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An open letter by Carers UK, signed by 108 campaign groups and charities, including Epilepsy Action, is calling out “fundamentally unfair” government rules leaving thousands of carers with debts of up to £20,000.
Around 144,000 carers are facing outstanding repayments due to what have been called “cliff-edge” rules limiting how much carers can earn from part-time jobs while also being able to claim Carer’s Allowance benefit.
Of these, 9,000 carers are unpaid and trying to juggle working and caring at the same time.
People with epilepsy may need a carer if their seizures are frequent and uncontrolled. Additionally, epilepsy can come with other conditions, such as mental health problems, autism and learning disabilities, which could make it even more likely a person may need support from a carer.
An independent review into the overpayment debts carers are facing, announced in October 2024, is being led by Liz Sayce OBE.
The letter to the Secretary of State for Work and Pensions, Liz Kendall, is urging the government to “halt the creation of new Carer’s Allowance overpayment debts until the independent review has concluded and its recommendations are implemented”.
According to Carers UK, Carer’s Allowance of 81.90 a week can be claimed if you spend at least 35 hours a week caring for someone. But you can only earn £151 a week to claim this benefit, and earning even £1 more means you have to pay back your weekly carer’s allowance in full.
This could mean that people earning £1 more than the £151 limit, would have an extra gain of as little as £52 a year, but be forced to repay £4,258.80.
A Guardian investigation has found that carers have racked up thousands of pounds of debt because of how strict the rules are and because the Department for Work and Pensions (DWP) didn’t promptly notify carers of overpayments.
The letter added: “This cliff edge often forces carers to choose between poverty and debt. Many already struggle financially and these debts impact entire households, including children and disabled family members.
“Carers make an invaluable contribution to society. We want the system to reflect their worth, rather than leaving them in debt for trying to balance paid work and unpaid care.”
Are you a carer to someone with epilepsy? Have you been affected by the carer overpayment debts scandal? Get in touch and share your experiences: press@epilepsy.org.uk
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