Moving in circles: supporting carers navigating the care system (30 June 2025)

Summary

Family members and friends who care for loved ones are the backbone of the UK care infrastructure. There are at least 5 million of these ‘carers’ – vastly more than the 860,000-strong paid care workforce. This report presents new, in-depth evidence of the role played by these unpaid family/friend carers, specifically regarding the ‘indirect’ tasks they perform, such as project management and medical advocacy, and the ways in which they plug gaps in the paid care system. In some cases, these functions could be replaced by improved and better-funded services. In others, the positions of these family/friend carers as long-term loved ones of care receivers provide an irreplaceable utility that deserves recognition and resources.

Content

Challenges carers face:

Carers spent between 6 and 220 hours on ‘indirect’ care tasks over the 12 weeks:

• At the lower end of the range, carers who reported low amounts of indirect care often lacked external support – there was no project management to perform because they were alone and unsupported.
• At the higher end, tasks included supervising and liaising with paid care providers; administrative tasks, including those pertaining to medication, equipment, appointments and benefits; and engaging with their loved ones’ medical professionals.
• A substantial proportion of these activities was necessitated or intensified by poor system design, including poorly implemented digitisation, reactive (instead of proactive) medication and equipment supply processes, and circuitous bureaucratic systems. All these were underpinned by under-staffing at the institutions with which they engaged.

The research reveals a potential misunderstanding about how care functions for family/friends once paid care workers are in place. For some carers, receipt of paid workers marked a transition from hands-on ‘direct’ care to managing the direct care. Others were also providing high amounts of direct care alongside paid workers. Thus, policy-makers and the public should not assume that care provided by workers will remove care provided by unpaid loved ones.

Carers’ long-term knowledge of the care receivers enabled them to ensure:

• appropriate medical treatment by acting as living repositories of their loved ones’ medical histories
• person-centred care by supporting paid care workers to understand their loved ones’ needs and preferences where care receivers were less able to do that themselves.

Carers plugged the gaps in the paid care system by:

• supporting paid care workers when there were too few, or under-trained, staff, particularly when care receivers required 2 people or during staff absences
• stepping in when their loved one’s condition fluctuated in ways which planned services could not accommodate
• providing entertainment and engagement, ensuring quality care beyond the basics.