The recently published Sayce Review exposes systemic failings in how the UK supports unpaid carers, from unclear Carer’s Allowance guidance to penalties for those juggling work and care. For advisers, it highlights the pressures facing the 1.1 million adults caring for someone with cancer.
Emma Thomson, Consultant at Reframe Cancer, notes that many carers are unaware of their rights under the Carer’s Leave Act and often use annual or sick leave to manage responsibilities. Advisers can play a vital role in guiding employers and clients on insurance and workplace support, helping carers remain financially secure while navigating one of life’s most demanding roles.
Thousands of unpaid carers who were left with huge debts, hit with fines and even prosecuted by the Department for Work & Pensions (DWP) will have their cases reassessed after the damning findings in the Sayce review were published this week.
The UK Government ordered the review into the longstanding failures surrounding the Carer’s Allowance. It found that between 2015 and the summer of 2025, the official Carer’s Allowance guidance was ‘unclear’ and ‘ill-defined’. This led to many carers being unable to properly report their earnings, and the DWP failed to warn carers about overpayments in a timely manner. One in five who claimed Carer’s Allowance and worked part-time were hit with an overpayment penalty between 2019 and 2024, meaning they had to repay huge sums of money, and many were incorrectly convicted of benefit fraud.
It is hard to read through the findings of the report without feeling a sense of utter outrage at how these carers were treated, especially given their contributions to society. Without them, the State would have to step in at a high additional cost to the taxpayer. There is a lack of awareness, understanding and appreciation for how much carers do every day and what expert guidance they should be given in the workplace.
As a cancer specialist organisation, we have seen the impact on cancer carers. There are currently 1.1 million working adults in the UK who are also helping provide daily support to a loved one diagnosed with cancer. As we continue to see an increase year on year in the number of working-aged people with cancer, the number of cancer carers in the workplace will rise. Employers and insurers will see an increasing need to provide expert guidance as they juggle work with the intense daily demands of looking after someone with cancer.
Research we conducted showed on average, working cancer carers will:
- Care for a loved one with cancer, whilst working themselves, for 12 months
- Spend £401 a month on average on monthly expenses such as parking, transport and medical expenses
- Undertake an average of 16 hours per week, providing care as well as working in full and part-time employment. This equates to just over 69 hours a month
- Take off 3.5 days per month to undertake caring responsibilities, that employers are aware of and informed about
However, on average, cancer carers also take an extra 3 days a month using other leave, such as sick pay or holiday allowance. Combined, this means cancer carers are taking 6.5 days a month off work to support a loved one with cancer. There is clearly a concern about the stigma of needing time off to help with caring, which is why they are using up their own annual leave or sick leave, and not disclosing to their employer how much time off they really need to help with their caring role.
Unaware of The Carer’s Leave Act
Concerningly, we found that a large majority were unaware of the Carer’s Leave Act, which came into effect in April 2024. The Act gives carers who are balancing unpaid care with paid employment the legal right to unpaid carer’s leave. Employees can take up to one week of leave every 12 months. A ‘week’ represents the length of time they usually work over seven days. Six in ten (60%) said that they were unaware of the Carer’s Leave Act. More than half of employers (52%) did not tell them about their rights as part of the Act once they told them they were now a carer. If they were fully briefed and knew their rights, they would know what their entitlements were around annual leave, and many would take less time off, using up sick leave and holiday allowances.
The one good thing to come from the Sayce review is that it will shine a spotlight on the role of carers and the hard work they undertake day in, day out, caring for a loved one. Carers often struggle with their own mental health, which could lead to additional time off work if they are not supported. It’s in the interest of employers and insurers to understand the pressures carers face and take action to better help them juggle work and caring duties. Cancer numbers are rising, and the number of working carers will also increase. It’s a growing problem that can’t be ignored.
And then there are the hidden carers. The people who’d never call themselves “carers” but quietly shoulder hours of physical, emotional, practical and financial support every week. They’re doing the work, just without the label or the recognition.
Keep Britain Working
Sir Charlie Mayfield’s Keep Britain Working report calls for stronger workplace support and a system that helps employers and employees manage health and disability well. A key principle is to rehumanise the workplace through honest, constructive dialogue tailored to each person’s circumstances.
Carers need this focus too. While protection policies offer valuable rehab support for people with disabilities, provision for carers remains inconsistent, with most products not specifically designed with carers in mind. It’s why we developed our own carers proposition. We believe it’s time to make sure people have access to a structured programme and specialised guidance, making them feel understood and supported as they tackle one of the biggest challenges they will ever face. It’s clear that improving outcomes for unpaid carers will take all of us: government, insurers, employers, charities and organisations like ours working together.
