Independent patient advocacy

An essential building block of clinical governance working under the radar.

Individual health advocacy places the person at the centre of care and decision-making about their healthcare. In a busy and highly fragmented health system, independent health advocacy is a critical part of the safety and quality landscape. Health systems are stronger and safer when people are heard, respected and supported in decision-making. The ability to access independent individual advocacy support can help to restore people’s trust in the health system and rebuild their confidence to speak up in future.

Unprecedented increase in need

Our impact by the numbers

WA leads Australia

Since the 1990s, the WA Government has demonstrated strong leadership by funding Health Consumers’ Council WA (HCCWA) to deliver a free, person-centred and rights-based service across all areas of health and healthcare. This longstanding investment reflects commitment to a community-led model that restores hope, confidence and power to consumers navigating a complex health.

What is independent individual health advocacy in WA?

Skilled independent patient advocates at HCCWA provide one to one support to a wide range of consumers who need support to have their voices heard, or to get answers when things have gone wrong.

HCCWA provides this support

• across the state
• across all areas of health and healthcare (including voluntary mental health patients)
• across all healthcare settings (public, private, primary, hospital, community)

Individual advocacy impact

• Upholds people’s health rights
• Enables dialogue between patients and clinicians
• Helps to repairs relationships between patients and caregivers where they’ve ruptured
• Provides solidarity and encouragement
• Restores power and confidence that has been diminished by a large and complex system
• Enables redress where things have gone wrong
• Saves lives

Independent advocacy provides hope to people at their most vulnerable moments.

HCCWA’s Individual Healthcare Advocacy Service Case Studies

Challenging an unjust $1 million medical bill for a family in distress and holding powerful companies to account

A family coming to Australia to live took out the appropriate level of private health insurance for their visa. Unfortunately, the family needed to access a high level of healthcare. While receiving treatment, the family received a call from their insurance company offering them a different policy with a lower premium, to which they agreed. English is not their first language, and no interpreter was offered. This new policy did not cover the care they were receiving, and so the family became liable for a very significant healthcare bill (over $1m). Our Advocate worked with the family and represented them to the insurance company with the result being that the insurance company agreed to pay the healthcare bill.

Advocate intervention addresses a case of unjust billing

An overseas student was billed for a long GP consultation after a brief visit that lasted around 10 to 12 minutes and included a same day referral to a specialist. The higher charge was more than $100 above a standard consultation and could not be claimed through Medicare due to the patient’s visa status, with private health cover already exhausted. After the patient’s attempts to dispute the charge were unsuccessful, our advocate intervened, referencing the correct billing item requirements. Following several communications, the practice acknowledged the error and rectified the account.

End-of-life choice upheld during fast changing circumstances

“HCCWA was contacted by a family who were concerned that their relative’s rapid health decline was not being adequately recognised and responded to during a hospital admission for abdominal pain. The consumer was subsequently diagnosed with a terminal illness. The consumer decided to access Voluntary Assisted Dying (VAD). Given the conditions that need to be met to remain eligible for VAD, and the consumer’s rapidly declining condition, this case was instantly escalated within our advocacy service. The advocate supported the consumer to seek appropriate and timely clinical reviews, clarify decision-making pathways, and uphold their right to seek and receive clear information. HCCWA’s ability to act quickly ensured the consumer’s preferences, rights, and capacity were prioritised at a critical time.

Restoring quality of life after insisting on surgery review and redress

young man in his early 20s with significant and lifelong disability contacted HCCWA after experiencing escalating pain from a complication following surgery. The procedure differed from what had been discussed and consented to, and post-operative follow up outpatient appointment was not provided. Several GP visits, 2 ED visits and four months later, he still had not received post operative follow up and so remained in severe pain; struggling to access appropriate pain management and unable to resume university study or daily life. HCCWA supported him to understand his rights, be heard within the system, and access urgent post operative review by the surgeon and consider complaint or redress pathways if he chooses. He was admitted for surgery 1 working day after our Advocate spoke with the surgeon.

Western Australians who have used Health Consumer’ Council WA’s FREE Individual Healthcare Advocacy Service (IHAS) say:

Community led, government funded

A powerful partnership that established Australia’s first independent health advocacy service
In 1993, the then Minister for Health offered health consumer leaders the opportunity to set up a non-profit organisation to act as an independent voice for health consumers on all aspects of health and healthcare. The intent had been to advocate at a systemic level for the rights and interests of health consumers, patients and families. Yet when this new organisation was featured in the media, the small team were inundated with requests for help from people who needed answers from the health system about individual issues. And so, those staff started to deliver individual health advocacy “because they couldn’t not”.

Increased investment is now required to ensure this “under the radar” service can continue to be there for every day West Aussies

We are in discussions with WA Health about the future of this ground-breaking initiative. After 3 decades, the investment in this service has not kept pace with demand, or with the increased complexity of people’s experiences in healthcare.

Since the HCCWA budget was last reviewed in 2014, WA Health’s budget has increased by 74%, MHAS expenditure has increased by over 110%, but investment in HCCWA’s capacity has only increased by CPI (27%).

We will be seeking support for a budget business case to ensure that this Australia-first program can continue to play its part in the continuous improvement of the health system, and ensure that Western Australians can continue to be heard, respected and supported.

As a minimum, we want to be able to be there for anyone who is involved in a serious clinical incident WA. We estimate that this requires an increased annual investment of $1.9m.

Shifting the dial on patient safety – on-site patient advocates, strengthening consumer voices

Internationally, evidence suggests that approximately 10% of healthcare causes harm. One contributor to this is patients and families being dismissed when raising concerns in a clinical setting.
In a busy healthcare setting, patient concerns can go unheard. We believe on-site patient advocates – independent of the WA Health system – would significantly strengthen patient and family voices, enabling their voices to be heard alongside the clinical experts.

This would require a significant phased investment and we would welcome the opportunity to be involved in shaping how this might look for WA.

For further information about this report please contact Health Consumers Council WA on 08 9221 3422 or info@hconc.og.au

To discuss any of the content, please contact Clare Mullen, Executive Director at CEO@hconc.org.au