Isaak and Brianna

‘How could this happen to a young man who … was effectively left to rot?’

Isaak acquired a brain injury at birth, has quadriplegia, epilepsy and is nonverbal. He lives in a large group home with 40 other residents. His sister Brianna lives interstate and became his guardian in the mid-2010s.

Brianna told the Royal Commission she noticed Isaak’s leg was swollen while she was visiting him five years ago. ‘His right leg appeared to be at least twice the size of his left leg.’ Brianna spoke to a staff member and remembers saying, ‘Something is very wrong here.’ The staff member dismissed her concerns telling her it was arthritis.

When Brianna returned home she contacted the nursing coordinator to check on Isaak. The coordinator told her she was applying heat and giving him spa baths. Brianna later learnt this would have caused Isaak immense pain.

Brianna wanted a specialist opinion and asked the coordinator to arrange a consultation. However the coordinator and then the CEO ignored her. After two months Brianna made a booking for Isaak herself. She emailed the appointment details to the CEO and told him the specialist needed the most recent scan of Isaak’s leg.

A few days before the appointment, months after Brianna noticed the swelling, the GP for the group home contacted Brianna. He informed her Isaak had a tumour in his right leg and would most likely require amputation.

‘I was shocked,’ Brianna said.

The doctor arranged for Isaak to see a specialist at the hospital and told Brianna he would keep her informed of Isaak’s condition and test results.

But the doctor never contacted her again. A few weeks later in utter despair she contacted the CEO. ‘I was not being kept informed of any test results and [Isaak] is still sitting around with a massive tumour in his leg.’ She was worried there might be secondary cancers.

Eventually Isaac’s surgery was scheduled. On the way to the operating theatre Brianna mentioned the family history of bleeding to a nurse. She assumed the home had given the information to the hospital. They hadn’t.

Isaak’s surgery had to be cancelled. The hospital conducted tests and found Isaak has strains of a bleeding disorder and ‘may very well have bled to death’.

Two weeks later – six months after Brianna first noticed the swelling – Isaak’s leg was amputated. ‘I did not know if he would even survive as the doctors informed me it was a very serious surgical procedure and [Isaak]’s epilepsy was high risk.’

Brianna was concerned about Isaak’s prognosis and whether the cancer had spread. She requested copies of all test results. The CEO refused to give them to her and successfully applied to remove Brianna as Isaak’s medical guardian. He told the guardianship board there were a number of family members contacting the home regarding Isaak’s condition. He could ‘not ascertain who could be regarded as the person responsible’.

A public guardian was appointed and the CEO told Brianna, ‘I do not intend corresponding further with you.’

Brianna continued to request copies of test results and eventually received the results of a test performed five months previously. The report stated there was a possible metastatic lesion on Isaak’s liver and suggested further scans.

Brianna asked to see the follow-up scans but the CEO refused saying ‘all was clear’. She then asked the public guardian to intervene and discovered there were no scans. ‘[The CEO] lied to me.’

Isaak eventually had follow-up scans and they showed lesions in his bowels and chest.

Brianna finds it incomprehensible that the people who provided Isaak’s personal care failed to do anything about a large tumour growing on his leg.

‘This is a shocking (and very sinister) indictment on a system that was meant to care and protect my severely disabled, helpless brother. When I chose to investigate such negligence and abuse and demand answers, I was totally victimised and continue to be, to this day.’