Shocking new figures suggest one-in-five secondary school children in England care for sick and disabled family members at home in what campaigners have called “a monumental wake-up call” for a “systematic” problem.

New data from BBC News and the University of Nottingham shows there could be many more young carers than previously thought.

A leading charity claims austerity and cuts to benefits mean children are increasingly having to pick up the pieces and help care for parents or siblings.

The Carers Trust is now calling on the government to take urgent action to ensure support services are in place for children across the country who may be struggling with the extra responsibility heaped on them. 

The figures show that 22% of children who responded to a questionnaire admitted to caring for a family member who had an illness or disability. Nearly a third of those children are responsible for high-level caring for relatives who need support with everyday tasks.

Official figures on young carers is not gathered, although the 2001 census – which is completed by the adults in the household – only identified 166,000 young carers in England aged between five to 17.

If the results reflect the country as a whole, the results of the research would mean more than 800,000 secondary school children aged 11-16 years in England are having to care for someone at home. It would also mean that 260,000 are regularly doing domestic work, household management and emotional care.

Researchers say the new findings are the clearest and most current picture available of the number of children who have to care for someone at home in England.

Twelve-year-old Nick Ollerenshaw is one of the thousands of children who has caring responsibilities at home. He lives in Manchester with his parents Jaclyn and Mark, and his sister Willow. 

Willow, who is now seven, was diagnosed with congenital muscular dystrophy when she was a baby. It’s a condition which means she is totally dependent on round-the-clock care. She also has moderate learning disabilities and autism.

The family were put under further pressure when Mark suffered a brain haemorrhage two years ago. It was a long and hard road to recovery for the police officer and Jaclyn said it added to her son’s responsibilities at home. Last year, Willow also underwent a serious operation, which was repeatedly delayed, which the whole family found incredibly stressful.  

Nick is involved in most aspects of Willow’s daily care. He looks after her while his parents get ready for work in the morning, and again while his mum cooks dinner in the evening. 

He said: “I’m always finding something to do to help her. Sometimes I feed her. I scratch her ear if she needs it and hold her when we sit on the couch.”

Jaclyn said her son suffers from anxiety and spends a lot of time worrying about Willow’s care. He admits that he finds it hard to trust other people to look after her properly.

“His main focus is Willow and not what he is doing as a carer. It’s quite a beautiful thing really. He’s not ‘poor me’ or look at all the things I have to do,” she added.

“What he talks about is the need to education people about disabilities. It’s quite a powerful thing. It’s the innocence of children. He’s just not selfish at all. His primary concern is Willow no matter how many times we try to pin him down to what we can do to make things easier for him but he always says he is alright.”

The youngster said he finds it hard at school when people make jokes about those with disabilities. 

He added: “At high school people don’t really understand how people can be affected by little comments – things that shouldn’t be said about people in wheelchairs. It’s not that common but it does happen and people will make jokes, which I don’t find funny.”

Most people at school don’t know about his sister, but Nick has shared it with his close friends.

“It’s nothing to show off about so I just keep it to myself but I do tell my close friends. I also have counselling at my school so I can talk about it. It’s very useful especially when my sister was having her operation. It was very serious and I was talking about how worried I was when it kept getting delayed.

“It got delayed five or six times and sometimes at very short notice. Each time, we just had hope and the day before we would get everything ready and be all packed up and then we would hear it was cancelled.” 

His mum said: “As a parent it’s important he doesn’t get forgotten about. He can be a casualty sometimes. Willow needs so much support and attention all of the time so it’s very difficult to balance time between both children in a fair way.

“What I find is we often speak to Nick as an adult and expect him to understand like an adult does. A lot of times we have to stop ourselves and remember that he is 12.”

Nick doesn’t want to complain about how much he has to help at home but recognises that he has more to do than many of his classmates. “It’s not easy to have that much responsibility. It’s not easy at all actually,” he said. 

Nick’s experiences are reflected in previous research by the Carers Trust, which showed that being a young carer can affect a child’s school attendance, educational achievement, mental and physical health and future life chances.

Giles Meyer, the charity’s chief executive, said the new data should be “a monumental wake-up call” and although he is not surprised by the figures, he said they are shocking nonetheless.

“To think if you do go into a secondary school classroom, six out of the 30 children could be young carers at home and two of those could be providing high levels of care is surprising still,” he added.

“It’s shocking to see how systematic it is and the numbers across the country are really quite massive and extraordinary.”

Meyer said the data has helped fill a gap in knowledge, as there is no central system for finding out how many children really are carers. The task is also hindered by the fact that many young carers don’t identify themselves either they don’t realise it or they don’t want to because they don’t know what the implications for asking for help will be.

“The key thing is to get the right support in for the family. Increasingly over the last few years with austerity and cuts for individuals, it’s the families that have been picking it up and this study shows that children are increasingly picking it up in the family home as well,” he said.

Meyer said support that could help young carers cope include respite care, peer support groups and understanding and flexibility at school. Unfortunately he said such measures are very “patchy and ad-hoc” around the country, as they rely on already over-stretched local authorities to deliver services and identify young people.

The study involved 925 children, in years seven and 10 from schools who took part in BBC School Report.

Researchers used questionnaires to assess the level and amount of caring, carried out. Each child answered 18 questions about their role at home, ranging from washing up and cooking to managing household finances and the washing and dressing of a family member. Points were based on how often the tasks were completed.

Of the 200 young carers, 177 responded fully about the level of care they give. The scores from 56 (32%) children showed them to being carrying out a high level of caring, with 16 (9%) children doing a very high level of caring.

Mothers were the most common person (46%) who young people looked after followed by siblings (40%). 

Physical illness were most frequently cited as the reason they needed to care (35%) followed by long term illness, which 24% said. Mental health was also given as a reason for caring by 24% of the children and 6% highlighted drug or alcohol problems.

The results also found that girls were more likely to be carers than boys, with 59% of young carers being female, compared to 37% who are male.