“What happened to ‘we’re all in this together?’”
What are consumers and consumer organisations saying about living with Covid in NSW? We met with our COVID consumer taskforces to discuss the current issues impacting consumers and consumer organisations and collected experiences through Amplify. We spoke to consumer leaders and consumer organisations from around NSW and this is what we are hearing:
- Consumers feel they are disenfranchised, disconnected, and no longer feel like partners in care. “I want to hear stories not opinions.”
- Current messaging is stigmatising, isolating and confusing. “What happened to ‘we’re all in this together’?”
- Consumers are feeling disenfranchised and disengaged from health planning. “I’m starting to wonder if the 20 years I spent as a consumer representative was worth it. If they won’t involve me in this [planning for the pandemic] then why am I doing this?”
- Consumers want to know what the plan is to move forward in health for the next 3-5 years.
- Access to ongoing treatment for non-Covid health issues.
- Continuity of care. “Give people the autonomy to make their own assessment about what they’re comfortable with.”
- Access to Rapid Antigen Tests.
- The burden on carers and family members. “Carers feel they are being told it’s none of their business.”
- Covid self-care in the community.
- Isolation/lack of connection and the mental health impact.
What do consumers and consumer organisations say they need right now?
- An emergency strategy that involves consumers and consumer organisations.
- Actively bring consumers and consumer organisations into planning for COVID-19 responses and health messaging, at both NSW and local levels.
- Return to messaging emphasising working together to protect people who are medically vulnerable and not overloading the health system.
- Assistance for consumer organisations to access RATs.
- ideally by facilitating the supply of free RATs from NSW Health stocks directly to consumer organisations.
- assistance in accessing bulk supplies of RATs.
Our next report will focus on the incredible resilience and mutual support communities in NSW are showing in the face of these challenges. We will continue to listen and respond to consumers experiences with Covid-19 and will work closely with health consumers and organisations to capture and share those experiences.