From the President

GAVIN FINKLESTEIN
Gavin Finkelstein is President, Haemophilia Foundation Australia

In my role as President of HFA I am often asked about what HFA does, what the role of the HFA Council is and what I and other HFA volunteers do as part of that.

So, in this edition of National Haemophilia I thought it would be a good time to talk about the governance of HFA and how things work. There are many “cogs in the wheel”, and it is really important that everyone plays a part so things come together.

HFA COUNCIL

The Council is the governing body of HFA. It is made up of Delegates from each of the State/Territory Foundations. So, when we talk of members there are actually two levels. HFA’s members are the State/Territory Foundations, the actual organisations, while the members of the State/Territory Foundations are the individuals and families who join the Foundation in their state/territory so they can participate in their local activities. These activities might range from regular camps and peer support workshops to education bursaries and subsidies, and other support to their local members depending on the policies of the local Foundation and its capacity to offer support.

An important part of a local Foundation’s work is to ensure the needs of the bleeding disorders community are well represented and responded to at a state/territory level and this may result in local advocacy and representation. This advocacy/representation might include advocating for Haemophilia Treatment Centre services or state government funding to support the State Foundation and its services.

One of the most important ways a local Foundation is involved in HFA is the role their Delegate plays on the HFA Council. Council sets the policy direction of HFA and determines its plans and priorities. The HFA staff team, led by Sharon, then works to put these into effect. So it is really important that the local Foundation Delegate can represent the local Foundation as well as wear a “national hat” representing what we do for the whole of our bleeding disorders community.

ADVOCACY AND REPRESENTATION

It is important that HFA represents the needs of the community, and is accountable to its membership – ie the local Foundations. So, the issues HFA deals with are usually generated from concerns and ideas that work their way up from the local Foundation to HFA. These issues can be addressed from a broader point of view, drilling down on behalf of everyone with bleeding disorders or parts of our community.

This might lead to advocacy and representation to federal members of parliament, federal government bodies or committees for treatment and care, and to education and peer support programs developed by HFA. Examples of this are the national youth camps and leadership training, national conferences, education materials available in print and on the HFA website.

HFA relies on a network of relationships and sometimes quite strategic alliances with other stakeholder organisations in the blood sector and other areas which provide family and disability support, treatment and care. Sometimes HFA asks very specific questions – you will have noticed we often run short surveys and invite people to participate via the HFA website, facebook and enews. We can ask specific questions about specific topics that inform our policy or representation. HFA plan to run a large national survey in June on a range of topics so we can make sure we are keeping up on the issues people are concerned about.

THE NEW HFA COUNCIL

The changes to the HFA Constitution last year were made with a view to a closer engagement between HFA and local Foundations and quicker decision making. Each member Foundation will have just one Delegate on Council (previously the larger states had two) and that person will usually be a key leader at local level who will be able to support the communication back and forth from HFA, local Foundation and vice versa so we can make more timely decisions.

HFA STAFF AND OFFICE

HFA is set up with staff and resources to look after things like writing submissions, liaising with other national bodies and organisations, researching and developing education resources to save local Foundations having to “re-invent the wheel”. HFA also provides logistical support to Foundations, and to states that do not have a Foundation and the capacity to represent their community.

HFA also coordinates national awareness campaigns, national conferences and runs a national fundraising program to help all local Foundations. Through the National Fundraising Program, HFA staff make applications to philanthropic trusts for local projects and activities around Australia. This includes funding for some of the camps and peer support workshops that local Foundations run for their members. This is getting tougher and tougher and we are trying different ways to achieve success in this area.

HFA PRESIDENT

So what do I do? I am the President of HFWA and the HFWA Delegate to the HFA Council. My role as Delegate is as I have already described. However, Council has also elected me as President of HFA and it is my honour to serve the community in that role. As the HFA President my role is to ensure we do things properly, that we include the right people in our decision making and that we meet our statutory and regulatory obligations and that we represent and report appropriately to our members. I am often the “public face” of people with bleeding disorders and attend meetings on behalf of HFA to represent the concerns of interests of our members. For example, I recently appeared before the House of Representatives Parliamentary Committee on Health to describe my own experience of hepatitis C and that of others in our community.

BEING PART OF HFA

But it is a team effort – our local Foundations, our volunteers at both local and HFA level and our staff are critical to our successes. And beyond that our stakeholder relationships are important, including those with our Haemophilia Centres and treating health professionals.

How can you be involved? Our aim is to represent our community in the best and most professional way we can. But if we are to be the collective voice of the community, it’s important that we know what you think and what your needs are, so please feel free to have your say. Talk to your Foundation and your Delegate, answer our surveys, tell us your point of view – ring us or email us, if you prefer. We’re always open to suggestion and keen to know what’s important to you.