What do we mean by young carers?
Children have always helped out around the home, but young carers are defined as those who take on caring responsibilities for ill or disabled family members - parents, siblings, grandparents - that would be inappropriate for a child of any age. This care is usually personal, such as helping someone to the toilet, turning them in bed, helping them wash or giving medication. But it can be emotional support or practical assistance such as helping with household tasks such as cooking, shopping, cleaning, paying bills or looking after younger siblings.
Who are these children caring for?
They are looking after family members who have disabilities, physical or mental illnesses or have problems with drugs or alcohol. Most care for a parent, often a single parent, 76 per cent of whom are mothers; a quarter look after a disabled sibling, often when parents cannot cope. UK Youth, the network charity for young people's non-formal education, is pressing for a review of the definition. After a six-year project to raise awareness about young carers within the youth work sector, it is urging recognition for those who also give substantial support to parents with literacy and numeracy difficulties or act as advocates for parents for whom English is an additional language.
Are numbers rising?
Until the census of 2001 there were no reliable figures on numbers of children caring in families. Certainly no one imagined that, in the late 1990s, there would be as many as 175,000 in the UK, and that some of them would be as young as five. But that census figure did not include children caring for parents suffering mental ill-health or from drug or alcohol abuse. So the true figure is undoubtedly higher than that. Up to 12 per cent of young carers are looking after more than one person. The Children's Society found that, in one inner-city comprehensive, 17 per cent of pupils had a caring role at home.
Why are young carers hidden?
Children looking after parents with mental health and drug problems are reticent about declaring their responsibilities for fear of interference by outside agencies or being taken into care. Also, young carers tend to fall into the gaps between adult and child services, children's services not wanting to foot the bill for adult care and children being the unacknowledged component in adult community care packages.
Although, under the Children Act, young carers are likely to meet the definition of "in need", they do not generally reach the threshold to receive services, though the establishment of children's trusts may change this. One-fifth of affected families receive no professional support other than contact with a Young Carers project. Most families are not assessed until problems deteriorate to the point that child protection issues arise.
How are they caring?
Figures from the 2001 census show that most children looking after family members are between 11 to 16 and do so for between one and 19 hours a week.
However, 4,000 12 to 14-year-olds are caring for between 20 and 49 hours, and 3,500 for more than 50 hours. Nearly 1,000 five to seven-year-olds are also caring for more than 50 hours.
Lucy Falconer, co-ordinator of Buckinghamshire Young Carers, describes one five-year-old whose mother has cancer. "She is the only child at home and she knows she has to play quietly when her mum is in bed and fetch the things she needs. Once, when her mum fell, she got the sick bowl and phoned her older sister. She is not doing demanding physical things but she is having to take responsibility."
One fifth of all young carers are involved in intimate or personal care (toileting, catheterising, washing) and nearly 70 per cent are involved in domestic duties (cooking, cleaning, shopping), but 82 per cent undertake emotional support, a huge leap from the 43 per cent in 1997.
What are the effects on young carers?
Their own health is often severely affected because they may have to:
* Get up in the night to help someone to use the bathroom.
* Stay up late to do homework after all the household chores are done.
* Repeatedly lift an adult who has fallen.
* Cook for the family without having the skills to do this safely or healthily.
They may go through traumatic life changes such as bereavement, family break-up, poverty and homelessness. Many experience loneliness and isolation and suffer verbal abuse and taunts at school because of the nature of the family illness. Lucy Falconer says that children also suffer in later life when they realise what they missed out on as children and find it difficult to form relationships with peers. Many experience depression and can go on to self-harm and drug addiction; these stress-related conditions can continue into mid-life.
Because of disruption to schooling and the consequent lack of attainment, they also have difficulty finding skilled employment. However, many young carers pick up skills and have a maturity that teachers and support agencies would do well to acknowledge, but in a way that does not make them feel singled out or stigmatised.
An experience of schooling
Emma's father suffers from bipolar disorder, a condition that has had a massive effect on the family. He lost his job and, because he was the main breadwinner, the family lost their house and are now living in a rented flat. Although the father was taken into psychiatric care, he kept escaping and coming back to the family, who were forced to call the police.
Because of her husband's illness, Emma's mother became depressed and, as her younger brother started displaying behavioural difficulties, Emma, 16, found herself being the one holding the family together. "I cook, clean and I'm just there for my mum. Because of Mum I didn't want to go to school and my brother didn't either, but we're scared that Mum might have to go to prison. When I did go to school, they (teachers) just kept saying 'where's your work?' and moaning at me. I didn't want to tell them; I was afraid to tell because of Mum, so I just left."
Emma started self-harming and was withdrawn from PE and design and technology "because of my arms and stuff", but she says one member of staff humiliated her about cutting herself. She also says teachers stopped including her in things such as art projects because of her poor attendance. She is now in a pupil referral unit, but rarely attends that either. "When you are really down you cannot concentrate, and if you are told off for that, that makes you feel worse and you don't want to go in again. I just wanted someone in school I felt I could really talk to, who would be there for me when lessons got too much."
What impact can this have on schooling?
Educational difficulties are common. Surveys by Chris Dearden and Saul Becker of Loughborough University's young carers research group have found that nearly one in three young carers of school age is missing schooling.
While it is not clear whether this is a direct result of caring, or because they are vulnerable children generally, there are particular problems.
* Poor concentration, caused by anxiety. One child said: "I just worry when I've got to go to school. I ring him (father) up at break and dinner to see how he is... I can't concentrate at school. Even when I am there, there's no point in going really."
* Lateness and absence. Children often stay at home in case they are needed during acute phases of an illness. They may be particularly afraid to leave parents with a history of self-harm or attempted suicide. Because children don't want people at school to know their circumstances, they often make up unconvincing excuses for absence and are given detentions which they cannot attend, so relationships with teachers worsen until it becomes easier for children to stay at home where they feel valued. Chris Dearden says: "If a child is confronted about their non-attendance, they're not going to say 'it's because my mother's a manic depressive' or 'mum's catheter leaked and the district nurse didn't turn up', especially in front of peers."
* Poor attainment. A study by the Loughborough University research team of 650 young carers in 1998 found that one quarter had no GCSEs.
* Financial difficulties. The 16-18 educational maintenance allowance for the children of families on low incomes is dependent on punctuality and good attendance. Young people who are late and missing lessons may have their EMA withdrawn or be ineligible because they cannot attend the statutory number of hours each week. However, if they study for more than 22 hours a week they may lose their invalid care allowance (about pound;50 per week). Young carers' charities say the benefits system needs to be more flexible.
* Bullying. More than 70 per cent of child carers say they are bullied (slightly higher than children in general) and singled out because they are "different" from their peers or because their family problems are known.
Many do not talk about their home situation in case the bullying worsens.
* Tiredness. Young carers can work long hours, sometimes into the night. "I often lay there waiting for my mum to call, too scared to go to sleep in case I don't hear her shouting if she needs me," says Catherine, 18, from the Suffolk young carers' group. She has been looking after her mother, who has multiple sclerosis, for seven years, and is sometimes awake for most of the night.
* Poor peer relationships and social isolation because of being "different" and not being able to join in extra-curricular activities at school or visit friends.
* Appearance. Clothing may not be clean or tidy and personal hygiene may be poor.
* Behavioural problems. According to Jenny Franks, co-ordinator of the Children's Society young carers' initiative, children who have responsibilities at home may erupt into aggressive, angry behaviour at school. At home, they may feel they have to be controlled, protecting parents from any negative feelings they have. "Teachers see the disruptive behaviour and react accordingly," says Ms Franks. "Some of these children end up with exclusions." The charity says the real reasons for a young carer's behavioural problems are rarely discovered until it is too late to help them change.
What can schools do?
School offers normality and a break from family difficulties. But teachers are often the only professionals young carers meet on a day-to-day basis, and sympathy and understanding is key to whether they cope with juggling home and school demands. A young carers' service in North Yorkshire found that 75 per cent of its clients were not known by teachers to be carers.
Young carers say that having someone to talk to in confidence at school is important to them. Teachers need to be sensitive.
* Help young carers to identify themselves by presentations in assemblies and personal, social and health education lessons and by displaying information on school noticeboards. Materials should include a named person and a contact or helpline number in case a pupil wishes to seek help after a lesson.
* Include a statement on schools' admissions forms to identify families where someone has a long-term illness or care need; adapt home-school agreements to ask if there is family disability or illness which may have an impact on the agreement being met.
* Provide access to a phone so pupils can contact home to put their minds at rest.
* Help pupils to keep up by offering lunchtime homework clubs, lesson notes for missed classes and flexibility with deadlines.
* Link up with young carers' projects.
The Government's national carers strategy (1999) suggests that schools designate a member of staff as a link between young carers, the educational welfare service, social services and young carers' groups. Few schools have such a link officer.
The children with caring responsibilities team at West Sussex County Council has produced a set of postcards for young carers to give out to teachers, friends, care professionals and family members. These enable carers to alert people to their situation and how they feel about it, without having to explain face to face. The team's project manager, Emma Maynard, says: "Many young carers want to do the caring; they just want acknowledgement and support when things are difficult."
* The Princess Royal Trust for Carers has a UK-wide network of 73 young carers projects: www.youngcarers.net.
* The Young Carers' Initiative, based at the Children's Society and funded by the Department of Health. The trust and the YCI have jointly produced a good practice guide, "Making It Work": www.childrenssociety.org.ukyoungcarers.
* The Disabled Parents' Network: www.disabledparentsnetwork.org.uk.
* UK Youth: www.ukyouth.org.uk.
* Department of Health carers' website: www.carers.gov.uk.
* Carers UK: www.carersuk.org.
* West Sussex County Council children with caring responsibilities team (for young carers' postcardstel 01243 852786852761).
DID YOU KNOW?
* There is likely to be at least one young carer in every class in every school, some as young as five
* Most are caring for parents, usually a mother, for between one and 19 hours a week, but nearly 1,000 five to seven-year-olds are caring for more than 50 hours
* Tiredness, anxiety and poor attendance can contribute to low attainment
* One in three young carers is missing schooling. A quarter have no GCSEs
* About 80 per cent emotionally support a family member - more than the number who cook, clean and shop