Living with COPD and CHF

As part of our community consultation process, we’ve met with a lot of people across the Murrumbidgee district with chronic conditions to ask them about their health journey and how it could be improved.

Peter’s story is an example of a health care journey that could benefit from the new, streamlined pathway established by the Living Well initiative.

In 2005, Peter was diagnosed with Asthma ABPA (Asthma Allergic Bronchopulmonary Aspergillosis).

Living in Sydney, Peter was initially referred to a respiratory specialist by his GP and the process from diagnosis to initial treatment took some time to rule out several options but resulted in a clear diagnosis. Despite his health needs, Peter felt confident that he was in good hands.

Ten years later, Peter moved to a small Riverina town and while the move was right for him at the time, it also came with challenges to managing his chronic condition. Through local healthcare providers, Peter was linked to the closest respiratory specialist in Wagga Wagga – an almost three-hour drive away. He routinely made the drive for ongoing treatment and while it was not the same level of care he had while living in the city, Peter was able to use the resources at his disposal to travel and have his needs met.

Today, Peter is 75 and lives in Wagga, which has made accessing care easier. His ongoing treatment of Xolair injections are now administered by a local GP, and he also sees a respiratory specialist who travels in from Sydney.

However, Peter is not confident that his GP has the level of knowledge and experience needed to manage his condition and feels there is insufficient communication between specialist and GP. He recently requested a referral to a different specialist because of access difficulties and because the last one felt quite junior compared to the highly experienced specialist he had seen in the past.

In the past 15 months, Peter’s health needs have been escalating. In December 2021, despite him believing his symptoms were not properly understood, Peter underwent a Bronchoscopy, which was carried out by a Wagga specialist. Following the Bronchoscopy, Peter found it very difficult to make the appointments needed to access his results as fast as he would have liked. Antibiotics were prescribed following the procedure to treat newly diagnosed conditions with side effects felt such as losing his voice. Again, there was difficulty in initiating an appropriate review for medication change that further led to Peter questioning his care team.

The entire process has left Peter wondering who he can trust to help him manage his condition and questioning the standard of care he has received.

If Peter had access to the Living Well Care Pathway previously, his health journey could have been significantly different. In future, people like Peter will have improved and more timely access to specialist, multidisciplinary care teams who can develop tailored care plans and link them to appropriate community-based support and education.

It is our hope that Living Well will see Peter receiving a more streamlined and improved standard of care, feeling more in control of his health, and living comfortably with his condition.