28 | chronically ill | 2x liver Tx survivor | health strategist and lived-experience advocate | YMH ambassador | governance geek | views my own rt ≠ endorsement
Gadigal Land | Sydney | Aus
Joined May 2015
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This is thread is about my journey as a young person living with complex #chronicillness and #disability, and how despite pain and vulnerability I learned strength and found my purpose as an advocate. Welcome to me!
#DisabilityTwitter #MyDisabledLifeIsWorthy #invisibleillness
Very pleased to hear from @RyanPark_Keira that the #NSWGovernment will be committing additional funding to continue supporting @HCNSW to elevate #consumers, #patients, #carers, and #family as key partners in driving positive systems and service #design and delivery in #health
“…disability is still portrayed as an inherently bad thing, something that cannot coexist with careers, love or happiness. Capaldi’s performance directly challenged this shallow understanding.” Beautifully said @DrFrancesRyan. theguardian.com/commentisfre…
No GP wants to turn away someone who needs help, but patients are increasingly struggling to access care. Investing in improving linkages between Hospital, Primary, and Allied health that supports building capacity to provide care in the community is key abc.net.au/news/2023-06-21/u…
Check out my latest article for @CroakeyNews exploring why remuneration plays an essential role in amplifying lived-experience contributions and generating value for health orgs, and ensuring young people are supported to affect change in health
“(Lack of proper remuneration) speaks to lagging maturity regarding true co-creation and the building of genuine partnerships with consumers”
-Consumer advocate @HarryIlesMann
croakey.org/advice-for-healt…
Chronic pain management reform highlights why it's crucial to patient health and well-being that practitioners, patients and policy-makers inform and author change together. It's unethical to leave anyone without support through this transition.
abc.net.au/news/2023-06-16/o…
Excited to share my latest contribution to @CroakeyNews exploring the importance of remunerating #consumer representatives.
croakey.org/advice-for-healt…
Reforming #medicare to better fund and support highly skilled and experienced health care professionals is a key step towards creating more equitable and sustainable models of community-based care. #communitycare #primarycare #health abc.net.au/news/2023-06-13/g…
The rot at the core of #Robodebt is the abhorrent and unethical belief that there is such a thing as “deserving” and “undeserving” poor. Embedding that thinking is a deliberate attempt to make targets out of the vulnerable to excuse a total failure of decency and a duty of care.
A #PCR shouldn’t need a referral. Forcing #vulnerable Australians to jump through more hoops to access time sensitive care is objectively rubbish.
This will only create greater cost/access inequity for those seeking covid-related care and means more work for GP’s #auspol
The way government, health professionals, and media are arguing over our heads about #Medicare smacks of the same attitudes that disempower patients in care settings every day. There are ways to talk about important challenges that don’t damage public trust, and then there’s this
#vulnerable people have been taking personal responsibility since long before #COVID19. Governments, systems, and society have been failing us for decades. Anyone pushing for more ‘personal responsibility’ really means ‘other people’s responsibility’, and we’re just an easy other
At the Fed jobs summit they trumpeted an ‘inclusive workforce’, but within weeks repealed isolation requirements. The message is clear: #vulnerable people and those with a #disability are not welcome in Aussie workplaces. We’ve entered the era of free-market health policy #auspol
Turns out life post-transplant, with prophylactic treatment for some infectious nasties can get a bit hectic in the pill department. It’s a wonder I don’t rattle.
ALT Top down view of a white medication cup full of an assortment of coloured tablets.
ALT Top down view of an assortment of colourful tablets on a white table top.
harry iles-mann retweeted
Level C telephone Medicare restored but ONLY for the prescription of Covid antivirals
Whilst we welcome this news. It is only a part of what is needed.
Chronic, isolated & vulnerable patients will now either
-need to be cut off at 20 mins
-Come in face to face
-go without
While this is welcome news, committing to sustain the callous actions of previous government only to perform an about-face is not action worthy of praise. This has been yet another episode of self interested politicking at the expense of public trust and the #vulnerable #auspol
Emergency COVID-19 pandemic payments to be reinstated until September 30 abc.net.au/news/2022-07-16/a…
harry iles-mann retweeted
2.5 M Australians don’t use the internet. 1 in 4 are digitally excluded. 40% rural people cant use video calls due to poor internet speeds. Blocking long phone consults means blocking care for rural & vulnerable patients and must stop. @Mark_Butler_MP @RACGP