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Wendy Bryant, Mental Health and Disability Advisor in the Diocese of Guildford, writes about the phenomenon of informal care being offered by children within a family situation
Helping her is just part of life. I don't really remember it being any different.
I used to run away from school because I always wanted to be with my mum. I used to think that my mum was going to die. I was about eight. I kept getting told that she was not going to die, but she was not getting any better, which means she is worse - which means she will die. They treated me as if I was playing truant, but I wasn't I just said that I had a feeling inside me they did not understand.
Young carers" seem to be invisible. Children and young people whose life is in some way restricted because of the need to take responsibility for the care of someone who is ill, has a disability, is experiencing mental distress, or is affected by substance misuse" are rarely seen and seldom heard; by definition, they are not out and about at all the usual children's clubs and activities. Yet the latest "official" figure, the 2001 Census, suggests that there are some 175 000 young carers in the UK , and many would consider this now an under-estimate. And an even more sobering thought: a recent study suggests that there are 1000 children in the UK aged between 5 and 7 who give an average of 7 hours' care per day.
Young carers have always existed in our society, but changing patterns in family life, an increased emphasis on the rights of children, and the longer life expectancy of adults with disability or chronic illness are chief among the factors which mean that awareness of young carers has come to the fore in recent years.
A recent survey suggested that the health care costs saved by all the "informal carers" across the UK came to the equivalent of a whole new National Health Service, and carers under the age of 18 are very much a part of this - after all, if there was another adult in the family or a "formal" carer to carry out the task, they would almost certainly be doing it. Whilst 54% of young carers live in lone parent families, it is very common in two-parent families for the non-disabled partner to have to work long hours to meet the extra costs of illness or disability in the family, so that they are simply not there at the crucial times when help is needed with getting up, going to bed, washing and dressing, or giving medication.
The tasks carried out by young carers vary enormously - from personal care such as dressing, washing or help with toileting; physical care such as lifting; giving medication or physiotherapy, to the whole range of domestic chores; managing the family budget; collecting benefits and prescriptions; ensuring the safety of the family by, for example, hiding bottles of alcohol or tablets, and, quite often, looking after younger siblings. Children may also find themselves in situations where they are having to interpret quite personal intimate information, say to a doctor or social worker, either because English is not the first language or because of hearing, visual or speech impairment.
But what they do most of all is to worry.
"The teachers don't seem to realise the amount of worry that a carer has. Worrying is the biggest problem for me because I am very preoccupied a lot of the time and I find it hard to sleep most of the time. All this means my work is not as good as it could be; this seems to annoy teachers greatly."
Again and again the sheer amount of emotional concern and worry which young carers bear comes out in the studies which have been undertaken. Children find it difficult to concentrate in class because their minds are elsewhere, adding to the problems of lack of sleep, physical tiredness and stress which they are trying to cope with - compounded by the need to present a front that all is well, for fear of the disabled person being taken away or the children themselves being taken into care.
School staff are perhaps the best placed to identify situations where children and young people bear inappropriate caring responsibilities for family members. There are many accounts, both positive and negative, of how teachers have handled such situations.
"My school is very helpful and supportive. The teachers are very understanding; they have told me that if I have any problems with homework, not to worry and they give me enough time to complete it. From time to time, my headmaster asks me how my father is and how I feel about the situation. That is very important to me as it shows that my headmaster cares about me and my father."
Allowing children extra time for homework is the most obvious form of practical help, and in some areas a phone card scheme has been introduced for young carers, so that they can phone home during the day to check on Mum or Dad's state, or to check that the care worker or home help has been. Furthermore, young carers themselves have identified a need for promoting more positive images of disability and for raising awareness amongst teachers of young carers and their concerns.
Support is available to young carers through a network of Young Carers' Projects up and down the country, which aim to give young people opportunities for "normal" leisure activities, as well as time to talk about their problems and concerns. The Children's Society has been and remains at the forefront of promoting young carers' issues and in campaigning with and for them. The Society organises a now annual festival where young carers come to enjoy a wide range of activities, as well as each other's company, and which has led to a well-organised campaign to give a voice to the young people themselves.
It would be all too easy to think that if only we could supply 24-hour care of the kind and degree which people need, through the health and social services, then these children and young people would not need to be so burdened. But of course the situation is not as simple as that, and the reasons why young people have to care are many and complex. Most children naturally want to care for their mums, dads, sisters or brothers when they see their need, and to stop them doing so would be misguided.
"We wouldn't want to give up caring because we love them too much."
What young carers themselves say they need is more practical support; help at home which is reliable, flexible and appropriate, and understanding at school. They ask to be included in assessments and care plans, and for their own needs to be addressed. They want openness, honesty and accurate information; to be respected for what they do, and for their views to be heard. Surely this is the very least that they deserve.
© 2005 Wendy Bryant & Newsline