A MOUNT Gambier woman is running out of time after allegedly being declined further treatment by a Melbourne public hospital, which she says sent her home to die.
With possibly just days left to live, 38-year-old Ace Parker – who is battling Ehlers-Danlos syndrome – says she is speaking out to prevent other people from going through the same “hell”.
“If they think I am not going to fight, they are wrong. But it is a fight I am going to lose if I don’t get some help,” Ms Parker said yesterday.
Ms Parker says she can no longer eat and The Royal Melbourne Hospital declined tube feeding as an option due to cost.
“I am hoping to last to next Friday, but frankly I do not know,” the distraught resident said.
The emotionally distressed Mount Gambier resident says she has also been refused palliative care in the Victorian public health system.
“On Wednesday I made a third plea for palliative care and it was denied and I was told to see my GP,” she said.
Ms Parker has now appealed through the media for the Melbourne-based hospital to show compassion and give her options to tube feed.
“I have discussed with a gastroenterologist what I should expect through the dying process. When I stop being able to drink, I am looking at seven days,” she said.
“I can only drink a small amount at the moment, so I am looking at about seven days – there is nothing I can do.”
Ms Parker said she was bundled into a taxi and told to go home from the Melbourne hospital.
She revealed her illness was too complicated to be managed by the Mount Gambier based palliative care team.
While she had battled the rare condition all her life, she said she now faced death unless she received urgent medical intervention.
She said the condition was genetic and had affected more than one person in her family.
“I can’t be cured at this stage and I am losing the battle,” an emotional Ms Parker told The Border Watch.
“Right now, if I eat or drink by gastrointestinal tract spasms so bad, it just throws it back out. I can show you 10 hospital bands where I have been admitted for dehydration.”
Sitting in her home this week, she said there were no specialists in Mount Gambier or Adelaide who had specialist knowledge of Ehlers-Danlos syndrome.
“I found a doctor at The Royal Melbourne Hospital who has treated people with Ehlers Danlos – I felt he was my best hope,” Ms Parker said.
Ms Parker visited the specialist doctor in Melbourne on July 31 for an outpatient appointment.
She said new medication options were limited and the doctors told her she should start tube feeding.
Ms Parker said she was then admitted as a patient and the tube was fitted and the feeding began.
“I was about to start looking for some accommodation locally in Melbourne to ensure I could tolerate the feed,” she recalled.
“When I was waiting for a lady to bring a pump – which I would take home – she never showed up.
“I then found myself surrounded by medical staff, including a doctor and a number of nurses, which began to frighten me.”
Ms Parker said she was then told she could not go home with the feeding tube following a decision by the hospital’s administrators due to cost.
“I said to one of the staff `so I am going home to die’ and the doctor said `yes you are’ – this was the most distressing moment of my life.
“It was one of the moments where you are in a hell of your own,” said Ms Parker, who claimed the staff also seemed apathetic to her situation.
She said the hospital was not prepared to send shipments of the formula to her in regional South Australia and absorb other costs.
“I do admit it would add up, but it would save my life.”
But she said her condition was killing her given she could not eat and had difficulty drinking.
Ms Parker said the pain was also unbearable and morphine no longer worked.
She said would be open to using medical marijuana through the Melbourne hospital system, but this was not available.
“Otherwise, I am facing a pretty bad death – it leaves me crying on the floor due to the pain caused by the extensive damage inside.”
Ms Parker claimed local health services advised her to go to a metropolitan area due the specialist care needed.
“Sydney and Melbourne can prescribe the formula I need,” she said.
Ms Parker also claimed there was some discrimination within the health system regarding Ehlers-Danlos syndrome.
In correspondence from a dietitian, the medical professional recommended Ms Parker should trial enteral feeding and recommended her patient “urgently” be referred to a specialist.
Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues.
The hospital declined to comment due to legal reasons.
The Border Watch also attempted to contact her gastroenterologist for comment.
