Willow and May

‘For 20 years [my sister] was mistreated and overmedicated for a mental health condition she did not have, and not treated and under-treated for the psychosocial and physical health problems she did have.’

This, May told the Royal Commission, directly contributed to the early death of her sister, Willow, 10 years ago.

Willow was an adolescent at the time of her first contact with the state-funded mental health service in the early 1990s.

When Willow’s behaviour suddenly altered, with alarming symptoms, her family feared that something bad had happened to her. May said it seemed like she had experienced some kind of trauma she could not communicate to them. Scared for Willow and for what may have happened to her, they considered going to the police. But they decided to take her first to a specialist doctor for guidance.

The family told the doctor everything they knew and feared about Willow’s circumstances, answered the doctor’s questions, and listened respectfully to their advice. But they were left feeling ‘judged and found to be fundamentally flawed human beings responsible for the psychotic state they said [Willow] was in’.

‘We will never know now if there was trauma or humiliation or adversity or discrimination or disappointment or something else that had happened to Willow a week before.’

Willow was admitted to hospital and diagnosed with schizophrenia. Doctors gave no explanation for this diagnosis to Willow or her parents. Later, when May accessed the admission notes to try to understand the diagnosis, she did not find anything that seemed to conclusively support it.

May explained that during that first hospitalisation, Willow often seemed anxious, perplexed, uncommunicative, and would weep for no apparent reason. Willow’s medical records showed that staff suspected that she was experiencing auditory hallucination, despite Willow persistently denying it.

‘In making their diagnosis,’ says May, ‘they failed to consider adverse childhood experiences, or the context in which her symptoms emerged’.

According to Willow’s treatment sheet, she was being administered a typical antipsychotic three times a day. The daily total amounted to five or six times the maximum for an adult, even though Willow was an adolescent. At no time did hospital staff give Willow the opportunity to give informed consent about taking psychotropic medication.

When Willow was released into her mother’s care five weeks after her initial hospitalisation, she was ‘unrecognisable to those who knew and loved her’.

Willow did not like taking the medication. She explained to her sister that it left her feeling empty and ‘unable to feel joy’. But, says May, the doctors ‘were of the opinion that Willow had a lifelong degenerative condition and that her not wanting to take the medication was part of the condition’.

Shortly after, and ‘despite no evidence for … continuous use in the long-term’, the hospital changed medication from oral to intramuscular injection – to ensure medication continued to be administered.

Within 18 months serious and painful side effects had emerged, such as lockjaw and swelling in Willow’s hands. The medication continued to be administered.

Willow began to experience unusual movements of her mouth and tongue. Yet, in every encounter with a health professional the focus was always on ensuring medication continued to be administered.

For five years, Willow regularly attended a community mental health service for intramuscular injections of antipsychotic medication.

Later, May learnt that there were no records from this service.

‘That means there were no doctor’s visits, no medical reviews, no monitoring of the effect and side effects of medication, only the administration of medication.’

When the Community Treatment Order expired, medical staff didn’t tell Willow. May says they knew she would choose to discontinue the injections and ‘it was their belief that the medication was needed’.

Willow continued to attend for the injections motivated by the fear that if she didn’t the police would be sent to fetch her.

Ten years on, Willow began making unusual breath sounds, eventually diagnosed as a life-threatening condition necessitating emergency intubation on numerous occasions. Still, the psychotropic medication continued to be administered.

By the age of 39, Willow’s psychological problems were compounded by grief – both her parents had died. She had significant health issues, including hypertension and cardiovascular disease. Yet, the only treatment was the continued administration of the antipsychotic medication.

A week before her death, Willow was given information necessary to decide whether or not to discharge herself from hospital. She chose to leave, against medical advice.

On this occasion, the hospital ensured it had all the documentation in place. ‘It is quite fascinating how they overrode or adhered to their guidelines, policies, and procedures when it suited, and used them in a way to protect themselves and their processes rather than patient outcomes,’ May observed.

Throughout Willow’s ordeal, and after her death, May contacted people she thought would care and be able to help – including state and federal health ministers, the healthcare complaints commission, the clinical director at the hospital, the official visitors program, the clinical director of the community mental health service, the police, the Coroner’s Court and others. But none of it produced any meaningful assistance, resolution or justice.

‘My family and I were left devastated,’ she said.