He ain't heavy, he's my father

3rd March 1995 at 00:00
Children who look after mentally ill parents often sidestep their own needs. As a Bill highlighting their plight nears its second reading, Wendy Wallace asks how much of the burden of care in the community falls on these youngsters' shoulders.

In an upstairs room in a dank YMCA in south Wales, a small group of young people are playing Trivial Pursuits and chatting. Gathered shoulder to shoulder around the table, they give every appearance of being delighted to be there. This exclusive youth club is for children from the Rhymney Valley, Mid Glamorgan, who have parents with mental illness. Children from a 10-mile radius up and down the valley attend for up to two hours on Wednesday afternoons for a break from home life - and a chance to talk to each other and youth workers.

Michelle's mother has agoraphobia. "She doesn't like going anywhere, or being on her own," says 13-year-old Michelle, whose parents are separated. "So I hardly go out now. At the moment, she's down the house. If she gets panicky, I know my Dad's in, in the flat upstairs." Michelle and her younger sister are used to looking after both themselves and their mother. Ingrid, 9, vacuums, cleans the bath, makes her own breakfast and gets herself to school. She runs errands to the shops in the daytime, Michelle goes if it's after dark.

Last time the girls' mother had a panic attack, Michelle stayed in a car for two hours with her until an aunt arrived and helped get her into the house. Both children make light of what they do, and Michelle says proudly that it's nice to see her mother going out occasionally now.

Other children in the group have other problems with their parents.

One bright girl failed all her GCSEs after they coincided with a bad spell for her schizophrenic father. He used to follow her to school and stand outside classroom windows, grimacing and gesticulating.

Most of this group, in the small communities of the valley, have suffered teasing and bullying about their parents, some of it extreme. One girl had her legs whipped with branches of holly. Thirteen-year-old Robert has never had anyone home from his secondary school, in case the class bully gets to hear about his schizophrenic mother. Alan, aged 14, is moving to another school because the bullying has been so intense at the current one. "I know it's because he looks after his Mum," says Zed Piekarski of the local mental health team.

At the club, children spend most of the time on ordinary youth club activities such as badminton and table tennis. Part of the purpose is to give them a taste of "normal" teenage life. But a child counsellor and community psychiatric nurse are on hand if children want to talk about particular problems.

Malcolm Evans, manager of the YMCA and a child counsellor, says most of the young people live with multiple stresses. "It's being able to cope with a parent who isn't performing in a parent's role," he says. "A significant number are coping alone - the stress of the mental illness tends to break up the family.

"They don't share with close friends in the same way that others would, because they're afraid of the backlash. They can be very demanding here, compensating for what they haven't received in the home. The group is very accepting of tantrums and outbursts, because it happens to all of them from time to time."

The Community Care Act has freed many adults with mental illness from a life of grim institutionalisation. And many children who would previously have entered the care system now remain with their families. But how much of the burden of care in the community is falling on the shoulders of children?

Professionals in the field agree that inevitably children get involved in helping parents at home. In the 18 months since its inception, the Mid Glamorgan club has had 45 local young people referred by other agencies.

"We've opened Pandora's box," says Malcolm Evans. "The more involved we get, the greater the numbers and the broader the needs. We haven't even dared open the door to young people who are supporting adults with physical disabilities. "

Young carers often bypass their own childhood in order to look after an ailing parent or keep a family together. The pressures of either physical care - washing, dressing and feeding - or emotional support can mean the child is unable to make friendships or attend school regularly.

Some who do go to school are isolated by their premature responsibilities, and prefer to discuss the price of food and electricity with teachers at break-time, rather than mingle with their peers, according to Sylvia Heal, young carers' officer at the Carers National Association. Young carers have been described as "permanently worried" children, with the pressures on those looking after mentally distressed parents often particularly acute.

Now they may be in line for increased help, if Labour MP Malcolm Wicks succeeds in getting a Private Member's Bill through Parliament. This week sees the second reading of his Carers (Recognition and Support) Bill. The Bill, which has all-party support, would give carers (including those under 18) the right to assessment of their needs under the Community Care Act.

Currently, the Act does not recognise carers under 18. They are entitled to support services under the Children Act, but first have to be recognised as "children in need". As things stand, many are not.

"The great problem with young carers is that there's no clarity about whether they get services under the Children Act or the NHS and Community Care Act," says Diane Gaston of the Carers National Association. "So they can get squeezed out. Young carers need to be explicitly named and recognised."

The kind of support children need, according to the association, is defined primarily by its flexibility. It might be a home help coming in the morning before the child goes to school; it could be respite care over an exam period, or meals on wheels so that a child doesn't have to come home from school at midday.

For young people looking after a mentally ill parent, the needs may be different. "The most difficult aspect is sudden decline or relapse into mental illness, which can be frightening or paralysing for a child," says Anthony Douglas, assistant director of the children and families department of the London borough of Hackney.

"These children need in-touch support such as a telephone, a named contact in the family resource team and a personal service. Our emphasis is on identifying and keeping in touch so we can be there when things deteriorate."

Over the past few years, researchers into young carers have consistently pointed out that one of the main obstacles to helping them is their invisibility. Helen Byrne works with a young carers project in Nottingham.

One of her clients is a girl of six. "Her mother has a physical disability which limits her mobility," says Helen Byrne. "The little girl's only been to school probably three times since Christmas - because she can't get herself there, her mother can't walk that far and no alternative arrangements have been made." The school has only recently discovered the cause of the child's non-attendance; she had previously been seen as a truant.

Children themselves may not realise that the term "young carer" applies to them, says Helen Byrne. "They often don't see themselves as carers at all. They're just children who help Mum or Dad or whoever, and often that's how it's always been in their family."

Adults may choose not to declare the amount of help a child is providing. And the stigma attached to both mental illness and physical disability, combined with the fear that children will be taken into care, mean that many families prefer to keep problems hidden. "Some have chosen not to have services in," says Helen Byrne, "particularly where there is alcoholism involved.

"Families are concerned about judgments being made about their lifestyles, and that resulting in kids going into care."

There is a delicate balance to be struck between the child-centred approach of the Children Act - with its stress on keeping children in their own families - and the support they need if they are to have a decent life within a family where there is chronic ill health.

This balance is particularly delicate where there is mental illness. "The combination of a parent with severe mental health problems, and a child in need of protection, requires at times an impossible level of skill in risk assessment and decision-making, along with the right combination of optimism and caution," says Anthony Douglas. "A family rights perspective is essential, but a children's rights approach must be the bottom line."

Inevitably, headlines are made when a psychotic or hallucinating parent kills or seriously injures his or her own child. But many children with mentally ill parents take great pride in their responsible role - although Dr Annie Lao of Redbridge Healthcare Trust says that when they do come under stress, it will show up in school life.

"One of the commonest signs is school failure, either from an inability to concentrate in a learning situation, or arising from the need to stay at home and look after the sick parent. These children are often emotionally inhibited and constricted, often fiercely loyal to the sick parent and unwilling to be parted from them."

Sylvia Heal says the emotional burden and the anxiety level that some children experience - as well as the physical tasks and the tiredness - make it difficult for them to concentrate. She calls on schools and teachers to be more vigilant in looking out for young carers - they are in an ideal position to recognise and support them.

Rosemary Marsden, educational adviser for 14 to 19-year-olds at the Enfield education department in London, is conducting research into the effects of caring on children's school performance, an interest which arose out of the new focus on attendance, and national education and training targets.

"We were looking at ways of raising achievement for disadvantaged groups, such as children in care and poor attenders," she says. "We've become increasingly aware of the care and responsibility that children have. Not all kids who are absent from school are out there committing crimes."

The Enfield research has identified 38 young carers in eight secondary schools, although Rosemary Marsden says there could easily be more. The major effects are shown through difficulties with coursework, homework, punctuality, attendance, and personal and social problems.

Teachers in Enfield now have access to information on where to refer young carers for help, and in-service training with form tutors has raised awareness of the issue. Similar research is being carried out in Kirklees, and most of the rapidly-increasing numbers of young carers' projects around the country are working to raise the profile of the issue in schools.

Malcolm Wicks's Bill, whether or not it gains sufficient support to get to committee stage, has at least served to focus attention once again on young carers. "We all talk about community care," he says.

"I think the reality out there is community neglect, much of the time. Sooner or later, society has got to shift substantial resources towards actually achieving community care."

For information about and for young carers contact: Carers National Association, 20-25 Glasshouse Yard, London EC1A 4JS. Tel: 071-490 8818 (office) 071-490 8898 (CarersLine).

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