How did @HeadNeckNZ, also known as HNCSSN begin? Seems like a simple question to answer but it’s not. What occurred was a step by step process, a meeting of minds, a cluster of events.
Here are some key dates
2015 September. ACH support group member suggests we brand ourselves, become a charity and have an online presence.
2015 October. Temporary website on blogger.com.
2016 March. First AGM and committee. Take over running of Auckland group from ACH.
2016 June. We become an incorporated society, Head and Neck Cancer Survivors’ Support Network.
2016 July. First WHNCD. Publish stories on Stuff and Scoop
2016 August Start closed FB group: Head & Neck Cancer Support
2016 October Major GaL drive. Open our Ning website with a forum, groups, info and blog
2017 May 2nd AGM New committee member rebrands us with burgundy tui across all platforms and publicity material.
2017 May We begin our role as patient advocates in the Auckland Review of Head and Neck Services.
2017 July WHNCD stall at NSH. Videoed for our contacts around the world
2017 November 250 FB group members. 120 members on website, including 30 health professionals.Check figures . I made them up.
FUTURE: become a charity when have enough officers to step up.
We became an incorporated society in June 2016 after steady month to month progress after the idea was first mentioned by Kevin Bowers in September 2015.
Kevin, Diana Ayling and I were relatively new members of the Auckland HNC Support Group run for decades by a speech language therapist and social worker from ORL. Meetings were held once a month in Domain Lodge over the road from the hospital. When Jeannette and Susan retired in 2014, a clinical nurse specialist took over. Noelle and the patient/carer group wanted to reach out across the country to other head and neck cancer people.
Kevin had a business background and named and provided a logo for the group. Diana, with her legal/business/teaching background was also keen to fulfil Kevin’s dream of a formal, patient run organisation. I had some writing and editing experience, had started writing newsletters for the group in 2014 and became the editor.
From September 2015 to June 2016, Diana worked on producing the documents for incorporation. We had to have aim and goals, a strategic plan and a committee. We added our first out of town committee member, Tammy von Keisenberg, who is a great advocate for head and neckers.
We started a temporary website on Blogger.com and joined Twitter and LinkedIn.
We were fortunate to have connections to a large number of patients who had been treated in Auckland and who were on the original email database for the newsletters. This became the core of our network.
As time went on, Kevin left the groundwork to Diana and Maureen, who were not working at the time, and who began to organise the Domain Lodge meetings and reach out to related people and organisations within Auckland,
We were given a stock of stoma covers to sell by the Cancer Society. Diana contacted clinical directors of ENT in the wider area.
When she met Dr David Grayson of Waitemata District Health Board, a great relationship was developed between his innovative department and head and neckers. He was very interested in the patient voice, digital health and social media. Through David, Diana and I were able to attend a meeting with the Mayo Clinic Social Media people and meet e-Patient Dave of patient advocacy fame. He set up a stall at NSH for WHNCD 2017 and ran it with us.
A major turning point was the creation of a closed Facebook Group in August 2016. We thought it - together with Blogger - would fill in until we got our new website up and running but these days Facebook groups seem more popular than website forums for cancer patients and carers. We thank Adam Love for insisting we get on Facebook - and it worked.
Not only do we have members from Invercargill to Northland, but we have overseas members too, some of them very close - just across the Tasman.
We established a connection to an educational head and neck organisation in Australia called Beyond Five. Our meetings - in any part of New Zealand - are now advertised on their website.
Another turning point was WHNCD in 2016 - we carried out a media blitz, the most successful part of which was publishing Adam’s story on the Stuff website. That had people flooding into our FB group.
October 27th 2016 was another big day for us with the opening of our website. We had fundraised hard to afford a Ning site which enabled us to have groups, a forum and as well as information and a blog. It was slow to get going and needed lots of injections of new life but now it is healthy and functioning well. The discussion however, takes place on our FB group.
A watershed moment was when Olwen Williams joined our FB group and later, after her partner Fred who had head and neck cancer died, joined the committee. Her skills in graphic design and her technology skills have allowed us to brand ourselves in a professional way, especially Twitter where we have made valuable contacts
We have a committee of 6 people from across the country as well as a small group of medical folk as advisory members.
The network is thriving now. We are understaffed but the connections we have made to health professionals, fellow patients and carers are invaluable. We treasure every patient, every doctor, every carer, every nurse, every medical worker with whom we are connected. Together we are stronger.
We thank Kevin for his initial idea.