THROUGH THE LOOKING GLASS

In the world of mental health care, Rose Cusick is a heroine. But the bureaucrats who administer 'care in the community' have threatened her with prosecution
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JAMES MALLETT'S turbulent life has earned him the full gamut of psychiatric jargon. He has been diagnosed as having a "personality disorder and marked temper discontrol"; various psychiatric reports have referred to him as being "psychopathic" and as "subnormal"; a forensic psychiatrist's report filed three years ago recommends "care, control and treatment in a well-structured community setting which can provide 24-hour supervision". This last report also states, with chilling precision, the problematic nature of Mallett's relationship with society. "At 41, it is easy to 'write off' Mr Mallett as an incorrigible nuisance to society who 'should be locked up' to guarantee the protection of society. However, with a life expectancy of another 30 years and in the spirit of care in the community for mentally impaired people, I believe he should be given a further opportunity to learn to live co-operatively in the community." Until recently, he was; but then he became caught in a web of bureaucracy so tangled that even the most restrained psychiatrist might be tempted to describe it as mad.

Mallett has a mental age of eight. He was born in Grimsby 44 years ago with a learning disability (as what used to be called "mental handicaps" are now known) and a deformed spinal column. "I went to hospital when I was eight years of age. Why? Because I been a bad boy." He was difficult, strong-willed beyond the normal irrationality of children, physically aggressive, and a pathologically light-fingered frequenter of sweet-shops. Even now, he says the words Mars Bar and Topic lovingly; then shuts his mouth in a gesture of mild defiance, closing his lips and working them over toothless gums, his head moving this way and that in a habitual gesture redolent of ill ease, rebellion and vulnerability. "I was in the kids' bit, 160 kids. It was tough, no love, nothing. Weekends stuck in a big room with a TV and locked in while the staff sat in the office so kids had to do it on the floor, they wouldn't let them out." Mallett just about learnt to read and write, slept in a dormitory with 30 others and was visited twice a month by his parents. He also ran away 170 times between the ages of eight and 11. "I wanted my mother, I was trying to get back to my mum."

When he was 13, Mallett left the children's ward he'd been in for five years and was moved to a large mental institution in Lincoln. He continued to run away, however, and as a juvenile he was regularly in court for offences such as shoplifting. (On one occasion he robbed a shop, then paid for a pounds 3.95 cafe meal with a pounds 20 note and said "Keep the change"; shortly afterwards he was arrested.) At 15, he was sent to Rampton, the notorious special hospital for the "criminally insane", where he was classified as having a "psychopathic personality disorder and subnormality". He still speaks of his time there with fear and agitation. Finally, after 11 traumatic years, he was discharged, without his parents being informed, and packed off to a Salvation Army hostel. He had lost track of time - he thought he'd been at Rampton eight years - and had no idea of how to fend for himself. So he drifted out of control into violence, burglary and vagrancy and was in and out of court - the whole catalogue of disaster awaiting the crazed, the vulnerable, the inadequate in a frightened and frightening "community".

He slept rough, fended for himself, drifted from wasteland to rough hostels to park benches. And then, in 1985, Mallett struck up a relationship with a woman with a baby whom he met in a bed and breakfast hotel. Mallett offers few details about her. "She can't read or write or count money." None the less, his life took a turn for the better, and with the help of social workers who were looking after the woman (who like Mallett is learning disabled), they married, and set up home in a council flat in Scunthorpe. Wedding snaps reveal the bride to be a pretty, willowy woman several inches taller than the groom. Things didn't work out. Mallett lost his temper with her because he didn't approve of the way she looked after her son. Mallett became violent towards her. "The second time I thought I had killed her because she fell down and didn't move for half an hour. I hit her with the rolling-pin. I dug a hole in the back garden because I thought she was dead. She went out at 6pm and came home at 10.10pm. I said, 'Where have you been?' and she said at this woman's house, I said, 'Keep away from her - what have I told you?' But she didn't, and this woman used to take her money."

In the autumn of 1987 his wife left, unable to cope with Mallett's constant violence, taking her son with her. "I went to pieces," says Mallett. "I lived near some flats and I set fire to them because all of them that lived there were calling me Quasimodo and Thicky, and they called my wife spastic - all the names under the sun. One day I shouted back at them, 'You'll go up in flames one day.' " Not long afterwards, Mallett made a Molotov cocktail and put it under the staircase leading to the flats. Panicked by the ensuing blaze, he threw a wet towel over his head and raced along the balconies banging on the doors and warning everyone. There were no injuries, but the damage was extensive, and Mallett served six months in Lincoln jail. When he got out he returned to his vagrant ways, sleeping rough, stealing food when he was hungry - and medicine when ill.

In 1989 he saw his mother for the last time. "I hit my mum once," he admits, with difficulty and remorse. "My mind went blank. I thought she was a bloke." In fact, he seems to have terrorised his mother from an early age. He would lash out when he didn't get his way, and the violence and aggression continued as he grew older. During one prison sentence he wrote to her threatening to burn her house down. She was terrified and now keeps both her telephone number and her address secret from him. He still has a photograph of her, a Fifties snapshot of her laughing as she looks out of a car window.

By 1991, Mallett's frame of mind was ragged and dangerous. He committed arson again, this time burning down a child guidance centre. There followed a three-and-a-half-year sentence during which Mallett was moved from one jail to another, partly as a result of his one-man campaign to stop drugs circulating in the prisons. " 'Don't start on drugs,' I told them. 'In the end it'll kill you.' "

Yet, despite appearances, Mallett's life had begun - unknown to him - to take a turn for the better. While he was on remand, the probation services, thinking that he should be in residential care, had asked for him to be assessed by a Yorkshirewoman called Rose Cusick.

ROSE CUSICK is a maverick, not afraid to take on the authorities or to live on a knife-edge. In her forties, she is something of a heroine in the world of mental health care. A mental health nurse of some 20 years standing (originally in state hospitals, now running her own homes), she has a gift with the kind of difficult, vulnerable and dangerous people that most of us would prefer to ignore or forget. She is 4ft 10in tall, weighs 6st 7lb and, with long raven hair, a sunbed tan and a wisp of a flowery dress, hardly looks substantial enough to calm the tortured and aggressive souls of people like James Mallett. She used to get scared, she says, recalling a 7ft-tall, unpredictable and dangerous resident who went for her with a knife. "But on the advice of a psychiatrist I soon worked out that if you can shout stronger and louder than whatever causes their distress, than the voices that excite them to fury, it works." With her husband, John, Cusick runs three community care homes for people with learning disabilities and mental illness, two in York and one in Filey, near Scarborough. In all, they cater for 29 residents, or "clients". Their son Mark is in charge of one of the homes, and there are a further 13 staff. Funding comes from the social services, which pay approximately pounds 236 a week for each resident.

When Cusick first met Mallett, in 1991, she assessed him as mentally handicapped with behavioural problems and said that she could cope with him. A report from Grimsby Health Authority contradicted her. "I do not believe that there is any specific treatment available that would modify his personality or behaviour patterns at this stage and would not support his disposal to an establishment such as Wentworth Road [one of Cusick's homes in York]," wrote Christina Tyrie, the consultant psychiatrist who compiled the report. Tyrie recommended that Mallett go to a supervised social services hostel. Instead, he was sent to a hostel with very limited supervision (someone came in for an hour a day); within two weeks he had attempted to strangle a fellow resident. His parole was revoked and he went back to jail. But Cusick kept in touch with him. When he was finally released, in 1994, it was to "No Fixed Abode": he was back on the streets. Cusick found him and, with the agreement of Humberside Social Services, took him into Wentworth Road. (She then started arguing for funding, which eventually came through.)

It was not an easy time, but in due course Cusick's efforts bore fruit. "When James got out of jail he was far worse than when he went in. He was like a wild dog out of a kennel, like a caged animal. He didn't sleep, he threatened people, he was very demanding, he argued about everything, he was very volatile and threatened everyone with a knife - they were all terrified. I planted him one," says Cusick, and Mallett looks at her appreciatively. "He tried to fight, but I shouted so loud and frightened him to death." "She did it to calm me down," says Mallett fondly, "and because she didn't want me to go back to prison."

Today, after 15 months with Cusick, Mallett seems calm, although there are still outbursts of temper. How has she done it? "I used very strict behaviour modification. In other places he would make demands with menaces - give me your cigarettes or else - and people would give in. When he did that with me I removed the cigarettes and taught him to control the temper. It worked. Out there - in B & B, in jail - he would deteriorate. But here he's within a controlled, affectionate setting. There are definite borderlines and controls. Remove those and he'd be threatening again." "I wouldn't last," agrees Mallett. "I'd be back on the streets."

He is not totally reformed. He still doesn't like people disagreeing with him, he says. What does he do if someone disagrees with him? "I just argue and argue until I'm right," he says. None the less, it seems clear that he has been transformed from a wild, dangerous individual into a human being who is both charming and capable of greater independence than at any time in his life. If he were once again roaming the streets, he would almost certainly pose a danger to society. He isn't, and one might expect society to be grateful.

BUT SOCIETY hasn't been grateful. In fact, such is the perversity of today's mental health bureaucracy, greatly exacerbated by the Care in the Community Act of 1993, that Rose Cusick's only reward for her efforts with Mallett and others like him has been the threat of prosecution and bankruptcy. For those who work in "care in the community", the story has a familiar ring: a highly motivated worker caught in a web of bureaucratic complications and legal restrictions that seem to take no account of the fact that "care in the community" involves real people who desperately need real help. To an outsider, it sounds more like insanity.

Until last August, Cusick was within the rules. With 12 years' experience of running her own homes and eight years as a nurse in state mental hospitals before that, she was clearly expert in caring both for difficult "learning disabled" people and for mentally ill people. The North Yorkshire County Council Social Serv-ices Department approved, and provided funding for each client. More importantly, they provided registration - without which it is illegal to run a care home.

Then the complications began. Wentworth Road, the 20-bed unit in York, had "dual registration", allowing Cusick to provide residential care there both for the learning disabled and for the mentally ill. The Coach House, the smallest of her three homes (also in York), provided only day-care and thus did not need registration. Then came a series of crises. Two emergency cases - one literally standing on the pavement outside jail with nowhere to go, the other having been moved seven times in six months and also with nowhere to go - had to be moved into Wentworth Road, so Cusick moved two existing clients, Jason and Steven, to the Coach House. At the same time, James Mallett, who had arrived at Wentworth Road five months earlier, ran amok with a carving knife and had to be moved out, so Cusick put him in the Coach House as well. "It sounds complicated," she says, "but it was just a matter of juggling numbers so nobody was turned away."

The smaller setting of the Coach House also offered great advantages in terms of providing stricter supervision, and Cusick set about transforming it into what it is today: a residential home for three people with 24- hour cover from qualified staff, a strict but humane regime involving strong personal relationships, and an accent on independence that encourages the three clients to cook, shop and learn to budget. Since all three residents had already been found eligible for residential care and funding at Wentworth Road, Cusick assumed that there would be no problem in securing the necessary "dual registration" for the Coach House as well. She was wrong. Funding for the three residents of the Coach House has been stopped, and for the past year she has had to pay for them out of her own pocket. More worryingly, she has been facing the threat of prosecution because she is in breach of regulations.

It wasn't that the Coach House itself was deemed unsuitable. It was a question of definitions. Since Wentworth Road was registered, official thinking has changed, and the current view is that the mentally ill and the learning disabled have different needs. In the words of North Yorkshire Social Services director Ken Foote, "It has not been policy to grant... dual category registration for some years now." The upshot was that North Yorkshire Social Services threatened to prosecute her unless she closed the Coach House. Cusick was having none of it; she was convinced that her three clients would have nowhere to go. "They would have ended up in jail. It's not that they are criminals, but they have criminal records and tendencies because of their particular handicaps and vulnerabilities, and jail is no place for them."

In February this year, after months of wrangling and argument, she was told the threat of prosecution was being dropped and the Coach House was granted registration - but for learning disability only. She turned it down. "Were I to accept the category offered to me, my clients would immediately be under threat. They would all have to be reassessed, and my fear is that they won't fit that category. I've worked in community care for 12 years and before that I worked in psychiatric hospitals, and only two or three of the hundreds I've seen have fitted neatly into one or other category."

Cusick was thus in an impossible position. Accept the registration, and the Coach House's three clients would all have to be reassessed - and, she was advised, would probably not qualify for funding for residential care (Mallett would probably be defined as mentally ill, the other two as having "mild" learning disabilities). Refuse the registration, on the other hand, and their funding would be cut off anyway, since she would be in breach of the regulations by running an unregistered home.

Such paradoxes are a regular occurrence in the world of care in the community. "Mental health in community care is a grey area in terms of definition," says Graeme Sandell, Head of Mental Health at the National Association for the Care and Resettlement of Offenders. "In the end it's down to both clinicians and bureaucrats to decide on how to label people - labels determined with a weather eye on time and funding, both of which are scarce resources. The net effect is that some people are not getting access to the care in the community which they need."

Brian McGinnis, special adviser with MENCAP, comments: "Care in the community is about caring for individuals and not categories. The reality is that people are identified by one particular label but quite often have or acquire different ones. People with learning disability can also be mentally ill, our labels fall short of the reality. You can throw away people and keep the labels, but in a really good service you throw away the labels and keep the people."

Cusick adds: "Christopher Clunis [the schiz-ophrenic who murdered Jonathan Zito in 1992] had been through every conceivable label until he was finally labelled schizophrenic. My clients criss-cross the boundaries. Basically nobody wants them - or the responsibility of funding them." Faced with a choice between breaking the law or risking her clients ending up on the street, Cusick chose to break the law. The Coach House is still unregistered.

APART FROM James Mallett, Cusick's battle with authority has involved three other "clients". Steven, the oldest, is 33 but seems more like 16. He is extremely nervous; his hands tremble and he stammers. Born with a learning disability and, by his own account, unable to come to terms with his parents' decision to send him to a special boarding-school for his own benefit, he has had a history of aggression, disorder and distress beyond that which society can accept. He has physically threatened his mother more than once and set fire to his parents' house. He has lived in care homes and psychiatric hospitals for most of his life, with a brief and unsuccessful episode in bed and breakfast accommodation. Steven is not violent to others, but his behaviour is alarming - he has been known, for example, to run amok in the street with a blood-soaked knife claiming falsely that he has killed someone. The blood was his own. Steven has attempted suicide but says that in the seven years he has been with Cusick he has learnt a lot: "All sorts, how to fend for myself, self-catering, budgeting, reading and writing." If reassessed today, Cusick fears, he would be diagnosed as mild learning disabled and would not qualify for residential care. As it is, his funding has been cut off anyway (because the Coach House is unregistered).

Jason, the other client who was moved from Wentworth Road to the Coach House last August, is a 22-year-old whose movements are so self-effacing as to suggest that he wants to airbrush himself out of others' perceptions. Diagnosed by the probation services as borderline educationally subnormal with behavioural difficulties, Jason is withdrawn, his voice barely rising above a whisper. If he wasn't in the Coach House, he says, he'd be on the streets. "Because of the criminal offence I did, I have nowhere to go. I had aggressive behaviour and very bad temper and a mild learning disability."

"He was a thug when he came to me four years ago," says Cusick, "full of bravado, the big hard man." Cusick worked hard with Jason and has encouraged him to take a work placement locally. But his learning disability means that he is easily led, and in the past he has got into bad company. Cusick fears that if she accepted the new registration the local authority has offered to the Coach House, Jason wouldn't qualify for care there, in which case it would only be a matter of time before he was convicted again. "He'd end up spending his life in a psychiatric hospital."

And then there is Jayne Shaw, a pale 18-year-old who discharged herself from a local psychiatric hospital two-and-a-half months ago and has been staying at Cusick's own home in Filey, too frightened to leave her. Jayne has a history of violence that would lead many to write her off, but to Cusick she is a damaged kid who needs help. When she was 15, Jayne was found "wandering down the main street of my mum's village carrying a carving knife". The following year she attacked her father and step-mother's house, smashing their windows with stones from a rockery and attacking her father with a knife. ("He always said that rockery was a bad idea," says Jayne.) She has also been in trouble for shoplifting, breaking a care worker's wrist, stabbing a policeman in the finger, and setting her B & B bed on fire. The courts sent her to Salters, a secure unit in Peterborough where at last Jayne found the care and therapy she needed. But then, at the end of last year, her prescribed time there drew to a close, and no subsequent placement had been found for her.

Staff at Salters were concerned that Jayne would end up back on the streets. They wrote to the Department of Health saying, "Any chance of a successful rehabilitation for Jayne will need a high level of support and therefore funding. Requests for Jayne have been negatively received due to lack of resources and prioritisation." But Jayne was not deemed psychiatrically ill and therefore was not the responsibility of the Department of Health. Then, just before Christmas, with days to go before Jayne's time at Salters was up, the probation service contacted Cusick - they could find nowhere else for Jayne to go. Cusick went to Salters, spoke to staff there and sifted through mounds of paperwork. A visit to York was arranged for Jayne. And then Jayne became caught up in the toils of the welfare state. There was a delay over the assessment that should have been done before her release, and without that assessment no funding could come through. Jayne, too, was heading for No Fixed Abode. Cusick broke her own rules and took Jayne into her own home - at her own expense. "I provided B & B in my own house or Jayne stayed with my assistant when I was working nights and in bed and breakfast when we were both at work. It's not against the law to provide B & B yourself - as long as it's not for more than 28 days a year."

Although Jayne had help, this was a difficult time. After five weeks the assessment had still not been done. Jayne feared her stay at Cusick's was under threat, ran away, and slashed her wrists. This time she was taken to a locked ward in a psychiatric hospital. "There were acutely mentally ill people there," she says. "I stayed there two-and-a-half months but I couldn't stand it." Jayne discharged herself and was found by police, who, unwilling to turn her on to the streets, took her to Cusick.

Since then, Cusick has tried to find Jayne a place on an open ward; hospital psychiatrists have refused, insisting on a closed ward. And so Jayne has remained with Cusick - putting her, once again, on the wrong side of the law.

At the beginning of April, Jayne was arrested for being in breach of her probation order and taken to the hospital wing of Lower Newton jail in Durham on a 28-day custody order; on her release she still had nowhere to go, and so she returned to Cusick. "It seems as if they're waiting for me to offend, just willing me to do something," Jayne told me, "because then they could all wash their hands of me as I'd go to prison."

CUSICK DOESN'T court conflict, but her commitment to her clients' well- being seems destined to keep her in more or less continuous conflict with authority. And, sadly, in the long run it is usually authority that comes out on top in such conflicts. Two weeks ago, brought to the verge of bankruptcy by the lack of funding for her clients at the Coach House and for Jayne Shaw, Cusick was forced to give in. At the time of writing, Jayne and Jason are in B & B accommodation, James is temporarily back in Wentworth Road, and only Steven remains, for now, at the Coach House - at Cusick's expense.

But Cusick has not given up hope, and there are powerful voices being raised in her defence. "I have written umpteen letters to the Health Minister John Bowis about such issues," says John Greenway, Cusick's Conservative MP, "and I think he's trying his best to co-ordinate, but decisions are taken by local social services departments and he's a prisoner of his own officials. I back the Cusicks. I want them registered and able to carry on with their work.

"They've had brushes with authority," Greenway adds, "but without question the accolades their work has been given by the courts speak for themselves."

Another important ally is Tom Foxen, Con-sultant Psychologist with the Wigan and Leigh NHS Trust. While having no quarrel with the need to assess clients and register the homes set up for them, he maintains: "The type of clients Rose works with frequently meet the criteria for more than one category, and I don't know of any statutory facility which addresses this mixed client group. If such a client gets referred to existing facilities they are likely to encounter a long waiting list, or be assessed as untreatable or not needing secure provision and discharged. There is very little provision for this type of client outside prison or hospital."

Except, that is, for Rose Cusick. As Foxen says: "Rose is trying to meet the unmet needs of this client group. I regard her as an expert in the care and management of this type of client, and a way needs to be found to change legislation so her important work can continue." 8

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