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Carers Week: Eldercare is the new childcare, and carers need new rights

We need legal rights for people caring for older family members who become ill or disabled, argues Emily Kenway

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Image: Shutterstock

How long do you expect to live? Eighty years? Ninety? Perhaps you’re hoping for the big 100? Thanks to advances in medicine, these aren’t outlandish goals – we now live longer than ever before. But while we benefit from this miracle of our modern world, there’s also a cost: older people need more care.

Already in the UK today, there are at least six million people caring for a loved one who’s long-term sick, elderly or impaired, or all three. That’s around 9% of the population. And it’s only going to increase.

Modern medicine has extended our lives, increasing the number of ‘oldest-old’ (over 85s) and extending the longevity of those suffering from diseases – someone with Parkinson’s can now expect to have the same lifespan as someone without, and dementia patients can survive up to 20 years. This means that many of us may spend more years caring for elderly and sick loved ones than raising children. Eldercare is becoming the new childcare.

But you wouldn’t know it from looking at our social and political arrangements. Consider the workplace. The work world has long been the battleground of a clash between work and care. Parents (mainly mothers) have fought hard to win entitlements that enable them to bear children without detriment to their income or status. That’s why we have the legal right to paid parental leave, which was first introduced in 1975. But it’s not the 1970s now. In a world in which eldercare is catching up to parenting, we need new rights.

Today, if someone you love needs your support – perhaps they become terminally ill or need help after an operation – you have no right to paid leave from work to be with them. You’ll have to choose between your job and love. If you do leave work, you can claim Carer’s Allowance, the benefit available to people who provide care for 35 hours or more each week. But take a glance at the numbers – statutory maternity pay is currently £172.48 per week, while Carer’s Allowance is £76.75. While neither amount is sufficient to meet living costs, the discrepancy is a bald statement of how we recognise and privilege parenting over other forms of care.

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Katy is a casualty of our failure to protect and pay caregivers effectively. She used to be a teacher, a job she really enjoyed. When her father got terminal cancer, she went part-time to help her mum with him. Katy was lucky to be allowed to do that – we have the right to request flexible working, but not the right to receive it, so many caregivers would have quit at that stage. But then things got worse. Katy’s husband was diagnosed with a motor neurone disease. He didn’t need practical help all the time, but there were spells when he struggled and Katy needed to be with him. Eventually, she had to give up working altogether.

That was around a decade ago so, since then, Katy’s been living off savings and paltry benefits like Carer’s Allowance. “When you don’t have a salary any more and that’s what the government says you’re worth,” she tells me, “that has a big effect on your confidence. Financially, I’m screwed.” 

Alongside enforced poverty, caregivers are also subject to outright discrimination. Research by Carers UK in 2020 found that nearly half of caregivers surveyed felt they’d experienced discrimination at work. Once again, where parenting has protections – pregnancy and maternity are protected characteristics under the 2010 Equality Act – the millions of other caregivers are left out in the cold. They must rely on something called ‘associative discrimination’, which means they’re protected due to their association with someone with a disability. But it covers a limited range of scenarios and fails to give caregivers rights to adjustments that help them stay in work. 

Why must caregivers rely on protection by proxy, instead of being a group deserving of explicit rights? Neither parenting nor caregiving are easy. The point isn’t to denigrate the entitlements of the former but to extend them to the latter, so that all care is valued and supported equally. 

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It isn’t solely government with a role to play in this revolution of care. It’s you, too. We need politicians and employers to catch up to the reality of care and recognise that parenting is just one part of a much larger whole. But they won’t act unless we make it a condition of their power. Currently, many caregivers and their groups are fighting for change. These include Carers UK, which has been lobbying for ‘caregiver’ to become a new protected characteristic under the Equality Act, and Katy, who’s started her own campaign called We Care.

But what about you? I’ll bet that if you haven’t been a caregiver yet, you’ve given it little thought. And yet the trends tell us that your future contains care. So don’t leave it up to the people already bearing the brunt of our societal failure to recognise and support care. It’s time we all raise our voices – caregivers past, present or future. Otherwise, like Katy, we’re screwed.

Who Cares book cover

Do you have a story to tell or opinions to share about this? We want to hear from you. Get in touch and tell us more.

Emily Kenway is a writer and researcher. Her book Who Cares: The Hidden Crisis of Caregiving, And How We Solve It is out now (Wildfire, £22). You can buy it from The Big Issue shop on Bookshop.org, which helps to support The Big Issue and independent bookshops.

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