Lincoln and Neci

‘Who is going to speak up for him and rescue him from this atrocious mental state of mere existence?’

When Lincoln was in his 20s he was diagnosed with schizophrenia.

His mother Neci told the Royal Commission that Lincoln trialled several medications before finding Clozapine was the most compatible for him. He took it ‘religiously every night’.

For the next 10 years Lincoln led an active and fulfilling life. ‘He had many friends, he was bike riding, he had a car, he had a part-time job [and] he was involved with the church,’ Neci told us.

However Lincoln felt the medication made him feel ‘sedated and sluggish’, and he repeatedly asked his doctors to reduce the dosage.

Eventually doctors at the local hospital decided to wean Lincoln off the medication and then decided he ‘could come off it altogether’.

‘This was a big mistake,’ Neci said.

After Lincoln took the last tablet he had a psychotic episode and was involuntarily admitted to a psychiatric hospital.

The hospital doctor gave Lincoln new medication but there was very little improvement. Neci asked the doctor if Lincoln go back to Clozapine again but the doctor ‘took no notice’ and instead increased the dosage of the new medication.

This was when everything changed.

‘His mood deteriorated, he became withdrawn, he was hardened, his emotions blunted and he was rebellious in his speech.’

At this point Lincoln was in his early thirties.

Lincoln refused to move back home with Neci, so a social worker had to quickly find a housing commission unit for him. Since then, he’s lived on his own ‘cut off from family and friends’.

‘I lost my son,’ Neci said.

Neci remains very concerned about Lincoln’s physical and mental health, but because he refuses to give consent, no-one will discuss his case with her.

The only thing she was told was Lincoln was being treated with a monthly injection of the new medication at the community mental health centre.

In Neci’s opinion this is wrong. While she respects Lincoln is an adult, she says ‘he does not have the mental capacity to be in control of his health while on … [the new medication]’.

She spoke to her GP who told her the medication will only stabilise Lincoln’s condition. Neci believes this is nothing more than ‘a chemical restraint’.

‘The medication has taken over [his] mind in the worst possible way.’

Recently, Neci visited Lincoln to see for herself how he was doing. ‘I was appalled, devastated and heartbroken to discover the way he is,’ she said.

She researched the medication on the internet and discovered it ‘can have extreme and dangerous side effects’.

‘In America over two thousand lawsuits have been filed against the pharmaceutical companies responsible for the manufacture of [the medication] for the damage it has caused,’ Neci said. She wants to know if ‘this drug has been investigated for its safety for use in Australia’.

She said unless Lincoln gradually stops taking the medication, he will have no quality of life. But for this to happen, she believes there needs to be a change to the Privacy Act 1988.

Lincoln is an adult living in the community who is not a danger to himself or anyone else. As such, Neci said, ‘the law states my son is free to choose how his health is managed … the Privacy Act prevents me (his mother) from having any input with the psychiatrists’.

In Neci’s opinion, in certain cases, people with schizophrenia should be excluded from the Privacy Act.

‘I have no desire to be in control of [Lincoln]’s mental health. I only want him to live his life as functional as he is able, which is not happening now.’