Caring's true cost
On a searingly hot summer day, crowds of young people are gathered in the grounds of Fairthorne Manor in Hampshire, near the sea. They spread over the tiered lawns, sprawl in groups under the trees and splash canoes along the meandering river Hamble at the bottom of the valley. The carefree and relaxed atmosphere is in stark contrast to the thoughts some have expressed on the "I wish" board near the peg-tiled manor house. "I wish my mum wasn't so ill and didn't have to take so many pills. I wish I knew that she was all right. I wish I didn't have a mum that wants to get rid of me all the time." "I wish my brother's Tourette's was cured and my family was happy." "I wish my teacher would leave me alone."
The 600-plus young people gathered in the extensive grounds of the YMCA's national centre near Southampton are all young carers, brought together by the Children's Society for a weekend of outdoor activities. The idea, says organiser Jeremy Coombe, is to "consult young carers about their needs but also to enable them to have fun". They're certainly doing that - dancing in formation on the stage in a giant marquee, snogging in the shade of the tents and playing football in advance of the evening's big match. But their messages about life at home are sombre.
Thousands of young people from the age of about eight upwards are believed to take on caring roles in families. When the Department of Health tried to measure the extent of the problem in the mid-1990s, they came up with a figure of between 19,000 and 51,000 young carers. Although most of the children at least lived in households with another adult, many were still "bearing a level of responsibility which they found difficult to cope with". The children helped with housework, assisted with mobility or "kept an eye" on the adult in need. Some also had to give personal care - washing their parents, dressing them or helping them use the lavatory.
But the close identification between child-carers and parents with disabilities has moved on to an understanding that "it is families in crisis who throw up young carers, not necessarily families with a disabled parent", says Imelda Redmond, director of policy and development at the Carers National Association (CNA). Staff at the approximately 120 young carers' support groups in the UK are increasingly seeing children from families where there is drug or alcohol abuse, or mental health problems. "The emotional toll on the child is enormous," says Ms Redmond.
There is no doubt that some young pupils face tremendous pressures at home. Fourteen-year-old Emma Hedeker, from Winchester, looks after her father, who is dyslexic and schizophrenic. She has one brother, aged 13, and between them they give practical and emotional support to their father, with help from his mother, who lives nearby. "Sometimes we have to cook and stuff," she says. "I have to write the letters." She writes her own absence notes for school - Swanmore secondary, near Southampton. The emotional support is more taxing. "When Dad's feeling low, we tell him it's going to be all right tomorrow and we love him. It makes me feel upset but I have to be happy and cheer him up," she says. "Last weekend I was crying because I was really worried about him. He was crying as well."
Emma is mature for her age and proud of taking responsibility. "In a way, I feel more special," she says. "Without me, everything could go wrong. My dad would probably be sat in a hospital and my brother would be living with my nan or something."
Brother and sister are close, but it is difficult for Emma to develop her own social life and cope with school work. The previous weekend, she had been planning a rare sleepover at a friend's house. But her father phoned to say he was ill and she had to go home.
Some of her teachers know her home situation, she says. Some don't. "Sometimes I have trouble meeting deadlines for homework," she says. "If Dad's really bad, I sometimes go to teachers and speak to them quietly. They're usually quite understanding. They offer help with the work. Most of the time I talk to my nan about my problems. If Dad has to go into hospital, she comes and stays with us."
Although there is more recognition of the plight of young carers than there used to be, some schools are still failing to spot those who have to look after their parents, says Jeremy Coombe, of the Children's Society Rights and Participation project in Hampshire. "There is scope for more teachers understanding the implications of caring, in a way that some are not at the moment," he says.
If teachers are unaware of children's home circumstances, it may be because some children go to great lengths to conceal what is happening. Parents and children often fear the involvement of social services. But one thing young carers are likely to have in common is the difficulty of keeping up with school work. A report on the adult prospects of young carers published by the Joseph Rowntree Foundation in June found that a large proportion had educational problems and missed school. Many left school with no qualifications. Half the sample had missed school and a quarter had no GCSEs.
Researchers Chris Dearden and Saul Becker, of Loughborough University, also found that: "The majority confirmed that missed schooling was related to caring. This was because they were reluctant to leave ill parents alone, because they felt they were needed at home or, in a small number of cases, because parents did not want them to go to school. In some cases, teachers and education welfare staff had colluded in these absences, perhaps in the belief that this was supportive."
Sometimes, presumably, it is. There is no blueprint for how schools can help young carers, says Jeremy Coombe. "It's important to listen to the young carers themselves. Professionals need to understand that they want to make decisions for themselves."
A DFEE circular last year on social inclusion highlighted the risk to young carers, advising that while absence from school could be approved in a crisis and for a limited period, schools should continue to set work and should put a time limit on the absence. The government suggests that schools should nominate a member of staff with responsibility for young carers, of whom they say there may be up to 30 in an average secondary school.
Hampshire's recently-issued inter-agency policy document for supporting young carers has a range of suggestions for schools, including making individual education plans for young carers and ensuring discussion of disabilities and caring in PSHE. "Staff should be aware that young carers are entitled to an assessment of their own needs from social services, and that social services are able to arrange help that could benefit the whole family."
Kirsty Matthews, 18, has gone through secondary school as a young carer. Her mother's muscular dystrophy worsened in Year 7, when Kirsty started at Elliott secondary school in Wandsworth, south London. As her mobility declined, it fell to Kirsty to look after her. They have "Christmas card" relations, says Kirsty, but no one in the family on the spot.
Recently, the two women - who live in a second-floor flat - have received help from the charity Support and Housing Association for Disabled People (Shad). "Before that," says Kirsty, "I was doing everything from personal care to housework. She had really bad leg ulcers and I got good at dressing them - I had to do it twice a day."
Kirsty - who wouldn't mind being a teacher but is adamant that she does not want to be "anything in the NHS" - says her attendance at school has not really suffered, but her homework and social life have. "My mum never stopped me from going to school but I wasn't doing any homework. I was predicted to get As in my GCSEs and I kind of resent the way I wasn't able to revise. I was still doing catch-up work when I should have been revising." Kirsty took 10 subjects and managed to achieve eight Bs, one A (for RE) and one C.
Teachers at her school have been helpful, she says, once even carrying her mother up the stairs for a parents' evening when the lift was broken. But she has found making friends difficult. "I haven't got a social life at all," says the dark-haired young woman with a pierced nose. "It's fiddly to work out timetables for going out in the evening. At the end of school, all the rest of Year 13 went to the pub but you just can't. You know your mum's relying on you and if she fell or something and you're not there, she could be lying there for hours."
Kirsty is waiting for the results of her A-level in English and will repeat Year 13 at Elliott from September to take Spanish (she has completed the A-level coursework, but did not take the exam), and perhaps a third subject. "When you're doing all the housework, all the shopping, all the personal care, sometimes going to bed late, getting up at 7am, teachers see that you're tired but they never really ask," she says.
"Timed essays are difficult," she says. "In 45 minutes, she'll drop her spoon or the remote control to the telly or she'll drop her cup of tea." She also says motivating herself to study is difficult because she has no life outside home. "Other people might think 'Oh, I'll do my work then I'll go out'," she says. "But I've got nothing to reward myself with, apart from Young Carers (a support group) once a month."
The Carers National Association says understanding about young carers is becoming greater. A series of CNA conferences and workshops over the next three years will "explore the whole policy area", says Imelda Redmond. "The focus in recent years has been on young people who are caring. Now we're looking at what support the family needs so young people don't have to carry out inappropriate tasks, looking at policies that support families so children can have childhoods."
The Children's Society: www.the-childrens-society.org.uk Tel: 020 7841 4436 Carers National Association: www.carersuk.demon.co.ukTel: 0808 808 7777 (helpline) A free resource pack for secondary schools, Talking About It - produced by the Meridian Broadcasting Charitable Trust, the Department of Health and the Calouste Gulbenkian Foundation - includes a video in which young carers are interviewed. The materials, which include pupil worksheets and teacher's notes, also cover depression, bullying and loss. pamp;p pound;7.50 from the Meridian Broadcasting Trust, Meridian TV Centre, Southampton, SO14 OPZ. Cheques to The Resource Base Ltd.Our Mum has Parkinson's, by teacher Karen Goodall and published by the Parkinson's Disease Society, contains an account by a sufferer's 11-year-old daughter and gives information for both children and adults. Free with pound;1 pamp;p (cheques to PDS Sales Ltd) from Sharwood Services, Westfield Business Centre, Main Road, Westerfield, Ipswich, Suffolk IP6 9AB. One copy per order
The Children's Society put up a board at the Young Carers Festival inviting children to send messages to their schools. They wrote:
* "Teachers should realise how much trouble it is and how much we have to help instead of looking after ourselves."
* "Don't give young carers after-school detentions because they have to look after people at home."
* "They should be more considerate homework-wise. Because we do a lot of work."
* "They need to recognise the signs that someone needs help and be there to listen."
* "Listen to me."