A growing number of adults are balancing work with caring for loved ones with cancer. However, research has found that over half of employers fail to inform their employees about their rights as cancer caregivers.
Reframe Cancer’s study found that 52 percent employers don’t inform their employees about the help they can get. A lack of support from employers also led 36 percent of respondents to want to switch jobs.
In average, cancer caregivers in employment provide an additional 16 hours per week of care while continuing to work. Over 69 hours are spent each month on unpaid care, including coordinating appointments, administering medications, helping with daily activities, and providing emotional support.
Reframe Cancer estimates 1.1 million adults who are working in the UK also care for cancer patients. This number is expected rise with the increase in cancer rates. Four million people will be living with cancer in the UK by 2030.
Financial strain and time off work
According to the research, employed cancer caregivers take on average 6.5 days per month off from work in order to fulfill their caring duties. The research found that employed cancer carers take an average of 6.5 days off work each month to meet their caring responsibilities. 3.5 of these days are reported formally to employers while the remaining 3 are covered by sick leave or annual leave. Reframe Cancer, based on its findings, estimates that employers could incur a cost of up to PS8.5 billion in lost working hours per year.
The length of time off required depends on where you are in the cancer journey. The average number of days taken off by respondents was 7 before diagnosis, 7 after diagnosis, 8 during treatment, and 7.5 post-treatment.
Cancer caregivers face financial costs in addition to the lost hours of work. They spend an average of PS401 per month for expenses like transport, parking, and medical costs. The average monthly cost for male carers was PS464 compared to PS339 for female carers.
Carer’s Leave Act: Not everyone is aware of it
The research found that many people were unaware of the Carer’s Leave Act of 2024. This law allows employees who balance paid work and unpaid care to take up to a week of unpaid time per year.
60 percent of carers surveyed were not aware of the Act prior to taking part in the survey. Over half (52%) of employers did not inform their employees of their rights as caregivers when they revealed their role. 8% of respondents weren’t sure if their employer provided this information.
52 percent of respondents stated that their employers had not made any reasonable adjustments to their roles after they told them about their caregiving responsibilities. Another 8 percent of respondents were unsure if any changes had taken place, while 33 per cent said that adjustments had taken place.
Supporting employers and HR involvement
Over three quarters (77%) of cancer caregivers said that their role has impacted their job. Respondents were asked to describe their employer’s support. 38 percent said that their employer is “very supportive”, while 34 percent called their employer “somewhat supportive”. 15 percent of respondents said that their employer is indifferent and 7 percent report receiving no support.
Only 52 percent of cancer caregivers said that they received support from their HR department. Mark Stephenson CEO of Reframe Cancer stated that these findings revealed a lack of employer awareness and action. Employees often feel unable to disclose caring responsibilities, so they take time off on annual leave or sick-pay instead. He argued that if carers knew their rights, they could manage their responsibilities with less leave.
Stephenson stated that “Cancer rates in the UK are rising by 1.9 per cent each year for adults of working age.” As patients turn to their family and friends daily for support, the number cancer caregivers who work full-time or part-time will increase in the next few years. It is time that employers grasp the situation and take action.
Cancer types and their associated care responsibilities
In the study, 36 percent of cancer caregivers were employed to care for their parents. Another 28 percent supported a family member. 14 percent of cancer caregivers were caring for close friends, while 13 percent cared for their partner or spouse.
The most common cancer among those receiving care was breast cancer (38%). This was followed by lung or skin cancer (23%), prostate/testicular cancer (14%), and then skin cancer (15%). Caregiving duties were also given at different times. For example, 49 percent of caregivers took on their role after diagnosis. Another 31 percent did so during treatment, and another 14 percent began before diagnosis.
Organisations will need to do more to help employees balance work and caregiving responsibilities, as the number of adults in working age affected is expected to grow.
