NEWS

Response to Community Concerns

 

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, our book chapter was published. From basic participation to transformation: Immersive virtual professional development Hazel, and the late Dr Edward Flagg, a co author, were wonderful colleagues, and true friends.

In 2014, I was diagnosed with cancer. Hazel and Ed provided loads of support and encouragement during that time. In 2017, Hazel was diagnosed with cancer. Roles were reversed. I provided her with support on her cancer journey.

Last year, Hazel was given the news that Western medicine could offer her no further treatment. In response, Hazel did what any good researcher would do. She got online. In her search for hope, she found a Swiss clinic offering treatments. Hazel flew to Switzerland, and took up the therapies offered. She had a wonderful time and returned to us glowing and full of energy.

The Swiss therapies could be described as both complimentary, and alternative. No one believed they offered cure. They could buy time.  For Hazel that is time to be with loved ones, in a place she loves, with the animals, and the things she loves. When Western medicine offered nothing, she found hope. To this day she defies the experts, and enjoys everything the day has to offer. I am in awe of her spirit and courage.

I share this personal story in response to a number of issues concerning the Head and Neck Cancer Support Network.  Recently, I received an email and I want to address each statement individually.

 

  1. “you lost it's beating heart when you disowned the value of the FB group”.  (Facebook Group -Head and Neck Cancer Support Aotearoa).

 

Since the inception of the Head and Neck Cancer Support Aotearoa closed Facebook group, I was, and remain fully supportive of the group. The group provides valuable emotional support to those affected by head and neck cancer. In July 2018 I was excluded from the Facebook group together with Head and Neck Cancer Support Network members, Heather Anderson and Sean Woods. From that point on, I cannot comment on the activities of the group. I wish them well in their work supporting people with head and neck cancer.

  1. “..you lost some of the keenest and most experienced HNC survivors when you aligned yourself with those who wanted alternative treatment.”

I fully support the members head and neck cancer community being free to discuss a range of treatments and therapies. That does not mean that I or the Network endorse them. Simply that as my friend Hazel did, people seek hope. If something different to Western medicine buys time, then that is an individual decision. I hope the head and neck cancer community has the wisdom and strength to support those who make those decisions.

I am hopeful that in an open and respectful forum, people affected by head and neck cancer can support each other to be informed and engaged in their treatment. This is living the values of the Head and Neck Cancer Support Network. To be, caring, respectful, engaged and informed.

I am including this explanation from the Mayo Clinic in regard to their online discussion forum - Connect..

  • Not every statement made by members on Connect (Discussion Forum) is accurate or evidence based. But by giving people space to express what they understand or perceive to be true, misunderstandings can be corrected.
  • In this open environment, members, mentors, moderators and — in some cases — providers have the opportunity to call out popular myths. And they can also point people toward reliable health information.
  • Rather than removing misguided information, this approach gives community members the chance to correct misconceptions and provide balanced, respectful debate. It can be a productive learning and bonding opportunity.

4) “...you have never acknowledged why the committee left or tried to make amends in an honest way.”

The Network board are respectful of the personal decisions of those committee members who resigned from the committee. I have stated over and over, the door is open to anyone who wishes to re-engage. We have made numerous suggestions for ways in which those involved in the Facebook group can collaborate constructively with the Network. All members are welcome at Network meetings.

5) “...you have alienated many in Auckland with your negative attitude to the DHBs.”

From May 2017, the Network was involved in the Review of the Head and Neck Service of the Northern Regional Alliance. This includes Northland, Auckland, Waitemata, and Counties Manukau District Health Boards.

The 2017 Head and Neck Cancer Service Review Final Report states, (p.6),

The review of current state service provision highlighted some key areas that need to be addressed:

  • Lack of consistency in service provision by the lead provider plus population growth and a desire to provide care close to home, has led to the uncoordinated development of HNC services in other DHBs, sometimes without ensuring a multidisciplinary approach or investing in the appropriate infrastructure for complex cases. It reflects a lack of leadership across the region and of an administrative structure that can be held accountable for service delivery ensuring that all patients have access to the same standard of care irrespective of where they live.
  • From a patient experience perspective, the aftercare is as important as the primary treatment in achieving a good outcome. From the extensive feedback from staff and patients it is apparent that there are significant gaps and shortcomings in the current service provision.

I am disappointed and saddened by the Head and Neck Service performance. People affected by head and neck cancer have high needs in terms of treatment, care, and support. Many of our community were negatively impacted by the shortcomings in the Service.

The Network worked hard to present the patient perspective in the Review process. I am a member of the Implementation Oversight Group. I am pleased to report a number of changes were made to the Service. There is a positive trend. More work and resource is needed. The Network will be supporting the continued efforts of the Service.

Moving Forward

I want to see a well performing head and neck cancer team, who own their team performance, monitor it regularly, and adjust their processes to address areas of concern. If this can be achieved, and I believe it can, this will be of real benefit to the head and neck community in the Auckland/Northland region.

This year the Network has two projects. One Voice, and Building our Community. We know that in the near future the head and neck community will face some significant issues. One of these issues is likely to be patients requesting access to unfunded life saving medicines.

To advocate for access and funding we will need to be connected, and united. This is our challenge as a community. It is important, and it takes courage. We can be bogged down in the past or we can face the future together with strength and determination. We invite you all to join us as we move forward. Everyone is welcome. Everyone is invited to make a contribution. Please contact us and let’s discuss what you can do to help. headandnecknetwork@gmail.com

Nga mihi,

Diana Ayling



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

 

 

Upcoming Events

Cancer Dictionary