While a growing number of working adults balancing employment with caring for a loved one diagnosed with cancer, research found that more than half of employers do not inform employees of their rights when they become cancer carers.
The study, by workplace cancer support firm Reframe Cancer, found that 52 percent of employers do not brief employees on the support available to them. Additionally, 36 percent of respondents said a lack of employer support made them want to change jobs.
On average, cancer carers in employment provide 16 hours of care per week while continuing to work. This amounts to over 69 hours of unpaid care each month, covering tasks such as coordinating medical appointments, administering medication, assisting with daily living activities and providing emotional support.
Reframe Cancer estimates that 1.1 million working adults in the UK are also cancer carers and that this number is expected to rise as cancer rates increase – with four million people in the UK projected to be living with cancer by 2030.
Time off work and financial strain
The research found that employed cancer carers take an average of 6.5 days off work each month to meet their caring responsibilities. Of this, 3.5 days are formally reported to employers, while an additional 3 days are covered by annual leave or sick pay. Based on these findings, Reframe Cancer estimates that the cost to employers in missed working hours could be as high as £8.5 billion per year.
Time off requirements vary depending on the stage of the cancer journey. Respondents reported taking an average of 7 days off work before diagnosis, 7 days following diagnosis, 8 days during treatment and 7.5 days post-treatment.
In addition to lost working hours, cancer carers face significant financial costs. On average, they spend £401 per month on expenses such as transport, medical costs and parking. Male carers reported higher costs, spending an average of £464 per month, while female carers spent £339.
Lack of awareness of the Carer’s Leave Act
The research also found a widespread lack of awareness of the Carer’s Leave Act 2024, which grants employees balancing paid work with unpaid care the right to take up to one week of unpaid leave per year.
Sixty percent of surveyed carers were unaware of the Act before taking part in the study. More than half of employers (52 percent) did not inform employees of their rights under the legislation when they disclosed their role as a carer and 8 percent of respondents were unsure whether their employer had provided this information.
Fifty-two percent of respondents said that no reasonable adjustments had been made to their role after they informed their employer of their caring responsibilities. A further 8 percent were unsure whether any changes had been made, while 33 percent said adjustments had been put in place.
Employer support and HR involvement
More than three-quarters of cancer carers (77%) said that their role as a carer had impacted their work. When asked about employer support, 38 percent of respondents said their employer was very supportive, while 34 percent described their employer as “somewhat supportive”. Fifteen percent said their employer was indifferent, and 7 percent reported receiving no support.
Only 52 percent of cancer carers said they had received specific support from their HR team. Mark Stephenson, CEO of Reframe Cancer, stated that the findings shed light on a gap in employer awareness and action, with employees often feeling unable to disclose their caring responsibilities – which means they time off under annual leave or sick pay instead. If carers were better informed of their rights, he argued, they may be able to manage their responsibilities without using additional leave.
“Cancer rates are increasing by 1.9 percent each year among working-age adults across the UK,” Stephenson said. “As patients look to family and friends for daily support, the number of cancer carers who take on the role while also working full or part time will rise considerably in the coming years. It’s time for employers to really get to grips with and understand the crossroads they are facing here.”
Caring responsibilities and types of cancer
The study found that 36 percent of employed cancer carers were providing care for a parent, while 28 percent were supporting a relative. Fourteen percent were caring for a close friend, and 13 percent for a partner or spouse.
Breast cancer was the most common condition among those being cared for (38%), followed by lung cancer (23%), skin cancer (15%) and prostate or testicular cancer (14%). The timing of caregiving responsibilities also varied, with 49 percent of carers taking on the role after diagnosis, 31 percent during treatment and 14 percent before diagnosis.
With the number of working-age adults affected set to increase, organisations will need to take further steps to support employees balancing work with caregiving responsibilities.