‘I can’t do the things my friends do’: Life as a teenage carer

Ava-Grace Britton is 17 and studying acting at college in north London. She likes going out, seeing her friends and wants to go to university next year.

Unlike most of her peers, however, she also cares for her father, Paul, who has significant mobility and memory issues after suffering a series of strokes eight years ago.

Along with her mother Karen, Ava-Grace monitors Paul’s blood glucose levels, gives him medication and helps with dinner and jobs around the house.

“I worry about him all the time,” Ava-Grace told the BBC. “Before I go to college I help him and most days I have to return home quickly to look after him.”

She is not alone. Officially, census data suggests there are around 130,000 carers under the age of 18 in England and Wales.

But the true figure is thought to be much higher, with many young carers hidden from view. The Carers Trust estimates there could be as many as 1 million carers under 18, with another 500,000 aged 18 to 25.

For some the responsibilities are significant, amounting to more than 50 hours a week – with consequences on young carers’ social and academic prospects.

Paul’s strokes were brought on by a sepsis infection, which he caught after cutting his thumb at work. His health is further compromised by diabetes which needs careful monitoring.

His condition deteriorated so much he had to give up work as a borehole engineer. He is now cared for full-time by Ava-Grace and Karen, who runs her own charity which organises lunch clubs for the elderly and vulnerable.

“It turned our life upside down,” said Karen.

“Paul spent three months in hospital and in rehab. I don’t know how I would cope without Ava-Grace.”

Ava-Grace says her caring responsibilities have demanded a number of trade-offs over the years.

“You have to make sacrifices. I can’t do all the things my friends do,” she said.

“At one point I was really enjoying dance and could have started competing, but it would have been a huge time commitment which wasn’t possible.

While enjoying college now, she had to move schools several times after being bullied and struggling with attendance because of her caring responsibilities and epilepsy, which she has to manage.

“I worry about the future,” she said. “I really want to go to university, but can’t imagine going anywhere too far from home. I know my dad needs me.”

More than half of young carers, like Ava-Grace, provide support to parents.

The rest mainly look after siblings and grandparents. The Carers Trust says there has been a big rise in non-parent carers in recent years as the cost of living crisis has meant parents have had to prioritise earning money, leaving children to care for other family members.

That can make socialising and pursuing hobbies difficult as well as lead to higher rates of bullying, school absence and even suspensions.

Young carers are 25% less likely to achieve five GCSE passes including English and Maths than their peers, according to Department for Education data.

As a result they are twice as likely to be out of education, employment or training for two years or more.

Some support is available. Young carers are entitled to assessments from their local council to look at the impact on their health, education and wellbeing.

“When young carers get these it can make a real difference,” said Andy McGowan, the lead on young carers at the Carers Trust.

“But it takes many years of caring before they are actually identified. And then the support in place to help is patchy, it really depends on where you live.”

McGowan, who was a young carer himself to both his parents, says even when help is given to the young in the form of respite breaks, peer support and counselling, the underlying issue – the caring demands being placed on them – is often not addressed.

“The threshold to get adult social care from councils to relieve the caring burden is so high, many don’t get help. Until that is addressed, the inequalities young carers face will not be tackled.”

The NHS could do more, he added, particularly in terms of preventative and early support for things like substance misuse and mental health, which are also contributory factors to the caring responsibilities young carers have.

“Often young carers are left to fight their own battles for too long – and so school and their own health come second,” he said.

In July, the government published an action plan for unpaid carers which included measures to support young carers, including improved help in schools and joined-up support between the NHS, social care and education.

Other parts of the UK have their own policies – in Scotland, for example, there is a dedicated young carers’ grant.

“Through our new national care service, this government is determined to build a system that recognises the extraordinary contribution of unpaid carers, supports them better and, in particular, helps young carers,” a government spokesman told the BBC.

For families like the Brittons, more help cannot come soon enough.

“I worry about the impact caring has on Ava-Grace,” said Karen.

“She has had to grow up very quickly – that has had benefits, she is calmer and more mature than many girls her age and she has a real strength about her. But Ava-Grace and others like her need more help and understanding.”