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Our struggles with the system show young carers need urgent change - whoever forms the next government must listen

For as long as I can remember, I have been told that I was “unusually mature for my age” or that I was “Mummy’s extra helper”. Ostensibly, these are lovely, well-intentioned comments by teachers or other parents.  But looking back, I wonder if this shows how easily you can fall into being a young carer without anyone questioning it.

With an election looming, perhaps it’s time politicians and the voters who elect them started doing a bit more questioning about a system that leaves a million children caring for a family member, often with little or no support.

I grew up with my mum and sister, who has a range of disabilities and health conditions. I would support her with physiotherapy, be a sight guide when out in public, or provide emotional support, particularly surrounding upcoming hospital appointments and procedures. My childhood was a happy one – we went through all the stages of bickering, “borrowing” of clothes, and petty arguments that most sisters do – but it wasn’t always plain sailing.

Whilst my friends saw home as a break from school, for me it often felt like the other way round. Dinner conversations often drifted to upcoming hospital appointments, Education, Health and Care plans (ECHP), physiotherapy, seizures, and other day to day stresses as well as worries about the future. And whilst my friends freely made plans to meet up, I had to be more conscious of my time, whether I was needed at home, and always aware that I might need to cancel last minute.

I was lucky to receive support from a wonderful local young carers charity, Centre 33, throughout my teenage years. They helped me to navigate some of the more complex and often conflicting feelings I had, providing me with a space where it was ok to talk through my worries without feeling burdensome for having my own needs too. I was lucky to have it, and I know it. A recent parliamentary inquiry it takes three years on average for a young carer to even be identified by their local authority, and that’s before we even begin to think about the young carers who aren’t identified at all. 

Struggles with the system

Yet I am certain that much of the stress in our household stemmed from one thing in particular: dealing with “the system”. 

Whether this was navigating the complicated world of PIP payments, EHCP plans, realising my mum worked just too many hours to be eligible for Carer’s Allowance (even though this actually left her worse off financially), chasing up hospital referrals, and so much more, I am certain that “the system” is the single biggest cause of overwhelming stress in families like mine. It is not right that I became my sister’s teaching assistant at school, taking her from lesson to lesson in between my own lessons during my GCSE year, helping her get ready for PE at breaktime, making sure she had eaten simply because the Special Education Needs funding could not meet everyone’s needs in my school. It is not right that my mum has continually had to advocate for 19 years for such necessary support that could so easily be taken away at the next review. 

Advocating alone is like a job in itself, and I am angry on her behalf that she has had to do this for her child. 

It is clear that the system needs to change, and I am hopeful that this election will kickstart that. As a first-time voter, I was pleased to see the Liberal Democrats focus on carers and their rights. Valuing paid care workers more and increasing Carer’s Allowance are long overdue steps to turn unpaid family caring into something that is compatible with education or work. 

We need to work on building a society where caring responsibilities are not a barrier to employment, study, or a fulfilled life, but rather something that is supported and championed by the government. I am thankful to Ed Davey for sharing his personal experiences, which has acted as a sort of catalyst for other parties, putting health and social care at the forefront of the election. 

The challenge facing young carers

Yet, after years of feeling let down by politicians, I think I am justified in feeling some scepticism. There are one million of us who feel gaslit by successive governments that, at best, fetishise our role, telling us how inspiring we are without offering any support, or, most often, disregard our role altogether. It is much more convenient to pretend that it doesn’t happen at all than admit that, as Carers Trust has highlighted, there are thousands of children as young as five sometimes caring for over 50 hours a week. Young carers miss an average of 27 school days a year, and the ripple effect of this is huge. Educational sacrifices made in childhood mean it is hardly surprising that by adulthood, they are 38% less likely to obtain a university degree, a statistic that increases to 86% when caring responsibilities exceed 35 hours a week.

It is so validating to see caring as an election topic. But the label “carer” covers such a broad range of experiences that we mustn’t forget the very distinct needs of young carers. These would include a  carers champion in every school, universal access to transitions assessments - which explain how different services for children and adults affect you when you turn 18 -and dedicated support around moving to university or seeking employment. After all, these are hardly radical asks. It has never been clearer what young carers need, especially with the launch of the Young Carers Covenant this year which asked organisations, politicians and others to commit to giving us a fairer future. 

The next government needs to stop turning a blind eye, address some of the uncomfortable truths about our society, and stop letting children carry the burden of the health and social care crisis. Young carers will make up a substantial proportion of future voters. This is a warning to politicians that we will carry our struggles, sacrifices, and injustices to the ballot box. Do not let our cries for support fall on deaf ears.

 

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