Unpaid Carers Spend Up To 220 Hours Managing Care System Bureaucracy, Major Study Reveals

A groundbreaking new study, Kenway, E. (2025) Moving in circles: supporting carers navigating the care system. York: Joseph Rowntree Foundation, by author, doctoral researcher and former carer Emily Kenway, has exposed the hidden burden placed on unpaid carers, revealing they spend between 6 and 220 hours over just 12 weeks navigating bureaucratic systems that should be supporting their loved ones.

The research, published by the Joseph Rowntree Foundation (JRF), tracked 16 carers across England and Wales who kept detailed diaries of their experiences for three months before participating in in-depth interviews.

The study found that carers are performing extensive “indirect” care tasks including supervising paid care providers, managing complex administrative duties around medication and equipment, and advocating for their loved ones with medical professionals. Many of these time-consuming activities were directly caused by poor system design, including problematic digitisation, reactive rather than proactive supply processes, and circuitous bureaucratic systems hampered by chronic understaffing.

“This week has been an ongoing nightmare. There is no continuity of care. It is exhausting and stressful,” wrote Norman, who cares for his wife, in his diary. “The wear and tear of just trying to cope with looking after my wife and then dealing with the NHS is exhausting. I feel like screaming.”

The Real Cost of ‘Flexibility’

 The research challenges assumptions about what happens when paid care workers are brought in to support families. Rather than reducing the burden on unpaid carers, the study found that many simply transitioned from hands-on care to managing the direct care provided by others, whilst some continued providing high levels of direct care alongside paid workers.

For employed carers, this created what researchers described as an “unsustainable juggle of work and care masked as ‘flexibility’ and reliant on uncodified goodwill from employers.”

Emily, who cares for her 26-year-old daughter with Chronic Fatigue Syndrome, explained the constant uncertainty: “We have reduced our lives, we’ve distilled it down to the lowest level of everything really… The hardest part of her condition is not knowing at any point whether it will be safe to leave her alone even for a short while and that makes it impossible to make any plans.”

Plugging Critical Gaps

The study revealed how unpaid carers are effectively propping up the paid care system by stepping in when there are staff shortages, supporting under-trained workers, and providing person-centred care that goes beyond basic needs. Their long-term knowledge of care receivers enables them to act as “living repositories” of medical histories and help paid workers understand individual needs and preferences.

Philippa, 86, who cares for her 60-year-old son with brain damage, captured the frustration many feel: “I wish that we did not move in circles, constantly reinventing all the evidence of months ago! Where did spare time go?”

The research also highlighted the mental health support role that carers play, often without recognition from medical professionals. Josie, caring for her 16-year-old daughter, described the challenge of maintaining contact with services: “If you don’t keep on and on, they just disappear. And we’ve had that over the last few years. People coming in and offering help… and then all of a sudden they’re gone.”

Preference for Family Care

Perhaps most significantly, nine out of 15 carers reported that their loved ones preferred to receive care from family rather than paid workers. This preference is shaping care arrangements but is rarely acknowledged in policy discussions.

Lisa’s experience caring for her mother illustrated the complexity of introducing paid workers: “Mum had a new live-in care worker [last week] as she is difficult to manage… This took hours of phone calls to unpack the situation… I was left panicked and mentally exhausted, I had spent a whole afternoon on the phone again.”

A System in Crisis

The JRF report presents a damning assessment of the current system, describing it as “fragmented, under-resourced and unable to accommodate the material complexity and unpredictability of caring needs.” The researchers emphasise that without unpaid carers, the UK health and care system “simply does not function.”

Lead researcher Emma Kenway argues that any future care policy that omits the role of unpaid family and friend carers “will fail to understand how care occurs and what family/friends do therein.”

Eight-Point Reform Programme

 The report sets out eight detailed policy recommendations, including introducing ‘carer navigators’ in medical institutions, statutory carer impact assessments for new policies, rapid response units for when carers themselves become ill, and moving towards a four-day working week to free up time for care.

Most controversially, the report calls for Carer’s Allowance to be dramatically increased from its current rate of around £2.40 per hour for those caring 35 hours per week, potentially matching paid care worker wages.

The researchers stress that meaningful reform requires three preconditions: evidence-based Treasury funding for health and social care, an end to the “groundhog day” approach of unfunded promises, and ensuring the planned National Care Service includes provisions for unpaid carers alongside paid workers.

With at least 5 million unpaid carers in the UK vastly outnumbering the 860,000-strong paid care workforce, the study argues that recognising and properly supporting these family and friend carers is not just morally imperative but essential for a functioning care system.

The full report, “Moving in circles: supporting carers can be found here