Palliative Care Connect

Navigating the health system for my mum living at home with dementia

“As a 56-year-old Australian with parents in their 80s, navigating this stage of life isn’t something you’re taught – you learn as you go. I spoke with a Palliative Care Connect Navigator, and it was a remarkable experience. He listened patiently as I explained my concerns, then helped me break everything down into manageable steps. I was particularly worried about an upcoming meeting with my mum’s doctor, unsure of how to communicate effectively. He provided me with clear, succinct language that worked well. The reassurance he offered was invaluable, confirming that I was on the right track. He also advised to book regular meetings with the GP, and this led to immediate, positive action. The service was warm and reassuring, helping to break down complex problems into simple steps.”

Accelerating community support for my mum living at home with cancer

“I completed the online form at 10pm on a Sunday. The form was straightforward, without having to go into too much clinical detail. By 8am the next morning, I received a call back from a Palliative Care Connect Navigator. From the start, I felt supported. After our phone conversation, he emailed everything we discussed, explained in writing what he was going to do and provided useful links. Within 24 hours, my mum had bed sheets delivered, and a community nurse scheduled to visit us. The nurse has since visited three times. Before this, Mum hadn’t left the house for 10 days, and now, we’re working on finding the right pain medication. The Navigator’s compassion and knowledge were clear, making a difficult situation more manageable. He even followed up with the service, and fortunately, the same nurse returned, which was comforting. The service is truly amazing.”

Understanding if the level of palliative care my partner is receiving in residential aged care is right

“The whole family was stressed and unsure about the care Edward was receiving from the nursing home. The Navigator was very kind, tuned into my heightened emotions, and put me at ease. They helped me realise Edward was receiving the right care for his dementia, and suggested I raise any concerns with the aged care staff. From that moment, the anger and worry began to fade. My son was also quite distressed about the whole thing, and within 30 minutes of calling, I had answers that calmed my family. It’s a fabulous service, and I will recommend it to many people. The Navigator’s approach made all the difference for me and allowed me to focus on spending quality time with Edward, instead of trying to figure out if there was anything wrong.”

Exploring palliative care supports and services for people with complex needs

“As a Care Finder I have referred colleagues to this service, especially in situations where personal matters, like a family member being transferred to a nursing home, were involved. The Navigator’s access to the different systems to coordinate supports was incredibly helpful, and their ability to verify existing connections exceeded my expectations. They helped identify gaps in the system and discussed better solutions for the client, including working towards NDIS. While I wasn’t emotionally involved, I can only imagine how magnified those feelings would be for someone personally affected. The Navigator’s approach was crucial – they were empathetic and really took the time to understand the situation.”

The help we didn’t know we needed

“By the time we reached out to the service, we were completely at our wit’s end. We just needed someone to listen and guide us. It was like a weight had been lifted when we finally found someone who understood our frustration and could provide the information and referrals we so desperately needed. The Navigator suggested things we hadn’t even considered, like planning ahead if my dad stayed at home rather than going to a hospice. She helped us think beyond the day-to-day, which was something we hadn’t been able to do. The only regret is that we found out about this incredible service so late. The Navigator truly made a difference, providing comfort and empathy. She was amazing – an absolute lifesaver.”

Navigating health and aged care systems, and options for my mum living at home with cancer

“They were incredibly emotionally intelligent in how they provided information. They helped me understand where things stood for my mum at that moment and what the next steps were. They gently walked me through the reality of her situation, which was exactly what I needed at the time. They took their time to explain things, sitting with me through my distress and guided me. They also asked how I was feeling and how I was coping, which was nice as I had not had anyone asking about me for so long. They also explained how different systems, like My Aged Care, work together – something I had no knowledge of before. By the end, I felt informed and capable of navigating it for my mum, at my own pace. Their embedded clinical knowledge was evident in our conversations, , addressing every aspect with care and expertise.”