Through the Maze, published in Stuff on 30 July 2017, Through the maze takes us on a journey from the opening of the first asylums in nineteenth century New Zealand to some innovative practices in the twenty-first century. It doesn’t go into any detail about what needs to happen next but the article does quote a psychologist who says we need a ‘radical revamp’.
I’ve thought long and hard about what a ‘radical revamp’ would look like, initially as a mental health commissioner and more recently in my writing.
In this Footnote, I illustrate (through Janet’s story of despair, coercion and lost life chances) the traditional mental health system that still, to a large degree, exists today.
Janet’s story, in a traditional mental health system
(from my memoir ‘Madness Made Me’)
Janet started to experience severe distress at nineteen. Her life had been difficult for years. She was sexually abused between the ages of ten to fifteen by an uncle but she hid it from her family. As a teenager Janet got into some self-harm and heavy drinking to deal with her shame and alienation. Then she started to hear voices that reinforced the bad feelings she had about herself. Janet just managed to get her school qualifications and was accepted for nursing school.
During her second year at nursing school, Janet’s voices and feelings got so bad she decided to jump off a motorway bridge. Her best friend, Emma, took her to the GP who asked her about her voices, mood, sleep, appetite, libido and concentration. Janet was having a lot of trouble with all of them and the GP said she needed to see a specialist. He put a call through to the mental health service and told Janet, ‘Sorry, they can’t see you for three weeks but please ring the mental health crisis team if you feel unsafe.’ The GP said the number was in the front of the phone book. Janet went away feeling as though there wasn’t much help out there.
The next day things got so bad that Janet rang the crisis team and told them she wanted to kill herself. ‘Make yourself a cup of tea,’ they said. She felt totally humiliated and took a big overdose instead. Just then Emma came around and rang the crisis team. They told her to ring an ambulance.
‘We’ve got another OD,’ the nurse sighed to the doctor in the emergency department.
‘That was a silly thing to do,’ the doctor muttered. He asked Janet lots of questions about the drugs she’d taken and said she needed to stay overnight.
Emma came to get her the next morning and asked the nurse if the mental health people had seen her. ‘No, you need to go through your GP,’ the nurse answered.
A few weeks later Janet ended up in the psychiatric ward after another overdose. She told the psychiatrist about her problems and her sexual abuse but he said there was no evidence that sexual abuse causes psychosis. He said, ‘Wait until the medication kicks in – you’ll feel better about things then.’ A lot of the nurses stayed in the nurses’ office and didn’t talk much to the patients.
One night Janet woke up feeling really paranoid and tapped on the window of the nurses’ office. ‘I’m under attack, I’m going to die,’ she called out. One of the nurses raised her eyes to the ceiling, put down her hand of cards, opened the window and told Janet to go back to bed.
Some of the staff were nice but they weren’t really interested in how Janet felt or how she would cope when she got out of hospital.
Janet got on with some of the other patients but they seemed like career psychiatric patients to her, which made her feel gloomy about her own future. Janet went to Occupational Therapy some mornings but she found it patronising. She slept about fifteen hours a day because the drugs made her dopey and listless. When she was up and about she felt crazy with boredom. Janet hated being locked up in the ward. Some of the experienced patients told her how to lie so she could get out of there quickly.
Two weeks later Janet was discharged with a prescription and an appointment with a psychiatrist at the community mental health centre. At the first appointment the psychiatrist asked Janet a few questions then told her she had psychosis as a result of a chemical imbalance in her brain. He said she needed the drugs like a diabetic needs insulin, wrote out a new prescription and said he’d see her in a month.
Janet had lost her place in her flat and was now living with her mother who was worried and didn’t know how to respond. Janet’s mother rang the psychiatrist to get his advice but she found him evasive and he didn’t have any practical advice for her beyond ensuring Janet took her medication.
Janet returned to nursing school after a month. The head of the school called her into her office and said she was concerned that Janet’s psychosis could interfere with her nursing career: ‘We will have to monitor you closely when you’re on placement. Your tutors will give you the information you missed out on while you were in hospital.’ Janet noticed the other students were avoiding her.
She felt helpless, as though there was nothing she could do to make things better. Everyone seemed to treat her as though she was incompetent and unreliable. She felt lonely and useless. She told the mental health team how bad she felt every month when she saw them. They said, ‘Take your medication and avoid stress.’
After a few months of struggle Janet left nursing school and went on a sickness benefit. At first she was relieved but after a while she realised she had nothing to get up for in the morning. The voices got worse and dark feelings closed in on her.
Then one morning she woke up in bright light and the voices told her she was an angel. She felt transformed, put on a see-through gown, walked into the city and blessed everyone she saw to save them from evil. It was going well until the police arrived. They yelled at Janet to freeze, threw her to the ground and handcuffed her. Her euphoria flipped into intense pain and panic. She tried to fight the police off all the way to the hospital while they mocked her for being a nutter.
The nurses put her straight into a locked cell with only a plastic mattress and a blanket. They held her down, injected her and left the room. Janet screamed to be let out but the nurse opened the flap on her door and told her to be quiet. Janet felt terrified and abandoned. After several hours she just curled up and went blank. She was in the locked room alone for several days.
When they let her out Janet said she wanted to go home but staff said she couldn’t because she was under the Mental Health Act. Janet felt frightened and powerless – drugged out and unable to leave the building. She rang a lawyer but he told her the ward was the best place for her. The psychiatrist refused to reduce her drugs when she told him how horrible they were. After two months the staff organised for Janet to go into staffed accommodation with four other people.
Janet was driven to the house and left there. She had to sign a contract agreeing that she wouldn’t drink or take drugs in the house or have sex there. She wasn’t even allowed to go to the fridge to get food between meals. Janet had nothing in common with the other residents and they really irritated her. The staff had organised a programme but Janet didn’t want to go out in the van with the others to do ten-pin bowling or eat out at Burger King. She sat around most days doing nothing and sleeping a lot.
Janet wanted to move out but whenever she mentioned this to the staff they told her she was too unwell to cope on her own. Her confidence plummeted and she couldn’t see any future for herself. Janet was also desperately lonely; the staff discouraged family visits because they sometimes upset the residents.
Janet was on a community treatment order and a compulsory three-weekly injection. The drugs really slowed her down and she felt like a zombie most of the time. Her psychiatrist refused to reduce the drugs, telling Janet she could not survive without them.
How is Janet doing today? She is now twenty-five. She is estranged from her family who don’t understand her or know how to help. She has lost most of her friends. She is on the invalid’s benefit and has not worked for five years. She sits in the living room of her staffed accommodation most days smoking, drinking coffee and watching soaps. Her weight has doubled in that time. She continues to be on a community treatment order and to get injections that sap all her vitality. Janet has no hope and sees no future. She is on her last walk into town and has just put suicide letter to her family into the postbox, before she takes the elevator to the top of the tallest building.
Janet’s tragedy could have been prevented if she had been in a more humane and responsive world where services were committed to doing what it takes to improve her life chances.
See my second Footnote tomorrow for the alternative story.