Queensland woman Rachael Brumley is waiting to have a stroke.
It’s a strange thing to wait for. But for 38-year-old Brumley, having a stroke will mean qualifying for surgery to close the hole in her heart.
She needs that to then be able to undergo life-altering surgery for lipoedema – a disorder in which fat cells buildup abnormally, causing potentially life-threatening weight gain.
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Without a stroke, surgery is out of the question.
“I’m basically just waiting to have a stroke and hope it’s a mini one,” she said.
“I’m just getting heavier and more painful and waiting to end up in wheelchair.”
Brumley is one of a handful of people who have been impacted by changes to the Medicare Benefits Schedule (MBS).
While the changes have been praised for sending taxpayer money where it’s most needed, people such as Brumley say they’ve been left in limbo – hoping they don’t become a burden on the health system.
Waiting to end up in a wheelchair
Brumley already weighs 120kg. Diet and exercise won’t help her condition so surgery is the only answer.
Lipoedema is an inflammatory disorder – driven by hormones – that affects about 11 to 15 per cent of women, phlebologist Dr Chris Lekich, who treats women with the condition, says.
Lekich has treated girls as young as 15 and women as old as 78 for the condition, and it can be genetic, he said.
The condition is not well-known, so “it’s often misdiagnosed as obesity,” Lekich said.
“I have some patients in their 50s, 60s, that are now completely immobile and wheelchair bound. And along the way, they would’ve had 40 doctors telling them that you’ve fat and lazy and depressed,” he said.
Brumley has steadily been gaining weight since she was 18 – about two decades ago.
But her lipoedema was only diagnosed about a year ago, when a doctor noticed her symptoms.
Before then, she hadn’t heard of the condition.
“I do musical theatre. So I’ve done a lot of dancing on stage, I’ve done keto diets,” she said.
“There’s maybe 15kg above and below that I can fluctuate between, I can’t get any lower than that.
“I’ve always just thought, everyone’s right. I must be lazy. I must be eating the wrong things. I must not be doing enough.”
“(Lipoedema) is supposed to have me in a wheelchair in five years if I’m not able to get surgery to remove it,” Brumley told 7NEWS.com.au.
“It’s primarily in the legs. I have it in one of my arms as well.”
Brumley has at least 30 litres of lipoedema fat that needs to be removed.
But before that surgery, she was checked for a patent foramen ovale (PFO)- commonly known as a hole in the heart.
Lekich said checking for PFOs is a “no-brainer”.
“I want to know that when I’m operating on the legs, that fat is not going to percolate up in the bloodstream and potentially go through an abnormal heart … so patients don’t get fat that goes up to their brain.”
Brumley’s PFO is about 3-4mm in size and is considered grade 4.
But there’s one problem – a PFO closure is no longer subsidised under Medicare for asymptomatic patients.
Brumley hasn’t had a stroke, which means she’s not eligible for the surgery.
She’s been told she needs $25,000 for the surgery – which she simply does not have – private health insurance, or to have symptoms, which includes a stroke.
Brumley works as a mental health support officer twice a week but due to a chronic pain condition, she can’t work much and is on JobSeeker – which provides about $500-$600 a fortnight.
Brumley has found herself in a predicament because of changes to the MBS that were intended to modernise and improve the schedule.
The changes to the MBS came into effect last year under Scott Morrison’s government after a taskforce reviewed all subsidised procedures.
The years-long review, which ran from 2015-2020, was instigated after the government found the MBS hadn’t been reviewed since the 1980s and was overdue, Australian Patients Association CEO Stephen Mason said.
The review ended with more than 900 items on the schedule being changed.
At the time the changes came into effect last year, the Australian Medical Association said doctors and health funds weren’t given enough time to familiarise themselves with the changes.
Some patients were also left out-of-pocket because the changes hadn’t been communicated to them about surgeries they’d already had booked in.
Although the changes were “warranted”, there could be outlying cases that were left out of the new changes, Mason said.
“We believe the federal government changes were sensible,” Mason told 7NEWS.com.au.
“Unfortunately, there’s always a few hard luck stories.
“If you look at the current budget, what we’ve got to spend on health and public hospitals need more money, ambulances need more money, emergency departments are stretched, the waiting list for NICU surgery in public hospitals have never been longer.
“You’d rather the dollar went where it’s most needed and not to surgeons in private hospitals that are taking advantage of an outdated system.”
What the future looks like
For Brumley, if there’s no changes to the policy, the future looks grim.
Lipoedema makes life incredibly difficult for her.
Her arms and legs are constantly in pain. She finds it hard to walk and her weight puts strain on her legs and ankles.
“Some days they feel like they’re filled with concrete,” she said.
The condition has also taken a toll on her mental health. Sometimes she feels like she doesn’t want to exist anymore.
“I feel terrible every day and I don’t see my life getting better,” Brumley said.
“I’m just sitting here waiting for things to get worse. I can’t do anything, so I’m bored and depressed all the time.”
Brumley is “sad and furious” and has been left with no other choice than to crowdfund for financial assistance, with help from her friend Kat McGowan who set up a GoFundMe.
She also wants to raise awareness about lipoedema and the effects the changes to the MBS have had on her and may be having on others.
“I feel quite depressed by the situation. I’ve always felt so lucky to live in a country where we have free healthcare, but lately I feel abandoned by the health system,” she said.
“I know that our society judges overweight people harshly, and treats them as undeserving of decent treatment, respect or medical care, but do they hate fat women enough that they’d rather see us be a drain on the public health system and continue to suffer, rather than helping us?
“At this stage of the journey, though it feels melodramatic to say, I have no faith that I will live to regain my health and be able to return to my social work studies, and full time work.
“The future looks bleak for me, and a lot of the time I wonder if there is much point in staying around for a life with no quality.”
If you need help in a crisis, call Lifeline on 13 11 14. For further information about depression contact beyondblue on 1300224636 or talk to your GP, local health professional or someone you trust.