Louise Maher, Tackling Stigma Champion #10: From one small team to district-wide change
About six years ago, Louise Maher was sitting in a meeting becoming increasingly frustrated.
As a health promotion practitioner working in blood-borne viruses at Nepean Blue Mountains Local Health District (NBMLHD), she knew stigma was affecting the people she worked with. What she couldn't work out was how a small team working in hepatitis, HIV and sexual health was supposed to tackle a problem that seemed to exist everywhere.
Then she blurted out something that would shape the next six years of her career.
"For goodness sake, we don't own stigma."
That realisation sparked the Inclusion Collaborative, a district-wide initiative that brings together staff, consumers and leaders from across NBMLHD to create a more inclusive healthcare system.
In our latest Tackling Stigma Champion interview, Louise reflects on building the Inclusion Collaborative, what she's learned about creating organisational change, and why the word ‘stigma’could be doing even more damage.
Louise's tips at a glance
Remember that no single service owns stigma
Build alliances across departments facing similar challenges
Focus on inclusion rather than leading with stigma
Give staff permission to test ideas and lead change
Partner workforce teams with community-facing teams
Create visible opportunities for people to learn from different experiences
Show leaders the work in action rather than relying on reports
Expect competing priorities and plan for them
Build accountability structures that survive staff turnover
Advocate for inclusion and stigma reduction to be embedded in standards
Tell us about your journey into this work
I started my career as a nurse before moving into health promotion, drug and alcohol, and eventually blood-borne viruses.
Throughout that journey, I became increasingly aware of the stigma experienced by people with certain health conditions, whether that was drug dependence, hepatitis C, HIV or sexually transmissible infections.
Stigma reduction was written into our strategies and plans. It was an expectation. But that raised a really important question: how do you actually do it?
You once had a realisation that "we don't own stigma". What did you mean by that?
About six years ago, our blood-borne virus and sexual health promotion team was discussing our strategy and what we could realistically achieve.
I remember becoming quite frustrated and saying, "How are we supposed to reduce stigma?" We were a very small team working in a field that sits somewhat outside mainstream healthcare delivery.
Then I had a lightbulb moment. I said, "For goodness sake, we don't own stigma."
If we were struggling with it, then surely our friends in mental health, disability services, obesity services and many other areas were too.
They might not have it written into their strategy, so they might not be as accountable as we were, but I bet they felt it too. And that was the seed.
What happened when you brought together people from different services who were all grappling with the same issue?
I started reaching out to colleagues across different services and asking whether they shared our concerns. The response was overwhelming.
It almost felt like forming a union. We had all these people coming together saying, "Yes, this matters to us too." Very quickly, we had representatives from 13 different services involved.
At the same time, there was increasing discussion around diversity, inclusion and belonging within the workforce. That created an opportunity to establish a partnership with population health, which focuses on communities, and with workforce teams, which focus on staff, to lead this work.
Most of our staff live within our local health district. They are our community. Many identify with the same groups we are trying to support through this work.
Over time, those 13 participating services evolved into what is now known as the Inclusion Collaborative.
The Collaborative brings together representatives from across the health district, along with consumer representatives, to identify opportunities to make healthcare more inclusive for patients, visitors and staff. It oversees initiatives such as the Festival of Inclusion, a seeding grants program and broader organisational change efforts across Nepean Blue Mountains Local Health Districts.
One of the biggest shifts in your work was moving from talking about stigma to talking about inclusion. Why?
That was a very deliberate decision. When you ask people about stigma, most people don't think they're contributing to it. They think stigma is something other people do.
We worried that if we led with stigma, people would switch off because they didn't see themselves in the conversation.
So we flipped it.
Instead of talking about stigma, we started talking about inclusion. We talked about creating a healthcare system that welcomes everyone, regardless of their culture, religion, gender, body size, health condition or life circumstances.
At its heart, the work is still about reducing stigma. We haven't lost sight of that. But leading with inclusion opened the door for more people to engage.
Ultimately, we just want everyone who works here to treat people with kindness.
Can you share some practical examples of inclusion and stigma-reduction activities you've implemented?
One of the first things we launched was the Festival of Inclusion.
We realised that Zero Discrimination Day gave us a natural focal point, so we created an annual event that encourages staff to think about diversity, inclusion, stigma and discrimination. Each year looks a little different, but the principle remains the same: creating space for people to learn from experiences that may be very different from their own.
We also launched a seeding grants program. Starting with a pool of $30,000, we offered grants of up to $5,000 for staff with ideas to make their service more inclusive for patients, visitors or colleagues.
We're now in our sixth round.
The projects have ranged from community art collaborations and children's libraries featuring diverse books, through to service-wide reviews of policies, procedures and intake processes. One project produced a video showcasing the role of peer workers in mental health settings. Another focused on creating more welcoming community spaces.
What I've loved most is seeing people bring ideas we never would have thought of ourselves.
One of our Chief Executive's observations was that the grants gave staff permission to dream. Five thousand dollars isn't a huge amount of money, but giving people the support to be creative, test ideas and try something different has been incredibly powerful.
How do you measure success of these initiatives?
Results are always difficult to measure in population health. It's not as simple as saying we started here and ended there. But one thing we can clearly see is growing involvement across the health district. People want to be part of it.
Consumer participation has also become a central part of the work. We now have consumer representatives on our working groups and steering committee.
Another major change is accountability. What started as a grassroots movement has evolved into a governance structure with executive involvement, reporting through to the Board.
That matters because health systems are large, complex and often siloed. Building a structure that sits across those silos has been one of the biggest achievements.
What are the ingredients needed to create organisational change?
I think it requires a few people with a big enough vision to see what could be possible.
We've been fortunate to find people across workforce, population health and other parts of the organisation who understood the value of the work and wanted to help move it forward.
But leadership matters too.
One of the most encouraging moments for me happened this year when our Chief Executive agreed to open our Festival of Inclusion. We were told he could only stay for ten minutes. Instead, he stayed for more than an hour.
He listened to staff present their seeding grant projects and afterwards committed to continuing the grants program.
What changed wasn't a report. He already knew about the work. It was seeing the projects come to life, hearing the passion of the people involved and understanding their potential to create change. For me, that reinforced an important lesson: sometimes people need to experience the work, not just hear about it.
Looking back, what did you learn the hard way?
One of the biggest challenges at the start was simply trying to explain what we were doing. As I often say, the work can feel a little bit up in the clouds.
Early on, when we were trying to explain the Inclusion Collaborative to people, I said, "The byline for the Inclusion Collaborative is just as simple as: be kind, and get stuff done.
And that has absolutely stuck.
It's not rocket science. It's really about being kind to people and recognising that you don't know what's going on for them.
But trying to articulate that in a system built around plans, budgets, accountabilities and measurable outcomes can be surprisingly difficult. Trying to say, "Hey, I had this idea that we should all be nice to people," and then make that sound convincing has been a challenge.
The other lesson was much more practical.
When we first launched the seeding grants, they weren't aligned with the financial year. Some projects spent their funding straight away, but others were still in the planning phase when the end of the financial year arrived and the money disappeared.
That was awful. It felt like such a disappointment for those project teams and a steep learning curve for us. We now align the grants with financial cycles so recipients have a full 12 months to deliver their projects.
What other challenges have you had along the way?
Time is always a barrier.
COVID had a huge impact on the health system. Staff were exhausted, burnt out and carrying enormous workloads. To then come along with another initiative, no matter how worthwhile, was difficult.
We had to be very careful not to create another demand on people who were already stretched.
The other challenge was that many people didn't see themselves as part of the problem.
When you're asking someone to invest time and energy into stigma reduction, but they don't believe they stigmatise anyone, that can be a difficult conversation.
Healthcare is also driven by budgets, KPIs and competing priorities. Convincing people that this work matters when it isn't explicitly written into their performance measures can be challenging.
If you had five minutes with a hospital CEO or policymaker, how would you convince them this matters?
I'd tell stories.
I think the more you can personalise it, the better. If somebody you love was transgender, or living with a health condition, or experiencing stigma in some other way, how would you want them to be treated?
It's always worth having a few good examples in your pocket.
One that has always stayed with me involved a trans man who was admitted to a men's ward. During a consultation, a clinician began asking questions about menstruation and childbirth history while other patients sat only a few metres away behind curtains.
The questions themselves were clinically appropriate but the setting wasn't.
The patient was incredibly generous in the feedback he gave, but it was a powerful reminder that many healthcare workers would never intentionally cause harm. Stories like this help people recognise how easily everyday systems, environments and routines can create experiences of stigma and exclusion.
What change would you like to see happen over the next decade?
I'd love to see stigma reduction embedded into healthcare standards.
Right from the beginning, we had all the passion. We had people who cared, people who were willing to put their hand up and do the work.
But we had no sticks. We didn't really have anything to say, "Actually, people need to listen to this."
I think the biggest stick we have in healthcare is the standards.
If stigma reduction and inclusion were built into those standards, health services would have to pay attention. It wouldn't just rely on passionate people pushing for change or trying to convince others that it matters.
To me, that's where the opportunity is.