COVID, consenting to medical research, cancer information, and promoting health
The first few weeks of 2022 have been a busy time in health in WA…
Preparing for and living with COVID
Those weeks have been a time for everyone at Health Consumers’ Council of intense listening to, sharing and advocating for more consumer voices in the planning and preparing the health system’s response to preparing to live with COVID.
In that time we’ve held three discussions with consumer leaders and representatives across WA to hear what was on people’s minds as they were preparing themselves, their families and their communities for living with COVID.
Key messages we heard were that there was a sense of fear in some parts of the community as people navigate the shift from “COVID is to be avoided at all costs” to “we are living with COVID”. We also heard that there was a lack of information for health consumers who have underlying conditions, or who are immunocompromised, and need to make additional preparations. And the third strong message was people’s concerns were not just for their health, but the social implications of COVID. For example, who can people rely on if they’re a carer and they get sick? How do people get access to care if they’re unable to leave the house? What should they be doing to make sure they can get access to the healthcare they need – and stay safe?
And finally, we heard a strong message from health consumers about the opportunity to help people feel more empowered and confident in their ability to prepare.
We’ve shared these concerns with health leaders including the Minister for Health, health service Chief Executives and the teams leading the COVID response at the WA Health Department and the WA Primary Health Alliance.
By the end of last week, we’d seen a couple of significant changes – South Metropolitan Health Service had published information on their websites for people who are immunocompromised, and some patients who are at a higher risk of developing severe disease if they contract COVID are receiving calls from their specialists to help them work out how they can prepare themselves and their families.
We also were able to get information about the new COVID Care At Home program out to over 110 people who registered for a community conversation with Dr Robyn Lawrence from the Health Department, as well as getting into out to the broader community via a mention in Renee Gardiner’s column in The West.
The next focus will be to keep getting the message out into the community – particularly to those groups where mainstream communication methods like websites and news media in English are not widely used.
The other focus will be on encouraging other people in the community to play their part in getting information out to the people who need it and to look out for their neighbours or family members who might value a bit of support. As one consumer who was quoted in the article in The West said “We are all in the same storm but the boats are so different it’s hard to hang out in the tinny with a hole in when others are in their yacht.”
And it’s not all about COVID… have your say!
As we finalise our preparations for living with COVID it’s important to remember it’s not the only health issue that’s important for the WA community. There are a couple of key consultations that are looking for consumer input:
- What are your views about the issue of giving consent to treatment – particularly if you’re incapacitated?
- The Guardianship and Administration Act Part 9E came into existence on 7 April 2020 “to enable medical research to be carried out in respect of persons who do not have the ability to consent to it.” While it might seem a bit dry, it could make the difference between someone accessing cutting edge treatment that is part of a research program or not.
- Find out more and complete the short survey by 25 February at https://www.surveymonkey.com/r/GuardianshipAdmin9E
- Have you or someone you know had cancer? What information was, or would have been, most helpful?
- A team of researchers at UWA and WA Department of Health are researching the information needs of people who are diagnosed with cancer. This is part of the WA Cancer Plan implementation. This survey closes on 28 February. Please share it widely
And finally – towards a healthier WA
This month we also made time to respond to the WA Department of Health’s consultation on the WA Health Promotion Strategic Framework. We called for a stronger focus on health inequities, the recognition of early childhood trauma on our longer term health, and encouraged a bold vision for a healthier WA that the whole community can buy into.
You can read our submission here https://www.hconc.org.au/wp-content/uploads/2022/02/WA_Health-Promo-Strategic-Framework-HCC-response-040222.pdf
Clare Mullen, A/Executive Director