Stuart

'There's been significant errors in care and inadequate assessment practices. [Hospitals] have also been very reluctant to acknowledge the need for carers to be present or to advocate for someone with a disability and that, I think, puts someone very much at risk.’

Stuart, late 40s, has multiple system atrophy (MSA). His automatic nervous system is progressively shutting down and he has been ‘in and out of palliative care’.

Prior to being diagnosed he worked as a medical professional.

He told the Royal Commission that he has ‘a unique understanding from being a patient and also being someone who advocated for patients’.

Stuart’s disease is complex, incurable and requires treatment from multiple specialists.

Despite having almost no understanding of MSA, hospital emergency staff don’t listen to Stuart and don’t let him see the specialist he needs to see. Although he has a neurodegenerative disease, staff often refuse to let him see a neurologist. The hospital has also blocked his attempts to move hospitals.

Staff often fail to read his medical records correctly and treat him for the wrong disease. He has been ‘triaged multiple times’ for multiple sclerosis.

‘But then you try to escalate it … it creates a scene, and I don't like scenes. And I didn't create a scene until about 25 times.’

After Stuart complained the hospital organised a meeting with ‘every doctor, every person’. They agreed it shouldn’t happen and ‘they all sign[ed] off on it’ and put it in his notes. But the next time Stuart arrived in emergency, staff didn’t read the notes.

‘They don't understand my condition … I can't even get triaged correctly. So therefore, I wait for 36 hours when I'm at a different triage level because they don't want to understand it.’

When Stuart’s temperature reaches 36 degrees he is at serious risk. Hospital staff have refused him admission because 36 degrees is a normal temperature for most people.

Medical staff have inserted medical devices in him without his consent and without proper explanation. At the start of COVID, doctors inserted a different catheter without telling him.

‘This is having major ramifications for me. I’m wetting myself, I can’t sleep, I’m in that much pain.’

Stuart contacted the doctor, telling him it was affecting his MSA. The doctor told him, ‘I don’t have to treat your MSA.’

One time, Stuart’s doctor told him he needed to admit him to hospital so a multidisciplinary team could treat him. Stuart’s doctor ‘lied’ to get Stuart to have a mental health assessment.

On admission, staff removed all Stuart’s medication and locked it away. He was there for four days until the treating team discovered he had a progressive neurological condition. He was released without medication and had to wait to access new prescriptions. At the time he was part of a clinical trial. This had to be aborted because he hadn’t taken the medication for a number of days.

When Stuart made a formal complaint, the hospital told him to contact the complaints commission. He discovered there would be a ‘three-and-a-half month wait’ to investigate his complaint. He went back to the hospital but they refused to listen. ‘At the end of it all they don't apologise, they tell me to go shove it.’

‘I personally would love to see changes to the way that complaints are managed through health ... You know, transparent communication of outcomes and timeframes for outcomes.’