‘My Daughter’s Childhood Is Being Stolen, And I Feel I Am The Thief’

Jessica is just 11 but she has to cook, clean and care for her paralysed mother. And she’s not alone. There are more than 175,000 children who act as chief carers for their ill or disabled parents. Demands are growing for a public inquiry into why they get so little support.

Mathematics is the lesson Jessica Shaw loves most at school. She plans to choose it as one of her GCSE subjects and hopes, eventually, to study it at A level. Last winter, however, no matter how hard she tried, she kept falling asleep in maths class.

It was hardly surprising and her school was very understanding. Jessica’s mother, Michelle, who is paralysed from the waist down and has had limited use of her hands since she was mown down by a drink driver, habitually fell out of bed during the night. Jessica became so terrified that she wouldn’t hear her mother struggling to get back into bed that she tried to stay awake. Which is why she kept dropping off in class.

The answer, social services decreed, was to enclose Michelle’s bed with a rail to stop her tumbling out. It worked, and Jessica began sleeping again, albeit fitfully. But then social services made another, more bewildering decree: since Michelle was no longer falling out of bed, she was no longer entitled to the adult carer who came to the family for one hour each day from Monday to Friday.

The result was that Jessica, at 11 years old and an only child, became Michelle’s sole carer. In truth, it is the role she has more or less performed since she turned six, and her father left. With the exception of that one hour of help on weekday mornings, Jessica did most things anyway.

“What sort of life is that for a little girl of 11?” Michelle, 36, asks in obvious frustration. “We did get the carer back after six months of pleading. But though she is a help, it’s Jessica who does 99 per cent of the work looking after me and the house. She bathes me, does the washing up, she has it all to do. I can’t reach the cooker from my wheelchair so with the exception of a few basic meals that Jessica can cook, we have ready meals. They are safer for her to make.

“I can’t change the beds, I can’t put on my shoes. I don’t want to put this burden on my daughter: she should be able to play with her friends after school, to enjoy her young life. Instead, she has to look after me. Am I angry? So angry. So angry that her childhood is being stolen. And I feel like I am the thief. I worry about her future, the worry I cause her. I worry for her all the time.”

As Michelle’s pent-up frustration tumbles out, Jessica bounds into the room. She has cut herself and shows her mum. “What dressing have you put on that?” Michelle asks anxiously. “See,” she says, tears threatening, “I can’t even open a packet of plasters to put on her cut.”

Jessica Shaw is one of the 175,000 children in this country who are known as the ‘hidden carers’: all under 18, the majority have no other help or support and almost all suffer enormous stress and anxiety. Yet even these numbers are conservative. The Government estimates that there are another 300,000 children who have taken on the role of carer because their parents, though not disabled, are addicted to alcohol or drugs.

The most recent report into the lives of young carers paints a depressing and worrying picture. It reveals that the average age of a child carer is 12; one in 10 is caring for more than one adult; two-thirds do the domestic chores; 48 per cent provide general and nursing care; and 13,000 spend more than 50 hours a week caring for their parent.
     
In the past week, two people have spoken out in their support. Thomas Osborne, the deputy coroner for Milton Keynes, was so concerned by the seeming suicide of teenager Deanne Asamoah, who cared for her seriously ill mother and died after taking an overdose, that he has demanded an inquiry into the growing numbers of child carers in Britain. Deanne took seven of her mother’s morphine tablets, three days after her 13th birthday, in what Mr Osborne described as a ‘cry for attention’. Her death, he said, was “a tragedy that need not have happened and should not have happened”. He has written to Beverley Hughes, the children’s minister, seeking an investigation into the plight of young carers.

Just days later, Barbara Keeley, the Labour MP for Worsley, introduced her Private Member’s Bill, the Carers (Identification and Support) Bill, in the House of Commons. If it becomes law, it will compel schools and local authorities to set up a clearly defined policy to support child carers. “It’s clear the burden put on the young girl who died was more than she could bear; it is time that more was done for these youngsters,”‘ Ms Keeley says.

“One of the problems is that all too often the parents feel they will be stigmatised or that their children could be taken into care if they seek help. But most have enormous trust in their GPs, and I feel that both doctors and schools could be a point at which these children could be identified earlier and given more help.”

The level of help available for child carers and their families is, however, a lottery. “Receiving help from Social Services depends very much on where you live,” says Jenny Frank of the Children’s Society. “And, frankly, the resources are not always there to meet the needs.” To be eligible for help from local authorities, a child must be assessed as being “at risk” on one of the two highest levels: their lives must be under threat, or a substantial level of care must be needed. To date, only 18 per cent of child carers have even been assessed.

Michelle and Jessica are among the lucky ones. As well as having an adult carer for one hour a day, they have a cleaner for two hours a week. Michelle must take extremely strong painkillers and every few weeks her doctor gives her liquid morphine to help her cope with the intense pain. “Anything could happen to Jessica when I’m on that,” she shudders.

“But it’s the future I worry about. What sort of effect will this have on my daughter? And I worry too that I am not well enough or actively involved enough to instill proper values – and that is important. We had a massive row the other day because I suspected Jessica had experimented with smoking in her room. Any other mother would creep up the stairs to find out. It’s a bit hard in a squeaky stairlift.”

For Jessica, taking care of her mother has become a way of life. “I love my mum – I want to help,” she says. “But yes, it would be nice to be able to play with my friends after school, and I worry all the time I am at school. What if I put my key in the door when I get home and she is sprawled on the floor? What would happen to Mum and me then?”