New in-depth insight from Reframe Cancer has for the first time shone a spotlight on the 1.1 million working adults in the UK who are also cancer carers, helping provide daily support to a loved one diagnosed with cancer.
Reframe Cancer surveyed 442 cancer carers3 across the UK who are also in full and part time paid employment. The findings indicate that on average the carers who took part in the survey have been working and simultaneously caring for a loved one with cancer for one year (12 months).
They are spending 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 of care given by carers whilst they continue to work at the same time. The care provided can be far reaching and include daily practical, physical, medical and emotional support. This can include travelling to and co-ordinating medical appointments and cancer treatment sessions, administering medicines and collecting prescriptions, as well as helping with daily living tasks such as cleaning, bathing and feeding as well as housework and help with paying bills.
Caring role
The research indicates that the primary caring role is for a parent (36%), followed by a relative (28%), close friend (14%) then partner or husband or wife (13%). Breast cancer is the main cancer where a carer is being used (38%), followed by lung cancer (23%), skin cancer (15%) then prostate /testicular cancer (14%). Whilst most carers take on the role after a cancer diagnosis has been given (49%), 31% take on the role during treatment and as many as 14% take on the role before diagnosis.
Time off work
Over the course of a month the average time carers take off work to undertake caring responsibilities is 3.5 days that employers are aware of and informed about. Additionally the carers who were surveyed said that they take an additional 3 days 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, this is before they take any time off for their own needs or sickness for example. Looking at this average time off that is taken, it is estimated this could be costing employers £8.5 billion1 a year in missed hours.
When looking at the different stages of the cancer journey, carers say they take different amounts of time off work at different stages of the cancer journey, with the most time taken off during treatment:
They are also accruing monthly costs, with carers saying they spend £401 a month on average on monthly expenses such as parking, transport and medical expenses, this increases to £464 a month for men, whilst women spend an average of £339.
The Carer’s Leave Act
Concerningly a large majority of carers that were surveyed 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' representing the length of time they usually work over seven days. Six in ten (60%) cancer carers that were surveyed were unaware of the Carer’s Leave Act 2024 before they did the survey. 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, with 8% saying they were unsure. Alarmingly, 52% were either unsure or said no reasonable adjustments had been made to their workplace role when their employer found out that they were also a cancer carer, 33% said changes had been made.
Impact on work and employer support
More than seven in ten employees (77%) said that being a carer has impacted their work. Whilst 38% of cancer carers that were surveyed said their employer was very supportive when they told them about their additional role and responsibilities, (34%) said they were ‘somewhat supportive’, 15% were indifferent and 7% were not supportive at all. More than six in ten (65%) of cancer carers say a dedicated cancer carer programme of support as an employee benefit would help them with their combined role of employee and carer.
Mark Stephenson, CEO Reframe Cancer commented: “The findings show the real depth of the daily demands and financial impact working adults are dealing with when also providing care for a loved one with cancer. They are spending an average of 16 hours a week providing caring support, which can cover everything from travelling to treatment sessions, helping with washing and bathing and making sure bills are paid and medication is taken on time. It is therefore easy to see why so many carers take time off from their job every month to juggle what needs to be done. There is clearly a concern about the stigma of needing time off to help with caring however, as they are also using up their own annual leave and sick leave so that they don’t disclose to their employer how much time off they really need to fulfil their duties. This is made even worse by the fact that over half of carers (52%) say they are not being made aware of the support they are able to receive under the Carer’s Leave Act. If they were fully briefed and knew their rights, many would probably take less time off using up sick leave and their holiday allowance.
Cancer rates are increasing by 1.9% amongst working age adults across the UK4. As patients look to family and friends to provide extra daily support, the number of cancer carers who take on the role whilst also working full or part time across the UK will rise considerably in the coming years. It’s time for employers and insurers to really get to grips with and understand the crossroads they are facing here. With 65% of cancer carers saying it would be easier for them if a dedicated programme of support were offered to them as an employee benefit, we think this figure will only rise as cancer rates continue to increase. Reframe Cancer has extensive experience in supporting cancer carers, and this research is helping inform the development of an improved proposition.”
Roy McLoughlin, of the Protection Distributors Group commented: “I think what is clear is that the number of working age adults who will take on the role of caring for a loved one with cancer over the coming years will increase dramatically. Cancer cases are rising, worryingly in younger people, and the help patients need such as attending hospital appointments as well as other practical and emotional support, means more working adults will take on the role of being a carer. If they are using holiday and sick leave to do this, it is unsustainable. I would like to think that employers and insurers can work together to support this growing group of people at what is a very difficult time in their lives.”
Notes
1. Calculation is forecast based on data from Macmillan Cancer Support, ONS data and Reframe Cancer expert insight:
2 Macmillan: cancer rates forecast to hit 4 million in the Uk by 2030 https://www.macmillan.org.uk/about-us/what-we-do/research/cancer-statistics-fact-sheet
3 Research undertaken by Opinium between 16th Jan and 6th Feb 2025 amongst 442 employed cancer carers
4 World Cancer Research Fund