12 February 2025 Association News
The MND Association has given evidence to the Government’s independent review into Carer’s Allowance overpayments, which have affected carers in the MND community.
The committee was announced last October by Work and Pensions Secretary Liz Kendall MP, and is being led by Liz Sayce OBE, the former Disability Rights UK Chief Executive.
It has been investigating causes, impacts and potential solutions into the overpayments, which was revealed last year by The Guardian.
As of May 2024, 134,800 claimants were in debt to the DWP due to overpayments with a total value of £251m, as previously stated by the former Conservative government.
We have heard firsthand that people with MND and their families have been directly caught up by overpayments of the allowance.
Overpayments often occur due to a carer earning over the eligibility limit or reaching pensionable age, with some now forced to pay back thousands.
The Association first raised the issue with Sir Stephen Timms, Minister for Social Security and Disability, in November 2024.
Our Chief Executive Tanya Curry gave evidence to the committee on 5 February, citing examples of MND carers who have been forced into repaying large sums due to the DWP error.
One person, whose wife has MND, received a letter from DWP saying he owed £2,400, without any clear explanation of how the debt accrued or how to resolve it.
Another, who cared for her husband who had MND, received a demand from the DWP to repay four weeks of Carer’s Allowance shortly after his death.
The overpayment recovery process failed to recognise the emotional and financial strain on carers, particularly those looking after individuals with terminal conditions like MND.
The committee is expected to deliver its findings and recommendations to ministers by Summer 2025.
Tanya Curry, Chief Executive of the MND Association, said: “We have set out clear, tangible changes that the DWP can enact to prevent these overpayments from happening.
“Improved monitoring and communications and a review into the impact of fluctuations in earnings are just two factors we have raised in our submission.
“To punish carers for making a genuine mistake, while trying to look after their loved ones in the most difficult period of their lives, is not only wrong but downright cruel.
“We are grateful to have been asked to address the committee and look forward to a serious discussion about reforming a broken system.”
According to our 2024 Carers Survey, 81% reported dipping into personal savings or retirement funds to manage, with 64% of these carers using over £2,000 in the past year alone.
Shockingly, almost one quarter (23%) of carers told us they have gone into debt to cover care-giving costs, with half (55%) of those incurring more than £2,000 of debt in the previous year - or in a previous year when caring.
The combination of overpayment demands, and rising disability-related expenses, paints a poor picture of financial instability, with many in our community already under immense emotional and physical strain.