5 Mar

CFNZ Board Update - March 2020

5 March 2020

The first CFNZ Board meeting for 2020 took place on 1 March.

Firstly, it is with sadness that the board needs to farewell Ed Campion and Melissa Skene from the National Team. We have been very grateful to have the wisdom and energy these two people have brought to the board. Ed is off to start a new job in Oz and we wish him all the best with this new move.  Thankfully Melissa is only leaving the board and will still be a vital part of, and chair of Canterbury branch.

In the meantime, we have welcomed Andrew Cameron, a Wellingtonion and dad of two gorgeous daughters including Charlie who has CF. Andrew joined us for our first meeting of the year and strategic day. We know he will be a valuable addition.  Andrew brings an enormous wealth of experience working in the health sector.

Our first meeting was a 2-day affair which started by reviewing and refining what we want to achieve and what our absolute priorities are for the next 12 months.

Up first was a look at the fantastic success we have had since the last meeting. PHARMAC‘s decision to fund Kalydeco is Huge! For the first time it feels like our major goals of the best medical treatment for all people with CF are within range.  It is important to take a moment to acknowledge how important this is in the history of our organisation.  Also, to acknowledge the people across CFNZ and Kalydeco for Kiwis who have worked hard and contributed to this fantastic outcome.  Well done!

We then looked to the next phase of our advocacy plan.  Our goal as always, is world class clinical care delivered equitably across NZ. And right now, that means we want Trikafta! The next step is working out the most effective way to have it available in NZ.  We will update you as we work through this plan.

A major piece of work that is well under way, is the research being carried out by Deloitte into the cost of living life with cystic fibrosis. We are so excited to get these results and finally have evidenced based data available.  Research such as this and the now significant data that has been collected through Port CF will provide vital knowledge and be invaluable in our efforts to advocate for the next medical goals. 

The board has a strong commitment to equity and focusing on how we can achieve the best possible support for all our community.  In light of this, it was fantastic to hear that all DHBs will now take up the funding of essential medical equipment.  This is a significant achievement, and something we have been working toward for a long time.

CFNZ has four stated organisational values, and we took some time to look at how well they reflected and align with our direction and how we work.  It was decided this will be an ongoing piece of work as they are not as clear as we would like, and need some more thought.  Branches will have an opportunity to consider this as we do this piece of work.

Find a link here > to our latest Annual Report. As a whole organisation we are delighted to present this document.  It contains comprehensive information reflecting our commitment to achieving our strategic goals.  You will find lots of stories and examples of how this has happened. It’s a great read.

Finally, I would like to mention an important piece of work for the board that has kicked off in the last few weeks. 

The Organisational Structure Project.

What’s this all about?

At the chairpersons conference in September 2019, in conjunction with guidance from the Fisher Report, we identified that changes to the environment that charities operate in raises serious questions about CFNZ’s ability to meet legal and financial requirements as well as the increasing difficulty in engaging our volunteer base. It was agreed that a team should be set up to look at this in greater detail.

The team is tasked with looking at models for our organisational structure that could better enable us to:

  • Be legally and financially compliant
  • Maximise fund raising
  • Be in control of our data
  • Ensure good volunteer engagement (with trust, support and alignment)

Who is on the team?

The team is led by Michele Wilson but includes 8 willing volunteers from around the country who will meet to thrash out these meaty topics, and hopefully agree on an alternative structural model to be presented for further consultation with branches and board.  We will provide updates to branches after each meeting and consult more fully when we have reached some decisions. The team want to be able to present a proposal to the CFNZ membership at the AGM in mid-September.

- Michele Wilson