Imagine if your home were engulfed in flames and, upon calling emergency services, the operator suggested you attempt to extinguish the fire yourself. This scenario illustrates the strained resources and high demand faced by emergency services, which increasingly depend on volunteers. Similarly, consider a situation where your child’s math teacher is unavailable, and the headteacher texts you asking if you can leave your job to teach the class algebra. After all, it’s family, so why shouldn’t you help out?
This may sound absurd, yet it reflects the reality for nearly 6 million individuals in the UK who serve as unpaid caregivers for relatives who are ill, disabled, or elderly. While we may be shocked by stories of DIY dental work and patients crowdfunding for surgery due to NHS waiting times, the expectation for family members to fill the gaps in the social care system has become normalized over time.
The situation continues to worsen. With an increasing need for care and stagnating resources, 1.9 million people in England alone provided what is classified as “full-time” care—defined as 35 hours or more—during the 2023-24 period, representing a 70% increase compared to two decades ago. Many others juggle caregiving responsibilities alongside their jobs: dropping children off at school, working at their office, and then assisting elderly parents with daily tasks such as bathing and eating.
We can refer to these individuals as the nation’s “ghost workforce,” a growing contingent of unpaid caregivers, including cooks, nurses, cleaners, and physiotherapists, who tirelessly labor behind closed doors without recognition.
Nessa, soon to turn 60, exemplifies a member of this ghost workforce. Instead of contemplating retirement, she worries about who will care for her son, Jai, who is 36 years old and suffers from autism and multiple physical disabilities that render him mostly bedbound and in constant pain. Since the local authority cut Jai’s care package in 2017 during a budget review, Nessa has taken on the role of his sole caregiver.
During our conversation over the Easter bank holiday, while many enjoyed their time off, Nessa was engaged in her continuous caregiving duties, assisting Jai with mobility, administering medications, and tending to his bleeding ulcers. “I haven’t had a break in nearly 30 years,” she reveals.
Nessa herself is disabled, battling osteoporosis along with severe muscle and ligament damage. The physical demands of her caregiving role mean that she can hardly walk without assistance and often struggles to leave her home. Frequently, she doesn’t get to bed until 3 AM and sometimes goes several days without a meal. “Extraordinary things are expected of you, and you can only rise to the challenge,” she states. “That’s the nature of caregiving.”
In recognition of her remarkable efforts, the government’s compensation amounts to £86.45 per week in carer’s allowance. Nessa calculates that she dedicates 133 hours each week to caring for Jai, translating to an effective hourly wage of just 65 pence.
This Sunday marks the 50th anniversary of carer’s allowance. When it was first introduced in 1976 as the invalid care allowance, it provided just £7.90 per week, and married women like Nessa were ineligible. Over the years, some advancements have been made: women, who are still more likely to be caregivers than men, can now qualify for the benefit regardless of their marital status. Additionally, Scotland has established its own version of the benefit, and carer’s allowance now serves as a “passport” to other forms of assistance, such as housing benefits.
However, the main rate of carer’s allowance has barely kept pace with inflation over the past five decades, with only modest increases that fail to align with the rising cost of living or wages. Research from Carers UK suggests that if carer’s allowance had kept up with wage growth over the years, today’s caregivers would be receiving an additional £160.46 per month on average.
The implications of this financial shortfall are stark: 62% of those receiving carer’s allowance live in poverty. Moreover, many caregivers do not receive this support due to stringent eligibility criteria. For instance, child caregivers—an unfortunate term that legitimizes the unacceptable—only qualify for the benefit once they turn 16. Many adults are denied the allowance because they do not meet the required hours of care, earn above the income threshold, or the person they care for does not meet the necessary social security qualifications. This is why the official designation for family caregivers is “unpaid.”
At the same time, the government benefits significantly from this unpaid labor: family caregivers provide services valued at over £184 billion annually in the UK, a figure that has risen by nearly a third since 2011, surpassing three-quarters of the total NHS expenditure.
This issue extends beyond mere financial implications; it encompasses the scale of work expected from caregivers and the conditions under which they operate. Humans inherently care for their families and often seek little in return. As Nessa articulates, “I care for someone I love, so it’s a sacrifice I’m willing to make.”
However, the willingness of many to sacrifice their health and income for loved ones does not absolve the modern state from its responsibilities. Moreover, it should not deny disabled or elderly individuals the right to choose who provides their care.
The ongoing reliance of successive governments on unpaid caregivers can be viewed as an exploitation of familial love, where one of humanity’s most instinctive impulses—to care for family during times of illness or old age—is leveraged to save the state money, often with little consideration for the human cost involved.
The recent scandal surrounding carer’s allowance, where numerous caregivers were falsely accused of fraud, exemplifies the neglect and even disdain the government shows towards those it should be supporting. As a government-commissioned review into adult social care progresses, and as the population continues to age and require more care, it is imperative to reassess the role of family caregivers. How much can society realistically demand from individuals, and what obligations does the state have? What financial support is warranted for the millions who sustain the care system?
