The Consumers Health Forum of Australia (CHF) hosted a webinar on Friday 5 August with the Hon Mark Butler MP, Minister for Health and Aged Care. Rare Voices Australia’s (RVA) Chief Executive Officer, Nicole Millis, was pleased to be one of eight health consumer advocates who had the opportunity to ask the Minister a question during the webinar.
Nicole’s question drew on Action 2.1.4 of the National Strategic Action Plan for Rare Diseases:
Develop the capacity of rare disease organisations to represent and advocate for people living with a rare disease and their families.
RVA has noted the significant issues with the subtitles/closed captions on the recording uploaded by CHF. To ensure that members of the rare disease community who are reliant on captions can access Minister Butler’s response to RVA’s question, we have created a transcript of the question and answer.
The below transcript begins at 30 minutes and 50 seconds.
Nicole Millis: Hi Minister. Thank you for today. I’m also on the land of the Wurundjeri people of the Kulin nation today. My question is around consumer-led health and disease organisations. They’re an important part of the health sector, particularly in the rare disease sector. Yet those organisations are often under-resourced, largely volunteer based, often reliant on volunteers who themselves are living with a rare disease, or their long-term organisational sustainability is uncertain. How will the government ensure that this person-centred part of the sector builds capacity and is strong and sustainable?
Minister Butler: Thanks Nicole. Great to see you again, [I] look forward to working with you in a new capacity. I’m in a new capacity, you’re still in the same, but really look forward to working with you. As I said, one of the things I’m doing as a new Minister is trying to get a sense of what support arrangements were in place from the former Government.
So, as you know, many others on the webinar might know, there’s a range of different arrangements that could entice this sometimes core funding, particularly with some of the peak organisations and then grant funding that can be provided for particular projects.
I know that that places a lot of pressure on organisations that are already not well-resourced to have to sort of continue to apply for grant after grant after grant. That can take you away from doing your core work if you’re constantly involved in putting in these applications.
I don’t yet have a good, good and complete sense of where the department is up to with its arrangements. You know, frankly I think some of those funding support arrangements were cut after we lost government last time. So, you know I know a number of organisations I’ve been dealing with had their funding removed. We’ve already been able to reinstate that, particularly in areas that we’re very concerned about, health areas we’re very concerned about right now. But I just encourage organisations to you know, we’re at the point as a new government, where we need feedback, you know about where the gaps are. And I can talk to my department, I can read briefs. That’s no substitute though for getting direct feedback from people on the ground who are doing this really important work. So that’s about all I can say to you about that Nicole nine weeks in. Still pretty early days but I’m finding gaps and trying to fill them where I think it’s really important.
Nicole Millis: That’s fine and we look forward to further discussion. Thanks.