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Tracheostomy Webinar 11 August 2020

Kia ora,

Melbourne may be in locked down but the desire to help head and neckers remains strong. 

 

Tracheostomy Patients, families, carers and clinicians please plan to attend 

Tracheostomy Patient and Family Forum 2020

Hosted by Austin Health, Melbourne in partnership with 

The Global Tracheostomy Collaborative (GTC)

 A Symphony of Stories 

with Inspiring  Guest Speakers;

Benjamin Northey, Chief Conductor in Residence, 

Melbourne Symphony Orchestra 

and Chief Conductor, Christchurch Symphony O

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Volunteering Week 16-22 June

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National Volunteer Week 2019

#NVW2019 https://nationalvolunteerweek.nz/

National Volunteer Week celebrates the collective contribution of the 1.2 million volunteers who enrich Aotearoa New Zealand.

National Volunteer Week 2019 runs from June 16-22. This year’s theme is “Whiri Te tangata - weaving the people together". Volunteering, Mahi Aroha and social action weave people together.

This week the Network celebrates our volunteers, and acknowledge their work. We invite more people to join us to

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Response to Community Concerns

 

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Kia ora tatou,

This is me, and my friend Hazel. In 2011 we were on the Derwent river, Hobart, Australia. We were on our way to see MONA, the Museum of Old and New Art. We had just presented our paper at the ASCILITE conference, Thinking, researching and living in virtual professional development community of practice.

We were thrilled that our paper was well received.  We were further delighted, when a respected Italian academic invited to write a book chapter in her upcoming book.  In 2013,

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Friday was an easier start as we knew the format and layout ….. old hands we greeted each other like long lost family – we are united now. in this together …. Mostly health professionals but some big absences noted.
 
The first session was Rami Rahal from CPAC (Canadian Partnership Against Cancer, Canada). He spoke on improving outcomes through evidence-based policy and performance measurements. – OMG – fantastic work. He admits that currently we do better in involving our indigenous people
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Below are seven petitions that are being presented to Parliament next Tuesday (7 May) for 26 life extending or life improving drugs to be funded by PHARMAC, across six diseases (Lung Cancer, Breast Cancer, Ovarian Cancer, Chronic Lymphocytic Leukaemia, Multiple Myeloma and Pompe Disease).  Some of these drugs have been funded for many countries for many years.  Some of the petitions close within three days.  
 
Please take the time to sign each one (they only take twenty seconds e
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 Only one immunotherapy drug is approved and funded for people affected by head and neck cancer. Two drugs have been approved by MedSafe and are waiting for funding from Pharmac. The development of immunotherapy treatments will explode in the next ten years. We want people affected by all forms of cancer to have the best possible treatment, care and support. Read on...
 
  1. May 3 

    Hundreds march on Parliament demanding government ... - Stuff.co.nz

    https://www.stuff.co.nz/.../petitioners-march-on-p

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From our representative Heather Anderson.

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The Thursday afternoon sessions started with Prof David Currow (Cancer Institute NSW, Australia) talking about prioritisation experiences in cancer control in Australia – in particular hubs of excellence. See his presentation here.

Hon Steve Maharey, the new Chair of PHARMAC, talked on the processes of PHARMAC – my personal take was that he used his “newness” to avoid the hard questions.  There was an item of interest that he talked on which was a new d

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Health and Disability Survey

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

The Government is currently asking for feedback on the

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Cancer Care at a Crossroads 2019 (2)

 

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Professor Skegg

Heather Anderson continues her summary of attending the Cancer Care at the Crossroads conference. 

For me the Conference started on Wednesday afternoon. The pre-Conference lecture was from Dr Fatima Cardoso.  She is a world reknown oncologist with an interest in Advanced Breast Cancer (ABC) from Lisbon. She and others have been instrumental in setting up ESMO. This is a 10 step guidelines program to improve outcomes for those with ABC.  Dr Cardoso travels the world helping cou

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Heather Anderson, is one of the Network Committee members. Together with Brian Sheppard, she attended the recent Cancer Care at the Crossroads Conference, at Te Papa, Wellington. In this article, Heather shares her thoughts and impressions from the conference.

My mind has been spinning since attending the Cancer at a Crossroads Conference. The conference was at Te Papa in Wellington. So much information and so many phenomenal people. The Data is so specific I will not even try and report on tha

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Brian Sheppard call for action

948252448?profile=RESIZE_710xBrian Sheppard, is a member of the Head and Neck Cancer Support Network committee. He attended the recent Cancer at the Crossroads conference. Following the conference shares this message with you. If you would like to work with us to advocate for higher standards of cancer care, we would love to hear from you. Please email headandnecknetwork@gmail.com

_____________________________________________________________________________________

I would like to extend my sincere thanks to the organisers

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Boston — The 96-year-old patient with pneumonia in Bed 11 was angry. “Do you really need to check my vital signs every four hours?” he asked.

Checking things like temperature, blood pressure and respiratory rate every four hours on hospitalized patients has been the standard of care since the 1890s, yet scant data indicates that it helps. In fact, data shows that close to half of patients are unnecessarily awakened for such checks, perhaps to the detriment of their recovery. My patient wanted t

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Health Navigator Website

317324144?profile=RESIZE_710xHeath Navigator is a website for New Zealanders. It is crammed full of resources, and support on health related matters. https://www.healthnavigator.org.nz/

One of the resources is a link to an app for people who cannot speak but can read. It will do the talking for you. The app is available for both iOs and Android systems. There is a modest fee. 

https://www.healthnavigator.org.nz/app-library/s/speech-assistant-aac-app/

References - Care planning

Video from a patient perspective about the ben

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Your Chair - Diana Ayling

Over the next few months we are profiling our committee, so that you know them a little better.  

The first cab of the rank is our Chair, Diana Ayling.

 

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  1. What are you reading currently?
    The Open Organisation by Jim Whitehurst of the Red Hat organisation. It is all about working in an open and transparent business and the edge it gives business in innovation and performance. Love it!

  2. What’s the first concert you attended?
    Easy, Elton John, 28 February 1974 at Western Springs. He came out dress
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48549238?profile=RESIZE_710xThe United States accounts for five percent of the world's population but consumes almost 70 percent of the total global opioid supply, creating an epidemic that has resulted in tens of thousands of deaths each year. How did we get here, and what can we do about it? In this personal talk, Travis Rieder recounts the painful, often-hidden struggle of opioid withdrawal and reveals how doctors who are quick to prescribe (and overprescribe) opioids aren't equipped with the tools to eventually get

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Open Letter to Val Ireland

Readers, Val Ireland made an impassioned plea for help following a series of poor outcomes from head and neck cancer treatment/reconstruction in Auckland.

You can read Val’s story here. http://nzh.tw/11966945

I have decided to openly respond to Val to encourage open discussion about the current service, and the steps we, at the Network are taking now, and in the future to improve the performance of the service.

An Open Letter to Val Ireland

Dear Val,

Thank you, for courageously telling your sto

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Guest Editorial - Living with Disfigurement

There's no art to find the mind's construction in the face. - William Shakespeare

These plastic surgery quotes were retrieved from New Zealand clinician sites on 4 December 2017.

“...it’s your face which people notice first. Your face projects an image to people about who you are.”

“Plastic Surgery: Empowering You With The Confidence To Succeed In Both Your Career & Social Life.”

“Look and feel truly amazing.”

“... facial features undergo gradual changes that can result in a ti

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Kathryn is one of our regular contributors. Her husband Greg was treated for adenoid cystic carcinoma not long after the loss of their daughter to cancer. I asked her if she had wisdom to share on how to deal with the suffering that cancer causes us. Here are her words.

The top illustration is of their happy place, their farm just out of Whangarei, rolling country dotted with native bush. There's one of the Parnell Rose Gardens, one of Greg fixing his car with his youngest son and of the Auckla

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Where are you on your patient pathway?

HiRes.jpg?width=250The "Patient Pathway" describes the patient experience of treatment, care, and support. It is the route that a patient starts from their first contact with a health professional. It includes a GP referral and continues through treatment. It also covers the period from entry into a hospital or a treatment centre, until the patient leaves. It includes the period after treatment, including followup and surveillance.
 
It is also one of the main tools used to manage the quality in healthcare. A c
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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

 

 

Cancer Dictionary