Stacey
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Stacey is a First Nations woman in her 30s who lives with a chronic heart condition and post-traumatic stress disorder.
‘I’ve come to be what I am today,’ Stacey told the Royal Commission, ‘through negligence with, you know, the diagnosis of what I’ve got.’
About nine years ago, Stacey was ‘taken by ambulance’ to hospital.
‘Couldn’t breathe properly, found out that I had double pneumonia, was admitted to the ICU. My chance of death was high, I think it was 85 per cent.’
Stacey spent four days in hospital.
‘They ran every test they known … all these blood tests and swabs and stuff. They couldn’t find what was wrong with me.’
Doctors released her, but ‘never discharged’ her.
‘They never contacted my doctor for any follow-ups or anything.’
Several months later, Stacey was working-out at the gym.
‘I ended up getting severe stabbing pains in my chest. Went to my doctor, my local GP.’
The doctor told her she was too young to have a heart condition. ‘It’s just your ribs pinching your muscles, so don’t worry about it,’ they said.
Stacey went back to see doctors ‘continuously’ over the following month.
‘The last doctor told me it was all in my head. So I kind of just learnt to live with the pain.’
Stacey was ‘in and out of hospital over 10 times’ until, after almost two years of unresolved pain, she eventually got a diagnosis – rheumatic heart disease.
Specialists ‘couldn’t explain’ how she got it.
‘The only thing they came back to was the fact that I was an Aboriginal woman and I’m more than likely to get it.’
Stacey continued to work. But about four years ago, she was having a lot of health problems and her cardiologist said ‘enough is enough’.
‘I can no longer work due to my disability … I came down to a decision where, you stop working and start living.’
Stacey applied for the Disability Support Pension, but Centrelink wouldn’t accept the report she provided ‘as medical evidence’. She’s onto her seventh case worker and ninth review.
Stacey has applied for an NDIS plan. Meanwhile her greatest support comes from a community-based health service.
‘It’s called, like, a one-stop-shop, I guess, in our lingo. So you go there and there’s many services attached to it.’
Stacey has access to a counsellor, a dietitian, a speech therapist and an Aboriginal health nurse. She’s also attending wellbeing classes.
‘They’re also there to support with letters for NDIS. So, these are all good things … having that sort of support.’
Stacey tried unsuccessfully to sue the hospital that missed her heart condition, ‘for all the wrongdoing they’ve done’.
‘I did tick the box that I was Aboriginal … Maybe I would’ve got tested for rheumatic fever.’
The lack of a ‘proper diagnosis’ has been a ‘burden of life’. She wants to help ‘put some education out there’ so there’s better prevention for children at risk.
‘Because it’s uncommon and unknown, doctors just don’t run tests for it. They don’t even consider putting it out there and educating Aboriginal people or health services on it.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.