"I am self-employed and receive payment in chunks, which prevents claiming. I have taken the difficult decision to try and survive without much work but am racking up debt and frightened I will lose my home. I dare not claim in case work is offered and I am then forced to pay it back. I have cancelled so much from my expenses and eat once a day now. Dreading winter."
That is one of 665 responses Carents received when the government asked what carents need from Carer's Allowance reform. Today we submitted the full report - read more below on what the report covered or head here to read it in full.
Who took part
665 people responded to our open survey in August 2026. They are, in the main, adult children in their 40s, 50s and 60s, supporting parents in their 80s and 90s. Many of the respondents are still working, and many are approaching or past retirement age. Several are managing the care of more than one person at once.
A third currently receive Carer's Allowance. A further 32% do not qualify under the current rules, most because they earn too much, have reached pension age, or cannot meet the 35-hour caring requirement in a way the system recognises. A tenth have not yet looked into whether they could claim at all.
Together, these figures describe not just a community of people receiving a benefit, but a much larger population navigating a system that often fails to reach them. We asked them about the earnings rules, the application process, and what they would change. They told us more than we expected, and in more detail.
Key Stats
665
carents told us what they need from Carer's
Allowance reform
23%
have turned down work or reduced their hours
because of the £204 weekly earnings limit
42%
find the Carer's Allowance rules confusing or
very confusing
£2.47
per hour is what Carer's Allowance works out
to at the minimum qualifying 35-hour commitment
99+
responses raised the pension-age exclusion,
caring that receives no recognition at all
10
specific asks made to government, drawn
directly from what our community told us
Six themes
Six issues came through consistently across all 665 responses.
1. The earnings cliff
22% of respondents have turned down work, reduced their hours, or limited their income because of the £204 weekly earnings threshold. This is how the earnings cliff works: earn a single pound over the limit, and you lose the entire allowance.
Carents described turning down extra shifts, declining offers of more work, and in some cases choosing not to claim at all, because the risk of crossing the line outweighed the benefit of working.
"I worked shifts in a cafe and due to staff shortages was offered more shifts. It was a temporary situation so I declined because I did not want to risk going over the threshold."
For self-employed carents, the problem is compounded as income that is unpredictable does not map onto the weekly threshold. Several respondents described choosing not to engage with the system because the risk of an overpayment demand, arriving months or years later, felt too significant.
2. The pension-age exclusion
This came up in 99 or more open-text responses. When a carent reaches state pension age, Carer's Allowance stops, even though the carenting continues.
An 80-year-old caring for a 93-year-old husband, a 68-year-old couple supporting a 97-year-old mother. Neither of those cases qualify. The age at which carenting can become most intensive is the age at which the benefit stops recognising it.
"I am 80 years old, looking after my 93-year-old husband. I have been doing this for the last seven years. The work does not stop."
3. A system few can navigate
42% of respondents find the rules confusing or very confusing. A further 10% did not know that earnings affected their allowance at all. Several described giving up on the application or choosing not to claim rather than risk getting it wrong, only to find out later that they had been eligible all along.
When 49% of respondents specifically mentioned wanting a free online calculator, and 62% mentioned wanting a telephone helpline, the message from our community is clear: the system is not giving people what they need to navigate it.
4. A rate that does not reflect reality
Carer's Allowance stands at £86.45 a week in 2026/27, which works out at £2.47 an hour for the minimum qualifying 35-hour caring commitment. Over 146 responses called explicitly for an increase. The words carents used to describe the rate are telling: "derisory", "a pittance", "not enough to survive on."
For those relying on it as a primary income, the gap between what the allowance provides and what carenting costs is not abstract. It is a financial reality that shapes every decision about work, about rest, and about what carents allow themselves to need.
5. The overpayment scandal's chilling effect
44 respondents described receiving unexpected DWP letters about overpayments. Many more referenced the scandal when explaining why they chose not to claim, or why the application process felt too risky to attempt. Two years on from the initial reporting, the prospect of a demand arriving months or years later, for an error the carent did not knowingly make, continues to deter people from a benefit they may be entitled to.
6. Universal Credit: a system that does not talk to itself
138 respondents raised the interaction between Carer's Allowance and Universal Credit. The two systems are administered separately and, in practice, fail to share information reliably. Carents described receiving overpayment demands they did not cause, arising not from their own error but from a failure of the two DWP systems to communicate with each other.
"They had not been communicating and I had been receiving too much. It will be taken back monthly, through no fault of my own, leaving me short every month."
What we asked for
On the basis of everything our community told us, Carents made ten specific asks to government:
-
Replace the earnings cliff with a meaningful taper
-
Raise the earnings threshold substantially, and index it annually
-
End the pension-age exclusion
-
Build a free online calculator
-
Fund a properly resourced helpline
-
Commission an independent review of the weekly rate
-
Fix the Universal Credit interface
-
Address the overpayment scandal fully and transparently
-
Reform the 35-hour threshold to reflect how carenting actually works
-
Invest in proactive information, so that eligible carents find out what they are entitled to before the system catches them out
The full submission, including the detail behind each ask, is available to read here.
What happens next
The government will consider all submissions before publishing its response. We cannot predict what they will decide but what we can say is that 665 carents took time out of lives that are already stretched thin to put their experiences on the official record.
If you want to stay informed as the government's response develops, sign up to the Carents newsletter or join us in the Carents Lounge. We will share what we hear with our community as we hear it.
Were you one of the 665? Thank you. Your words are now part of the official record of what carents in this country need from this benefit.
If you were not, and you are trying to work out whether Carer's Allowance applies to your situation, this guide is a good place to start. And if you want to talk to people who understand what navigating this can feel like, the Carents Lounge is there.
