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Health: `Please take me into care'

MP Lynne Jones saw her schizophrenic father tear her childhood apart. Her case is typical of the unbearable strain placed on families having to care for a person with mental illness - they need help too.

Glenda Cooper
Monday 05 October 1998 23:02 BST
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As a young child Lynne Jones would spend sleepless nights hearing jazz records being played loudly over and over, or her father swearing and hurling abuse. As she got older, he once threatened to murder her, and she was forced to leave home when his aggression became too much.

But the Labour MP for Birmingham Selly Oak sees another side to her father - the talented clarinettist, the Japanese interpreter, the man who would tell endless and fascinating stories to a young girl. The fact that his mental illness was uncontrollable was mainly due to the failure of health and social services to care for him.

But he was not the only one who was failed. Lynne, her sister and her mother were repeatedly ignored and left alone to cope with a sick man who received help only when at crisis point. Even when she asked to be taken into care, social services brusquely turned her away. Such was the stigma surrounding mental illness that she ended up feeling ashamed of her father's condition, and it was not mentioned.

She became strong, and survived. But she has decided to speak out about her family because, nearly 50 years on, there are still too many families like hers who may not survive. She is not the only one who thinks so.

Tomorrow, the Royal College of Psychiatrists is launching "Changing Minds", a five-year-campaign to combat the stigma of mental disorders. The following day, the National Schizophrenia Fellowship will introduce the Carers' Education and Support Programme (CESP), with the Sainsbury Centre for Mental Health and the backing of the Department of Health. The aim is to stop those who care for the mentally ill - often 24 hours a day, seven days a week - from becoming isolated, and eventually seeing their own health suffer because they have no one to turn to.

Lynne's father, Stanley, developed symptoms of manic schizophrenia when she was a baby. An exceptionally bright child, he had been the only one of a large working-class family to go to grammar school. He won a place at Birmingham University to read linguistics, but war intervened. Called up, he was recruited for the Intelligence Corps, was taught Japanese, and used as an interpreter.

But, after the war, mental illness started to get a grip and his life became a cycle of alternating depressive and manic states, culminating in a hospital stay every two to three years.

"In those days, in the Fifties, the treatment was electro-convulsive therapy (ECT) - it was just like One Flew Over The Cuckoo's Nest - no anaesthetic; people held down and gagged," says Lynne.

"From when I was a little girl, my father's illness was there all the time; sometimes better, sometimes worse," she remembers. "Ironically, when he was in a depressive state, although it was worse for him, it was better for us, because he would just stay in bed the whole time. When he was in a manic phase he would go drinking, and alcohol coupled with his medication would make him very aggressive - not physically violent, but verbally."

His illness would manifest itself in malicious ways. "When my sister and I were little, he would take us off for the day and my mother would have no idea where we were," she recalls. "Or he would do things like take us to the market and buy a big box of tomatoes - my mother hates tomatoes - and at that time we were very poor. All I can see is my mother's empty purse afterwards."

Her father's illness pervaded everything. "Both my sister and I had very short childhoods, because he was the real child of the family. He would constantly nag if we had pocket money to lend it to him to buy cigarettes or booze.

"My mother had to hide things from him. She could never have a holiday - if she had time off she would pretend to go to work and go and see a friend, otherwise, if she were at home, he would expect her to be waiting on him. You couldn't ignore him; he needed constant attention."

Living without any support, day after day, meant the family had to learn to deal with Stanley's ways. "You got used to his behaviour because you knew when he got manic it would be horrible, but that the next morning he would be contrite," she says. "On one occasion, he shut us all in one room and said he was going to murder us. You had to be quite calculating with him, and I just remember thinking `the best way to deal with this is to make him feel sorry for me', and so I cried and cried, and he calmed down.

"Initially, my mum bore the brunt of it but he turned more on me as I grew up. The night before my further maths A-level, I was coming home from school and my mother met me and said, `Don't go home'. We went to my grandmother's and she and my uncle were out, so we had to sit on the step until 10pm - the night before my exam. I stayed with my grandmother for three months, sleeping in the bathroom."

Leaving home to go to university, she says, was "a relief". She had to explain why she had to be put into a hall of residence at Birmingham University, rather than live at home. The family's secret had been kept well. "I went to see my headmistress because I needed a note from her. I told her what had happened at home, and especially about the night before my exam, and she was genuinely amazed. She said, `I didn't know any of this'."

Part of the problem was that, in a post-war working-class household, mental illness was not something that could be discussed. "We covered it up because of the stigma," says Lynne. "You didn't talk about it. I never used to have friends round, and it just came naturally not to mention his illness outside home, because you felt ashamed you had a father who was seen as lazy and workshy."

But when Lynne and her family had attempted to get help from social services, they had been turned away.

"I feel that the mental health services completely failed him - and completely failed us as a family. We were completely ignored. At one point, I had been so distressed that I went to social services, to the children's department, and said, `Will you take me into care?' They just told me to go home."

The two girls did have a social worker at one time, "because we were thought to be at risk", but help was ineffectual: "He bought us hula hoops for Christmas one year, and that's all I can remember." Otherwise, with the GP and the social services: "It was `out of sight, out of mind - unless you're a problem to us we're not interested'."

In the end, her mother "went to pieces" after Lynne and her sister left home, with the stress of looking after Stanley full time for so many years.

"In the mid-Seventies she had to leave and came to stay with us, because she could not cope any more - she was in danger of having a mental breakdown herself." The experience is not uncommon for many carers denied support.

Stanley was left alone in the flat for a week as the family tried to get some support for him. "We went there and he had smashed up the flat - crockery and stuff. The GP came out and did nothing. We ended up in the police station at 3am, and he was finally sectioned."

For the last 10 years of his life, Stanley was in a nursing home, where he eventually died from a heart aneurysm.

"When he died, I felt it was the best thing for him. I felt sadness at his wasted life. I can never think of him as being happy," Lynne says.

What Lynne wants - and what CESP will hopefully provide - is more support, not just for the sufferers, but for their carers. "My father could have made a real contribution to society if he, and the rest of us, had had support.

"In the end, my mother could not cope, but something like respite care would have helped tremendously. And I'm sure that, as a family, we contributed to his illness because we did not know how to act appropriately. Basic knowledge of the disease, and advice on who to contact, is invaluable.

"The day we took him to the police station, earlier he took his clarinet and played it outside the bus terminal. I just felt my heart went out to him - all that potential wasted - and I thought, `I can't do anything to help you'. And no one was there to help us to help him, either."

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