A man living at a state-run disability support service would rather risk his life than amputate his leg for fears he would not be cared for properly.
Mostyn Evans had his left leg amputated last year due to vascular disease.
Now doctors say his other leg also needs removing, but Mr Evans is refusing to let it happen.
He has made the life-endangering decision due to concerns about the quality of care he and other residents have received at Transition to Home, run by the state government at the Repat Health Precinct in Adelaide's south.
"I don't want to end up back there, I haven't received the level of care that I deserve as a basic human right," he told the ABC.
Mr Evans has been living there since February 2022.
It was opened in September to support NDIS-eligible patients, while they waited for long-term accommodation.
But Mr Evans said he and other residents had experienced a lack of timely and appropriate care, and often witnessed immobile patients soil themselves waiting for a carer to take them to the toilet.
"I don't want to lay there and crap myself if I need to go to the toilet.
"I want to be going to the toilet, but it's not going to happen there."
He said another client's catheter bag had also been left full regularly, eventually leading to a bladder infection.
Mr Evans said he had several other concerns, including medical consults held in common areas, and the administration of incorrect medication dosages.
"I was given another client's medication, and also given the wrong dose of medication when it comes to my medication," he said.
Care not timely
Mark Kinsley said he shared the same concerns. His wife Nadine, who lives with early-onset dementia, is also at the Repat facility.
He said Nadine had been in her own faeces for hours a number of times.
"It'll be on her hands, it'll be on her clothes, it'll be on the bedsheets and, and it'll be dry, so it's not as if it's just happened," he said.
"I've been there for five hours ... and the lady who was opposite Nadine, nobody checked on her in five hours.
"Sometimes she'd call out 'is anybody there?' — and I would have to go and find a staff member for her."
Mr Kinsley said until he raised concerns with staff, his once-vibrant wife was also chemically restrained with medication that should only be used in exceptional circumstances.
"She was always sleepy, couldn't get her to get out of bed," he said.
"When you did get her out of bed it was, she was up for 15 minutes [and would say] 'I'm tired, I'm going back to bed'."
He said on another occasion carers had not realised her toenails were ingrown.
"It was only recently, because she always wears socks, that the carer took her socks off, and noticed that her toenails had grown right into the bone, so she was walking really badly."
Mr Kinsley said while many carers were fantastic, some did not appear to have the training and attention to detail required to adequately care for Nadine.
"Some there are fantastic, they do everything, and then there's some that do little," he said.
Watchdog previously slammed facility
In February, the Health and Community Services Complaints Commissioner slammed Transition to Home's Hampstead campus for its care of a patient, "Mr D", who was left for "prolonged periods" … "in faeces and urine".
The commissioner's report made 12 recommendations, including assigning a clinical nurse as "health monitor" to regularly check patient wellbeing.
Human Services Minister Nat Cook said the Director of Nursing had been fulfilling that role, while the department recruited someone to the role full-time.
Having heard concerns from residents while in opposition, Ms Cook also commissioned an expert review into the facility when she took office earlier this year.
"None of these reports are what we should be hearing in a first world country with excellent, excellent health care systems."
She said she had just been handed its findings, which would be released publicly alongside a department response in mid-August.
The minister said the report's initial findings found a failure to set up an appropriate governance structure at the program's inception.
"The initial things I've seen are a failure to set up appropriate governance structure and mechanisms, acknowledging that this site has got input from health, input from the [Department of Human Services] and input from NDIS service providers," she said.
"I think that's something that will urgently need addressing in terms of making sure there are pathways for appropriate communication structure where there are policies and protocols in place that are consistent."
Care critical to patient wellbeing and broader system
The human services minister said getting people out of Transition to Care was crucial to easing pressure on the hospital system, which was already critically stretched due to the pandemic.
"On July the 22nd, there were 125 NDIS participants in our state hospitals who were ready for discharge, who no longer needed hospital care or clinical input," Ms Cook said.
"And over half of them were stuck for more than 100 days."
Ms Cook said she was committed to reducing the time residents spent at Transition to Home, and if possible, removing the need for the service completely.
"I want to see people with a discharge plan entering hospital and leaving the hospital to home. Actual home," she said.
She said currently, people were staying far too long.
"People were set to go to these places for up to 90 days on average," she said.
"The average length of stay in Transition to Home is around 200 days, I can confirm to you that some people have been there more than a year."
For Mostyn Evans, the urgency is far more personal.
Nadine Kinsley's husband, Mark, agreed.
"Having full-blown dementia where she doesn't even know who I am anymore, then for all that to happen, it's not her fault," he said.
"She shouldn't be treated the way she's been treated, none of these people should, they are human beings."
