Can the ACT Election Ease The Suffering Of Endometriosis Patients?
- Rania Yallop
- Oct 8, 2020
- 7 min read
Updated: Sep 20, 2021
The final years of high school are challenging for everyone, but Mikayla Ahkin experienced a whole new level of difficulty by searching for an endometriosis diagnosis while trying to finish year 12.
Now 22, Mikayla missed out on experiencing significant parts of her education because of endometriosis. “In college, you have more of that freedom and there's less of a structure. If it was really bad I wouldn't go to classes at all that day. Even being in class and having teachers who would understand, it would still get to the point that I couldn't leave class when I needed to, so I just stopped attending. I ended up moving colleges. Then I had the surgery so I was out for eight weeks anyway towards the end of the year, so I never ended up being able to go to my graduation or anything like that.”
First contacting doctors about her debilitating pain at 17, it took over a year for Mikayla to receive a diagnosis. “I went to three doctors before I found one that would refer me to get the surgery, I’m really glad that my mum pushed that. They just kept telling me that I’d grow out of it, that I was just being overly dramatic and that it would get better with time as I got older.”
Affecting 1 in 18 Australians, endometriosis occurs when endometrial tissue, usually found in the uterus, grows elsewhere within the abdomen. Often found in and around the fallopian tubes, pelvic tissue and ovaries the condition can seriously impact patients’ quality of life. Symptoms include painful, irregular periods and infertility, but left untreated the condition can lead to serious health complications as scar tissue sticks organs together within the abdomen.
The condition is incurable, with expensive surgeries, medication and medical imaging required for diagnosis and treatment. Common treatments include hormonal medications such as contraceptive pills and pain management medications, with many patients requiring frequent surgeries to manage the condition.
Endometriosis awareness has increased in recent years, with celebrities including Emma Watkins, best known for her role as the Yellow Wiggle, publicly opening up about their experience with the disorder. In May this year, the Federal Government announced a $9.5 million endometriosis research funding boost, providing funding for five research projects aimed at better understanding the condition to improve treatment options across Australia.
For people with additional medical issues, treatment options can be even more limited. Mikayla suffers from chronic migraines, stopping her from accessing some of the cheaper, more common treatments. “They put me on the pill to completely suppress my cycle, and that didn't work because I have a history of migraines, and you're not meant to be on the pill with migraines. It made them a lot worse, and they told me I could deal with it or deal with the pain.”
Now operating a guitar tutoring business, Mikayla considers herself lucky that she has found work that is more flexible around her condition. “I’m lucky with my work that if it is a really bad day I can cancel my lessons, but when I was working a normal job I was having to call in sick and get doctors’ certificates. Sometimes it was days, weeks off work.”
To manage her endometriosis, Mikayla visits her doctor monthly, requiring blood tests and new prescriptions to ensure her medications aren't causing further harm to her body. “Really at the moment, all I can do is deal with it.”
How Canberra’s Health System Is Failing
The lead up to October’s election was dominated by conversations about Canberra’s failing health system. With one of the longest average wait times for elective surgery in the nation, Canberra Liberals candidate Alistair Coe campaigned on fixing the issues that only seem to have worsened in recent years, saying “The Canberra Liberals are going to declare war on elective surgery wait times.”
The COVID-19 pandemic only exacerbated the issues in Canberra’s health system. In the January to March quarter this year 889 elective surgeries were overdue, which increased by 48.1% to 1,317, following the decision by the National Cabinet to postpone elective surgeries Australia wide.
Beyond her initial diagnosis, Mikayla has experienced the failings of Canberra’s public health system first hand, once waiting 18 hours in the emergency department to receive a blood transfusion.
On another occasion, when presenting to the emergency department with a ruptured appendix, Mikayla was told to go home by medical staff, waiting four days before receiving the surgery she required. After battling to receive the treatment she needed, doctors found that her endometriosis had progressed from stage one to stage two. The initial hour long keyhole surgery she had gone in for became a six hour open surgery, as 30% of her stomach muscle was required to be cut away from her abdominal wall before they could perform the appendectomy. “They don't listen to people or take them as seriously as they should.”
Receiving inadequate treatment in Canberra’s public emergency departments is a common issue. Ranked amongst some of the worst emergency departments in Australia, The ACT has fallen behind the rest of the country in emergency wait times, with less than 50% of patients being treated within the recommended time frame. Following a 2019 report, Health Minister Rachel Stephen-Smith admitted that emergency department wait times "continued to be a challenge" for Canberra hospitals, but almost a year later little improvement has been made.
The Australian Medical Association says that a lack of funding is at the core of ACT Health’s issues, with their annual 2020 Public Hospital Report Card report outlining how the public hospital system continues to fail Canberrans. President of the Australian Medical Association in the ACT, Dr Antonio Di Dio said that “The ACT public hospital system remains under significant pressure with every indicator showing the Territory is lagging behind the national average. To compound the situation, many of the indicators also show that the gap is widening.”
Canberra resident Jennifer Palmeri believes the failures of Canberra’s health system are more complicated than just funding. After seeking treatment from her doctor, and presenting to Calvary Hospital’s emergency department with acute pain, only to be sent home with ibuprofen, she eventually managed to progress towards a diagnosis. “The pain was to the point that I was unable to walk, and screaming and vomiting in pain. I finally said I want to see a specialist.”
From first seeing a specialist, it still took Jennifer over three years to receive a diagnosis for endometriosis. After being treated with Depo Provera injection that worsened her pre-existing medical conditions, Jennifer now has to look to Sydney for specialised treatment options. “It's at a point where I need to go further, and unfortunately that specialist care just isn't in Canberra.”
The Canberra Liberals promised to halve elective surgery wait times. Allocating $125 million more than ACT Labor had proposed, Canberra Hospital would see an additional 27 new operating theaters to perform 70,000 elective surgeries in the next four years - 10,000 more than ACT Labor has targeted.
To further increase capacity, Shadow Health Minister Vicki Dunne proposed operating hours be extended. "There is nothing to stop us operating a twilight list as well, especially when you're doing day procedures, or even a weekend list."
To lessen the financial burden of medical care in Canberra, Canberra Liberals leader Alistair Coe promised the creation of a business assistance program to further integrate private General Practice clinics with the public health system. The plan, which is projected to save Canberra families around $200 a year, would further benefit those with chronic health conditions requiring consistent assistance from doctors.
Mikayla Ahkain would welcome the Canberra Liberals business assistance program, as the decrease in GP costs would decrease the financial pressure for people with endometriosis. Before finding a bulk billing doctor, there was a significant financial strain from constant doctors appointments on top of cost of other treatments. “If you're going in for a doctor's certificate or a prescription it’s absolutely ridiculous to be expected to pay that every single time. Especially if you have this condition and you're needing to go in once a week or more.”
Under a Liberal government, 400 new health staff would be hired to facilitate the increase in capacity.
The Canberra Liberals promised more financing for health in the ACT leading up to the Territory election, but the elected ACT Labor government has also promised substantial upgrades to the system.
Commencing next year, the Canberra Hospital is receiving a $500 million upgrade, including 22 new operating theatres and 148 inpatient beds. To further increase elective surgery capacity in Canberra, ACT Labor has promised the creation of a $21 million Elective Surgery Centre based at the newly completed University of Canberra Hospital. Designed to reduce the burden on Canberra and Calvary hospitals, the facility will provide day surgery procedures, including those required to treat endometriosis.
ACT Labor has also proposed a $16 million upgrade to endoscopy facilities at the Canberra Hospital, delivering an additional 5,000 endoscopy procedures annually from 2023 onwards.
Minister for Health Rachel Stephen-Smith criticised the Canberra Liberals policy, deeming them unfeasible due to requiring more resources than they had allocated. "They've committed to the exact same increase in health staff as we have and, somehow, magically, they're going to do an additional 10,000 elective surgeries."
After receiving inadequate treatment, Jennifer Palmeri holds significant frustration towards Canberra’s public health system. “It’s not just chronic pain, it starts with the fact that the hospitals don't care.” To improve care for endometriosis patients in Canberra, she believes that there needs to be a change within the culture of ACT health. “The ACT government needs to look at why people are being turned away, and changing the culture in the hospitals. They’re not even investigating it, that's what's causing the problems in the system. That's what's causing the system to be broken.”
To adequately treat patients with endometriosis in Canberra, funding serious upgrades to facilities is necessary, but upgrades to the way doctors and nurses treat people presenting with pain need to be made as well. Despite Canberra having some of the worst waiting times for emergency departments and elective surgeries across the nation, stories like Mikayla’s and Jennifer's are mirrored by most endometriosis patients nationwide. The next term in government for ACT Labor will be critical to ensure medical care for Canberrans can reach the nation’s standard.
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