‘Grief and confusion clashed with unconditional love and joy’: The hidden lives of young carers

Normal parts of being a teenager, like wanting to fit in and spending time with friends, don’t go away when you care for someone – but they are replaced by something much more meaningful, says Ellie Fry

The last census puts the number of young carers (children under 18) in the UK at nearly 166,000, but recent research suggests that the figure may be as many as 800,000 in England alone (iStock)

According to the last census, there are 166,000 young carers in England, but recent research suggests that the actual figure may be as many as 800,000 – that’s six young carers in every secondary school classroom. Despite being so prolific, carers are often hidden from view – attempting to juggle their caring role with school but too terrified to seek support. Carers Week 2021 runs from 7-13 June and aims to raise awareness of the everyday challenges facing young carers.

*This article was originally published in 2019*

Like many young carers, I can’t tell you the exact moment my mum got sick. Nor can I pinpoint the moment I started helping her and my family get through day-to-day life. But there was a moment, 10 years ago, when my mother went from healthy to bed bound. She spent weeks unable to move, struggling to even sip water or to stomach a slice of toast. That was when everything changed.

We now know that my mum has myalgic encephalomyelitis (ME), a chronic disease that impacts the body’s nervous and immune systems. Previously known as chronic fatigue syndrome, it is at least as disabling as multiple sclerosis and congestive heart failure – but there is currently no cure and reaching diagnosis is a battle. My mum can’t walk further than half a mile without crashing for days afterwards. On her best days, she is mostly housebound; even going for a walk is a distant dream. She spends her worst in bed, unable to stand any noise or light. ME can also impact her cognitive capabilities: her words can often become mixed up and slurred.

In the years after she got sick, I helped my mum with everyday tasks that kept my family going. This could mean making sure that she had eaten and taken her pain killers; it could involve undertaking basic household chores or it could mean dropping my plans to become available at a moment’s notice to pick my sister up from school or to look after her at weekends. It also meant that from the age of 14, I had to be strong for the rest of my family, even when I didn’t feel strong myself.

The last census placed the number of young carers (those under 18) in England at nearly 166,000, but recent research suggests that the actual figure may be as many as 800,000 – that’s six young carers in every secondary school classroom. Despite being so prolific, carers are often hidden from view – attempting to juggle their caring role with school work but too terrified to speak up and seek support, suffering mental health complications as a result.

Childline defines a young carer simply as “someone who looks after another person.” This could be because the person is sick, has mental health issues or physical disabilities, or as a result of substance abuse, that has left them unable to care for themselves. Caring can range from the practical – cooking, cleaning, and admin – to helping someone with physical tasks, like walking or communicating.

39

per cent of young carers admitted that nobody at school was aware of their caring role

Although I didn’t recognise it at the time, being a young carer shaped me. But with thousands of hidden young carers across the country and with a predicted £3.1 billion funding gap for children’s services by 2025, having the provision in place to identify young carers is more important than ever, so they can seek the help they need.

Young carers doing over 50 hours of care a week are five times more likely to report that their own health is “not good” when compared to their peers, while the 2017 GP Patient Survey found that a third more young adult carers (aged 18-25) report anxiety or depression than other young adults.

And yet, for many young people with caring responsibilities, identifying oneself as a young carer can be difficult, because it is hard to see your own life as being abnormal when it is all you’ve ever known.

Lucy Childs, 22, struggled with the pressure of studying for her A-levels and looking after her mother, who has a severe mental health disorder. But Lucy has been a carer for her whole life, so she didn’t know any different: “A part of me thought that everybody was doing it, but they were just coping with it better and that I wasn’t good enough. But looking back, none of my friends were going through what I was going through.”

It was only when she turned 12 that Lucy noticed how other children her age weren’t rushing home from school to look after their parents or siblings – she also helped to look after her younger sister who has ADHD. “I kept everything hidden due to fear of being ‘found out’ and social services separating my family. The thought of my mum being put into hospital and me and my sister going into care terrified me.”

Lucy Childs, 22 has cared for her mother her whole life (Carers Trust Wales)

In a survey by Carers Trust, 39 per cent of young carers admitted that nobody at school was aware of their caring role. Even if they do know how to reach out, some young carers worry about seeming incapable of looking after their family member, or are scared that they will be separated from the people they care for.

Dr. Sheri Jacobson, clinical director of London-based psychotherapy and counselling clinic, Harley Therapy, suggests that keeping caring responsibilities hidden can damage a young person’s sense of self: “Leading a double life adds to the lack of identity that the codependent caregiver/sick person dynamic already creates. Not having a core sense of who we are can mean we feel very lonely and lost. The less connected we feel, the more alone, or as if we are somehow essentially 'flawed'. Our esteem drops.”

Although there is legislation in place to ensure that authorities recognise young carers, being identified can often be a game of chance. If children aren’t referred to carer services by someone, it is left up to them to reach out for help.

Where I lived back home, you could stand on the taff trail and look across at Cardiff university. Every time I saw it, I would kid myself that I could go there one day

Lucy Childs

Oliver Davies, 13, cares for his brother Leo, who has pathological demand avoidance (PDA) – a condition on the autism spectrum. He has helped look after Leo as long as he can remember, but didn’t realise he was a young carer until a few years ago: “My mum was at a big conference and she bumped into a support worker for young carers and they got talking and realised I fit the definition.”

Better communication between people working in health, education and social care is needed to identify more young carers. Those who care often have no choice but to leave education to fulfil their caring responsibilities – recent research shows that 29 per cent of young adult carers aged 16-25 had dropped out of college or university because of their caring role.

Carer’s allowance can only be accessed if a young person isn’t in full-time education and is caring for someone for over 35 hours a week. This leaves some young carers in a position of choosing between financial support and education, with young adult carers aged between 16 and 18 being twice as likely to be not in education, employment, or training.

But some young carers do manage to stay in education, with the help of carer services. Rhondda Cynon Taf Carers (RCT) – a project for young carers run by children's charity Action For Children – not only helped Lucy realise that she wasn’t alone in her caring role, but also helped her to plan her future. She had always been ambitious, but going to university felt like a distant dream.

“Where I lived back home, you could stand on the taff trail and look across at Cardiff university. Every time I saw it, I would kid myself that I could go there one day.It was a pipe dream, I never really thought that I’d get there because I had so many more important things to be doing, like looking after my mum. But when I got my acceptance through, the pipe dream of that little kid had come true.”

15

per cent of councils did not feel confident that they would be able to fulfil the assessment duties for carers

Arthur Leighton, 24, has cared for both of his parents since he was just six-years-old, but struggled to access the services that Lucy did. Originally from Birmingham, he moved his family to York in 2017 so that he could attend university while continuing his caring role.

“Before we moved, I tried to get carer’s support for my mum, but I was passed around from case worker to case worker. The social worker came round once but we never heard from them since.”

Since moving, Arthur’s sought the help of care workers, which has given him the time to pursue his degree. But even after receiving this support, the long-term impact on his health manifested itself when he had a mental breakdown.

Arthur Leighton, 24, wishes that he could have got help from carer services sooner (York Carers Centre)

After his mother got septicaemia last October, (the same condition that caused his father to have a heart attack a year earlier), Arthur’s mental health deteriorated. “I got to breaking point, because I’d carried on for years. One day it just got too much.”

“When a parent is sick, they are essentially, through no fault of their own, not reliable. This alone can cause great anxiety for a child. Add to this that the parent then relies on the child, and that child is forced to reach a point of maturity without the groundwork a typical childhood involves. It is a tremendous amount of stress and can impact a young person's sense of identity.” Dr. Jacobson explains.

Unable to wait months for an NHS therapy appointment, Arthur turned to York Carers Centre, a local charity that helped him seek funding for private counselling. Without their support, he believes things would have been a lot worse. “I’ve got one-to-one support, they come with me to meetings, they help me write letters, they check up on me. And there are social activities too. It’s better than it was before.”

I was lucky enough to enjoy a relatively normal teenage existence despite my caring role. I didn't access support, but I often wonder how different things could have been with some extra help at home. The work of carer services is vital for young people but without the necessary funding, these services are struggling to support those who need it most.

Despite legislation being in place to support young carers, austerity measures have taken a toll on children’s services. In the UK, overall funding for local government has fallen by half since 2010 and the Local Government Association (LGA) estimate a £3.1 billion funding gap for children’s services by 2025. Children’s services have not seen budget cuts as severe as other council services, but charities warn that some young carers are not getting the help that they need. In the 2018 Association of Directors of Adult Social Services (ADASS) budget survey, 15 per cent of councils did not feel confident that they would be able to fulfil the assessment duties for carers.

The shift from being the person who is looked after to the one looking after your parent can be fraught with grief, anger and confusion. But amidst all the difficulty, for me it was also a time of solidarity, unconditional love and joy

Trudy Fisher, a service coordinator for RCT, admits the council funded project becomes more stretched every year following cuts to provision – Rhonda Cyonn Taff council reported a budget gap of £6.59 million this year. Her small team of part-time staff work extra hours to ensure that young carers receive round-the-clock support. “We can’t just tell our young carers that we are off-duty if an issue arises out of hours. It’s the goodwill of the staff that keeps the project going.”

When I was a young carer, I often grappled with the resentment I felt at having to look after my parent or younger siblings, and the guilt that came with knowing my mum never got the chance to enjoy the independence that I yearned for. Normal parts of being a teenager, like wanting to fit in and spending time with friends, don’t go away when you care for someone. But they are replaced by something much more meaningful.

Lucy explains how her desire for a ‘normal’ family was always overpowered by her strong relationship with her mother and sister: “I remember watching my friend's mum’s pick them up from school to go out for the evening, and asking myself why my family can’t do that. But then you get home and you realise that even if your life was perfect like theirs, it wouldn’t fit you, because your family is so much better in its own way.”

In speaking to other young carers, I found that despite facing such adversity, they all gained a sense of pride and confidence from their role, and are adamant campaigners for the rights of other young people facing the same challenges.

Despite being just 13-years-old, Oliver is determined to help other young carers. As a member of the Welsh Youth Parliament, he recently gave a speech at the first ever Welsh Youth Parliament assembly, vouching for better assistance for people with disabilities. “Everyone always jokes around that I'm like an old man, I’ve grown up a lot faster than my peers and it does make you more aware and knowledgeable.”

Oliver Davies (middle) and his family

Lucy also credits her extra responsibilities when she was younger to who she is today. “I now have a firm foundation of belief in myself. I know that it doesn’t matter how bad it gets, I’m going to come out on top, because that’s who I’ve been raised to be.”

The shift from being the person who is looked after to the one looking after your parent can be fraught with grief, anger and confusion. But amidst all the difficulty, for me it was also a time of solidarity, unconditional love and joy, found in the fierce, unbreakable resilience our family has, which carried us through our darkest hours.

But young people with caring responsibilities cannot continue to be the ones diagnosing themselves. Young carers need to be at the forefront of social care policy and provision: paid carers are visible in our society, yet a hidden population of young carers have the same responsibilities without access to support. At their most vulnerable and important stages of their lives, children are being forced to grow up a lot faster than they should.

Without charities like RCT, young carers like Lucy wouldn’t have found the independence and confidence to fulfil their ambitions. But above all, she credits her relationship with her mum, and the challenges of her caring role, to the strength of her character: “For every aspect of life I had to help my mum with, there were so many more where she helped me become the person that I am. And without my caring responsibility, there’s no way that I would be who I am, where I am, or going onto doing the things I’m going to do.”

You can contact the Carers Direct helpline on 0300 123 1053 for advice and support with caring issues.