRUDA is an immuno-oncology treatment for advanced and re-ocurring head and neck cancer. It may be used when platinum and cetuximab-based* therapies do not work, or are no longer working. You can find our more here.

New Zealand Health and Disability Review

We are intending to make a submission on the current state of the New Zealand health and disability system. We will collate all your responses and present them to the Review. Submissions from organisations are powerful. We intend to advocate for the best treatment, care and support for people affected by head and neck cancer. If you wish to share your thoughts you can do so by accessing our survey here. https://www.surveymonkey.com/r/GZZY9F8

World Head and Neck Cancer Day 2019

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

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

 

 

Donations are always welcome

Donate via Givealittle

Or, you can put a little bit of money in our Kiwibank account!

38-9017-0819902-00

Upcoming Events

Cancer Dictionary