Help design our new website

With any new community or network it is helpful to think about what you want to accomplish and how. We are inviting all members and interested parties to share your thoughts. We are going to open this process up to as many people as possible. If you would like to contribute you can do it in two ways.

1. You can download the PDF attached, complete the questions and either post it or scan and email it to us. The Network, 2/18 Rosario Crescent, Red Beach, 0932. https://db.tt/DpoOLSGI
2. You can complete the online survey here. http://tinyurl.com/gvqkk4u

What do to when things go wrong in treatment

Read more ....

Legal Side of Head and Neck Cancer

As our aim is to advocate for better outcomes and treatment for head and neck cancer people, understanding the legislative environment for the provision of services and funding is crucial. This is all legal, as it is the government policy through law, that determines the services head and neck patients receive.

The Key Pieces in the Jigsaw

The Health Act 1956

This is older than me! The Health Act is the foundation of the New Zealand health system. The Health Act delegates responsibility to the Ministry of Health. Its states S. 3A. “the Ministry shall have the function of improving, promoting, and protecting public health.” The Act creates Health Districts that are so familiar to us.

New Zealand Public Health and Disability Act 2000

The purpose of this Act is to provide the funding for health services. This includes public health services, and disability support services. Priorities are the principles of improvement, promotion and protection of health. The Act includes the ideas of promoting of inclusion and participation in society.  A key priority is the independence of people with disabilities.

The Act states as an aim, the best care or support for those in need of services. It includes provisions to reduce differences in health outcomes for Maori. It ensures there is public participation in personal, public and disability health services. There are responsibilities given to the Ministry of Health. The Ministry is to facilitate access to, and dissemination of, information to deliver, appropriate, effective, and timely health services.

The Act sets out the objectives of the District Health Boards. These are to reduce health outcome disparities between various population groups within New Zealand. The Boards are responsible for developing and implementing, services and programmes. These services and programmes are to raise New Zealanders health outcomes. The Boards have the responsibility to promote effective care or support for those in need of personal health services or disability support services.

DHB’s are required to collaborate with relevant organisations to plan and coordinate at local, regional, and national levels for the most effective and efficient delivery of health services. They do this so they can improve, promote, and protect the health of people. As a consumer organisation we have a legitimate role in working with the DHB's. Our role is to advocate for an improvement in services provided to head and neck cancer people.

Standards of Service Provision for Head and Neck Cancer in New Zealand

One of the programmes of the Ministry of Health is the development of standards of care for each type of cancer. In 2013, a working group of skilled and interested stakeholders developed the Standards of Service Provision for Head and Neck Cancer.  These Standards ensure timely cancer treatment.  They are part of the Ministry of Health’s Faster Cancer Treatment (FCT) programme. You can access all the Standards of Service Provision here. http://www.health.govt.nz/node/5073

All national standards follow an agreed pattern. The standards topics include prevention, early investigation and treatment of head and neck cancer. Each standard states a goal, and specifies processes to achieve it. The standard includes a rationale and a method of measuring progress. Each standard has good practice points.

How does this work in practice?

One of our issues is dental care and dental reconstruction. Standard Nine states patients have access to a care coordinator.  This includes access to a range of rehabilitation professionals throughout their cancer journey. General Practitioners are part of the coordinated care.

The rationale states that patients are a varied, heterogeneous group, with potentially complex and long term needs.

The best practice points guide clinicians to meet the standard. For Standard Nine, the best practice points state that on discharge from hospital, patients receive appropriate oral care. This includes advice on the need for regular, ongoing professional care. It includes future oral care, as well as  what you need to do if you have a prosthesis. It states patients will receive advice on their individual circumstances and needs. This includes dental extractions. Other health professionals, such as your GP and dentist should be informed of your oral and prosthesis care needs.

For best practice, patients should return to their own dentist for continuing care. If you cannot afford your own dental care, and the finance and facilities are available, you can receive oral care and maxillofacial rehabilitation. Yet, it appears that ideally you pay for this. It is not publicly funded.

A comparison with breast cancer

Breast cancer is one of the most prevalent cancers. The groups that represent breast cancer people are many. There are over 32 in New Zealand and they are vocal. They advocate for breast cancer people to have the best quality treatment and rehabilitation. There are National Standards of Service for Breast Cancer.

Here is the Standard for breast reconstruction.

Standard 8.6 Clinicians discuss delayed and immediate breast reconstruction with all women who undergo mastectomy, and offer it except where significant comorbidity precludes it. All appropriate reconstruction options are offered and discussed with women, irrespective of whether they are available locally.

The rationale for this standard is lengthy and I will not recount all  here. The first paragraph sets the tone. “Breast reconstruction is an important means of enhancing body image and self confidence after mastectomy ...”

The good practice points are extensive, and include a process for women to seek further assistance if they are unhappy with their reconstruction. All of this is publicly funded.

Head and neck cancer folk talk about their dissatisfaction with their own situation. Many are dissatisfied with the quality ongoing care. Some are concerned about their access to rehabilitation. My response is to affirm to you the need to support your own organisation. It is through the Network we can ​provide you with the voice to be heard. Together we can advocate for better outcomes for head and neck people.

You can support us with your time, donations, participation in  projects, and by connecting with others.  As you can see we have much work to do. Diana

Find us on Givealittle

We have started to fundraise! Givealittle is up and running and already attracting a trickle of donations. You can find it at the link below:

https://givealittle.co.nz/org/headandnecknetwork

Our fundraising supports our publications, posters, flyers and website subscription.

The history of our support group to 2014

I met with Susan Comber, former social worker. She retired from ADHB in 2014. Susan was one of those who created the Friends and Family (FAF) Support Group about 20 years ago. This group later became the Oral Cancer Support Group, and then the Head and Neck Support Group. Susan worked closely with Jeanette Gillibrand, and Val McIntyre.

The team took a holistic view of providing support for HNC patients. They responded by adopting a "whole person approach", taking into account the psychological, and social needs
of the patient.  The idea of the group was to provide a forum for sharing. Susan stayed actively involved until she retired in 2014.

Susan saw a tremendous advancement in surgical treatment for HNC, and an increase in survivorship. She thought the Ward 74 team was outstanding, leading the way with ward meetings and a multi-disciplinary team.  As treatment advanced, so did the reconstructive capacity of plastic surgeons to restore patients.

Susan said that dental treatment and dental reconstruction costs have been a long term issue. The effects of RT/Chemo on teeth have a detrimental effect on social life, and an impact on appearance. She had been involved with Steven Cook in writing to the then Minister of Health, Pete Hodgson. There was no progress and the issue was dropped. The letter from the Minister stated the Ministry did not provide funding for individual care.

Susan is acutely aware of the pressures on patients. She talked about HNC as being the
“worst diagnosis of all, and the worst amputation”   Diana

Carlene Perris, Speech Language Therapist

Carlene Perris is one of the three speech language therapists working in ORL at Auckland Hospital. Esther and Jennifer are her two colleagues. Carlene outlined a research project she is currently involved in and a couple of opportunities for involvement in future projects.

Laryngectomy Study

Carlene pointed out that laryngectomees are a relatively small group with approximately 8 per year over the last decade here in Auckland. But they have unique needs.

What is the life experience of laryngectomees following treatment and how can their quality of life be improved? This is the topic for research being conducted by Carlene and a team from Auckland University.

The study has two parts:

• a retrospective audit of patient notes from 2005 - 2015 yielding 80 people. (This might not be an exhaustive list.).  This will look at information such as age at the time of surgery, length of stay in hospital post-op, number of readmissions, number of SLT appointments etc,
• semi-structured interviews with participants who have responded to an invitation. This will also involve completion of three questionnaires looking at different aspects of quality of life.  

The team consists of  Alana Brady, SLT Masters student, Dr Anna Miles from Auckland University, Carlene, Alan Spinks a patient advocate and Alex Smedley, a head and neck cancer SLT in Canterbury.

Dr Miles is the expert advisor for swallowing problems in New Zealand and is part of the faculty delivering the Master’s programme to train SLTs at Auckland University. While New Zealand has three speech language therapy learning centres, Auckland University’s course is slightly different. The Auckland SLT students are all completing a two year Masters programme after having graduated in another field, such as linguistics. Each student has to carry out a research project.

Dr Miles and her students are keen to be more involved with ORL, hence the collaboration taking place with this project.

It is not too late for laryngectomees treated in Auckland and Canterbury to get involved in this project.

Anna and Alana’s team want to explore the unmet needs of the laryngectomee population. Who are they? What are their experiences? How has the laryngectomy impacted on their communication, their eating and drinking? What can SLTs do better? What different equipment could be used? What information do they need and what further services could be offered?

Progress

• 80 Auckland electronic notes to audit
• 30 Canterbury notes to audit
• 10 Auckland participants for the interviews to date

The Auckland audit is nearly complete. The interview stage is about to commence. Alana has access to travel funds as well as Skype and the telephone.

In October, some preliminary data will be available for the ORL conference in Auckland. They are making a poster which they will bring to us later in the year.

Consistency across DHBs

The team wants to look at nationally funded products. Some DHBs fund certain devices and some do not. There should be a national standard of provision. Do they need to change their practice? Do they need to provide information in a different format? Can they use different stoma covers? How good is the access to follow up? Who should people contact if the valve is leaking? If they present to ED there should be a process in place to have them seen by the right person who understands the specific needs of someone who has had a laryngectomy. Carlene’s wish is for consistency across the DHBs.  Maureen

Consumer Engagement: a comment from Carlene

There are a couple of opportunities coming up to be more involved in the development of the SLT services.  At Auckland DHB we provide a regional, tertiary service which means that patients come to us for treatment from outside of the Auckland DHB catchment area and go back to their local DHB once treatment is complete.  We are currently working on getting together the SLTs across the region (Northland, Waitemata, Auckland, and Counties Manukau) to look at what services are offered to patients with head and neck cancer and address any gaps in those services.  We want to consider where is the best place for people to be seen and who are the best people to provide those services.  Members of the group can contribute indirectly by sharing with us their own positive or negative experiences of accessing SLT services in Auckland or in the greater region.  You are also welcome to be involved more directly by attending the meeting we are planning in September to discuss services as a group.

We are also planning a national study day on head and neck cancer for February next year.  I would love to have some volunteers from the support group who would be willing to talk at this study day.  It can simply sharing your story first hand or providing us some insight into observations you have made on how your care was delivered and how it could have been a better experience.  The audience would be SLTs from around the country who are already working with head and neck cancer and want to extend their skills or are new to the area and want some education in this topic.  So anyone who has had experience of communication or swallowing difficulties as a result of head and neck cancer would be suitable.  Carlene

From the Chair

27th July 2016 was the second World Head and Neck Cancer Day (WHNCD). The day was the brainchild of the  International Federation of Head and Neck Oncology Societies (IFHNOS). IFHNOS is a global organisation established through cooperation of national and regional Societies and Organisations in the specialty of Head and Neck Surgery and Oncology. (1)

Our Network seized the opportunity to become involved. Using our Social Media platforms, we were active on Twitter (HeadNeckNZ) using the hashtag #WHNCD, on Facebook, (Head & Neck Cancer Support) and through our own website. http://headandnecknetwork.blogspot.co.nz/

We had two articles in the mainstream media, Scoop and Stuff. As a result we made a number of new connections with head and neck cancer people in New Zealand. We connected with other HNC survivor organisations throughout the world. There was a generous sharing of resources and ideas. Over the coming years we will be maintaining and developing those new relationships.

Now we have 50 Twitter followers and 37 friends connected by our Facebook group, Head and Neck Cancer Support. In July we had a spike of interest in our blog. Most of that traffic was generated from Facebook.

For me, the most significant moment of the day was when we connected with Alistair Malcolm. He was in Waikato Hospital with a range of head and neck issues. He found us and our network due to the media articles. A few days later, another person in need of support connected with us from the South Island. Olwen Williams is supporting her partner Fred. After a distressing few days our Network offered care and support.

We have been busy printing posters, fliers and cards to get our message out there to people with HNC, their families and carers. We are truly living our aims to connect, support and advocate. I am extremely proud of all our efforts. I thank everyone who has contributed.

Next year, WHNCD will be even bigger and better!

1. IFHOS has membership from national and regional multidisciplinary organizations, representing 50 countries. The purpose of this organization is to provide a common platform for specialists in the field of Head and Neck Cancer to interact in professional matters of mutual interest. To know more about IFHNOS visit http://www.ifhnos.org/home

Diana Ayling

Connecting Conversation - New Zealand and World Head and Neck Cancer Day

We invite you to join the Conversation on World Head and Neck Cancer Day 27 July 2016. You can join our Facebook group https://www.facebook.com/groups/1116515895074395/ or talk to us on Twitter @headnecknz We want to hear from you. This is a great opportunity to connect, support and advocate. The conversation is under this hashtag #worldheadandneckcancerday. 

Rate my doc: Opening up health data

By Martin Johnston

5:00 AM Thursday Jun 30, 2016

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   Health authorities told they must provide the public with surgical safety records.

Patients must be given access to the data 'across specialties', and yearly updates on progress. Photo / Getty Images

Patients may be able to check their surgeons' safety records before going under the knife under new reporting systems to be put in place within five years.

After inquiries by the Herald, health authorities have been put on notice to start publicly reporting patient death rates and other "outcomes" data of public hospital doctors or the units they work in by 2021.

Ombudsman Ron Paterson has told the Health Ministry patients must be given access to the data "across specialties" by then, and yearly updates on progress were required.

In Britain patients can look up the National Health Service website for these kinds of doctor ratings and in the United States the investigative website ProPublica has published a controversial Surgeon Scorecard comparing about 17,000 US doctors' individual complication rates in a variety of procedures.

Professor Paterson has today, on his last day as an Ombudsman before returning to his academic law career, issued his ruling on the Herald's December 2014 request for statistics from five district health boards on the heart and brain surgery complication rates of surgeons by name. Read more ...

Facebook!

The Head and Neck Cancer Survivors' Support Network is now on Facebook. Thanks to Maureen we have this beautiful image. If you want to connect click the link here.

National Volunteer Week 19-25 June 2016

This year’s themes are Make time - Whai whā and Thanks for making

time - Kia ora mō tāu whai whā.

The 2016 campaign is therefore a call for action. We also want to celebrate

the time made by volunteers and the invaluable contribution they make to

our communities.

Volunteer New Zealand has developed lots of great resources that you can

adapt and use to recognise the volunteers in your organisations. From

posters to certificates and heaps of social media options, it’s all there.

http://www.volunteeringnz.org.nz/campaigns/national-volunteer- week/

More news about immunotherapy

I found this on Facebook tonight. Another article referring to the effectiveness of immunotherapy drug Opdivo which has been approved for use in New Zealand but not for head and neck cancer - yet.

http://www.telegraph.co.uk/science/2016/04/19/drug-doubles-chance-of-surviving-head-and-neck-cancer-for-a-year/?cid=sf24650168&sf24650168=1

Interesting article in Stuff.

http://www.stuff.co.nz/national/health/80658347/health-boards-lag-behind-cancer-treatment-target

http://breakthroughcancerresearch.ie/ebook/eating-well/#p=2

This is a link to an e-book called "Eating Well with Cancer". Below is an extract from the article in which I found the link. It was in the Irish Examiner.

A recipe book, endorsed by cancer doctors and dieticians, offers a healthy and more palatable-looking alternative to the “blitzed in a blender” mush patients often have to contend with when illness makes eating difficult.

[NEWSLETTER] April 2016

April 7, 2016                                                                        From the Editor Hi everyone This is not a full scale newsletter but a short bulletin. Regular newsletters will resume in May. Cornwall Park Meeting Only eight of us made it to Cornwall Park. There were six apologies and maybe some people are still there looking for us. I put my hand up as the culprit, even though you’d think people would know what a “band rotunda” is:) We wasted 15 valuable minutes before we walked up the hill to the Creamery and had coffee under (ironically) a miniature rotunda. Thank you Kevin for buying the coffees. We had an excellent discussion in the end and have welcomed a new member, Adam. The old hands gave him vivid demonstrations on how to do neck exercises. We completed the questionnaire on “five things you would like to be improved about your treatment” and talked about a lot of issues (swallowing, Madonna, dental care, cars, boats, bowling, Shakespeare and motorsport) including moving our new organisation forward. What I’ve learned from this is that big band rotundas are bad meeting places, especially when they’re in the wrong place, but little rotundas with a round table provide a very good venue for discussion. (And please note. Women are also welcome. For some reason I was the only woman on the day.) We are more than Auckland We want to reach out to the provinces and beyond. While we can’t meet people from outside Auckland in person, we can communicate via email, the newsletter, phone calls, the temporary website and the “proper” website when we become incorporated and have funds. The final website will provide a forum for people to discuss issues and get support. We are still one or two months away from this occurring. Meanwhile the blogspot site below,  set up by Diana, is a good way to find the newsletters and other information. Feel free to email us. http://headandnecknetwork.blogspot.co.nz/ Hearing Therapy Service even easier for people to access The national Hearing Therapy Service, a free service for people needing help with managing hearing loss, is now available to GPs via e-referral. Hearing Therapy, provided by charitable trust Life Unlimited and funded by the Ministry of Health, can now be found in the CareSelect referral system on www.healthlink.net.  Referrals can also be made via the online form at http://lifeunlimited.net.nz/hearing/referral-form  or by phoning 0800 008 011. Hearing Therapy helps people manage the impact of hearing loss on their lives – at home, at work and in social situations. A trained hearing therapist will work with a patient and their family or whanau to develop strategies to help them manage living with a hearing loss, as well as providing information and advice on assistive technology and referrals to other health providers if required. Hearing therapists can also provide initial screening tests for people who suspect they might have hearing loss. The Service, available New Zealand-wide, does not sell or fit hearing aids but works closely with audiologists where appropriate.  Hearing Therapists hold the National Diploma in Hearing Therapy and are members of the Hearing Therapist Association of New Zealand (HTANZ). Hearing Therapy Services is available free for all New Zealand citizens and permanent residents aged 16 years and over. Life Unlimited is a not-for-profit charitable organisation governed by a board of trustees. For more information: www.lifeunlimited.net.nz/hearing  or www.facebook.com/hearingtherapy Material taken from the Health and Disability NGO network newsletter March 2016 Progress on New Zealand Health Strategy refresh The draft update of the New Zealand Health Strategy received 415 formal submissions.   A wide-ranging consultation late in 2015, involved more than 100 forums, workshops, meetings, Hui and Fono reaching more than 2,000 people.   As well, more than 7,000 people visited the consultation website.  Since consultation closed on 4 December 2015, Ministry of Health staff have been analysing submissions and feedback, and incorporating changes into the Strategy and Roadmap of Actions, in preparation for Cabinet approval.   This process is expected to be completed soon, the final strategy launched and all submissions published. Next Meeting On May 5  we are back to Domain Lodge. One of our speakers will be Vicki Thompson, specialist nurse from ORL. Her topic will be the multidisciplinary meeting, one of the most daunting but useful parts of our lives as cancer patients. Viv Williams, Manager of Information and Supportive Care Services, Cancer Society, will speak to us about the Cancer Connect programme. For some of us we may be in need of support, for others we can be a support for others with head and neck cancer. Viv will explain how the programme works, and what we can gain from it. For those who can’t be there, we will write as accurate a summary as possible and you are welcome to comment. At this meeting we will be able to have more “five things” questionnaires filled out, do some brief paperwork for incorporation purposes and also have general discussion. Bring all your ideas for our new organisation. If you cannot attend our meeting and would like to email your ideas please feel free to email us. We are looking for the best five things about your treatment and care, and the five things you think could be improved. We will use this information to inform our strategic plan. Contact us Diana: dianaayling@outlook.com Maureen: mjansener@gmail.com Temporary website: http://headandnecknetwork.blogspot.co.nz/