Carers Week: Helping shape more inclusive health services

For Ciara McKillop, being a carer has inspired a commitment to advocacy, inclusion and collaboration. 

Now, as co-chair of Southern’s Community Engagement Committee, she’s using her experience to help ensure carers voices are heard in shaping the services that support them.

As a proud mum of two, my journey as a Carer began when my eldest was diagnosed as Autistic, ADHD and with Chiari Malformation - a rare brain condition.

Every day brings new joys and challenges, whether it’s navigating medical appointments, advocating within education and other systems, witnessing their success or simply making sure there’s a safe, calm space for my kids to be themselves within the community.

Running Carers and Parents Spectrum Supports (CAPSS) in our local community lets me channel my passion for inclusion and carer wellbeing into real action. We set up chill out spaces at events and offer a listening ear to families just like mine. Recently, I finished a grad cert in Diversity, Equity and Inclusion at UNSW, which has given me even more tools to fight for change.

Being a carer isn’t always easy, but it’s full of love and fierce determination. My hope is to shine a light on the strength and resilience of carers, and to remind everyone that behind every carer’s story is a human being simply wanting themselves and loved ones to thrive.

Carers face a unique set of challenges that often go unseen by those outside their immediate circles. Juggling the demands of medical appointments, therapy sessions, and educational advocacy can be exhausting, physically and emotionally.

Many carers experience burnout from the constant need to be ‘on’, handling complex situations while balancing work, family commitments, and their own wellbeing. This relentless schedule can make it difficult to find time for self-care or simply to recharge, which is essential for sustaining their ability to care for loved ones.

Social isolation is another common hurdle, as carers may have less opportunity to connect with friends or participate in community life. The emotional toll of advocating for a child or family member with additional needs, while navigating systems not designed with them in mind, can lead to feelings of frustration or helplessness. Financial pressures often arise too, with many carers needing to reduce or leave paid work or cover out-of-pocket costs for therapies and supports. Despite these challenges, carers frequently show remarkable resilience, drawing on their love and commitment to keep moving forward for their families.

Accessing appropriate supports is not always straightforward, with services sometimes difficult to find or inadequate for families’ real needs. Carers may struggle to have their voices heard by professionals, reinforcing a sense of being overlooked or undervalued. That’s why connection to peer networks and inclusive community programs can make such a difference, offering understanding, practical advice, and a chance to share the load. 

Ultimately, recognising and supporting carers is vital - not just for their own wellbeing, but for the thriving of the families they hold together.

I joined Southern NSW Local Health District’s community engagement committee because I believe that authentic, lived experience is essential in shaping health services that genuinely support families and carers. Through my journey as a carer and my work with CAPSS, I’ve gained valuable insights into the system - its strengths, its gaps, and the opportunities for meaningful improvement. By stepping into the co-chair role, my aim is to work alongside health professionals and community members to ensure that carers’ perspectives inform practical, inclusive solutions. Together, we can strengthen access to supports, foster inclusive community programs, and build a culture where carers feel seen, heard, and valued. My goal is to nurture a collaborative relationship between health services and the community - one built on trust, shared understanding, and a commitment to lasting, positive change.

For more information about National Carers Week, visit www.carersweek.com.au.