Inequities Shape Social Care Experiences Research Reveals
As the government shapes the future of adult social care through the Casey Commission and plans for a National Care Service, new research has highlighted stark inequalities in the way people access and navigate the care system.
A study commissioned by the Social Care Institute for Excellence (SCIE), published today (27 July), reveals that the effort required to access, secure, coordinate and maintain social care varies significantly depending on factors including disability, income, geography, ethnicity, age and gender.
Drawing on the experiences of people who use care services and unpaid carers, the report warns that barriers encountered early in the care journey often accumulate over time, making it increasingly difficult for individuals to obtain the support they need.
The findings raise important questions about what fairness in social care should mean.
The research shows that inequity in adult social care is frequently experienced as an unequal burden of work, going beyond differences in access or provision between areas. What this research adds is an understanding of how inequities accumulate across people’s journeys through adult social care. People did not usually experience geography, income, disability, ethnicity, digital exclusion or system complexity as separate issues. These factors interacted over time, with each barrier making the next stage of finding, accessing and sustaining care harder.
Participants described having to repeatedly explain their circumstances, chase information, coordinate support, prove need, navigate unclear processes, and challenge decisions. These experiences were often felt as stress, frustration and fatigue.
The research also highlights that the system places substantial demands on people and unpaid carers, but those demands are not equally manageable. People with money, confidence, digital access, family advocacy, or professional knowledge are often better placed to overcome them and can shape support around their needs. Others are more likely to accept unsuitable support, rely on unpaid care, go without support altogether, or disengage from services.
The findings also reveal a striking emotional dimension to inequity. Participants spoke about worrying whether they deserved care, not wanting to burden family members or the system, fearing that support could be reduced or withdrawn, and feeling misunderstood.
Gerard Crofton-Martin, Interim Chief Executive of SCIE, comments:
“As the government considers the future of adult social care through the Casey Commission and the development of a National Care Service, questions of fairness, consistency and equity are becoming increasingly important.
“Our new research demonstrates that when it comes to care, choice and control are not experienced equally. This means that good quality care remains out of reach for many people, leaving them with unmet needs.
“People told us what would make a real difference to their lives: a named point of contact, greater continuity and consistency of carers, clearer information, better coordination between services, more consistent provision between areas, investment in the workforce, and greater use of trusted community organisations and culturally and linguistically appropriate support.
“Their experiences should help shape the policy solutions needed to build a fairer National Care Service.”
Participants were also clear about what good care looks like. They valued being listened to, being known as an individual, continuity in relationships, trust, and support that reflects their lives, preferences and goals. These relational aspects of care were consistently associated with better experiences and greater feelings of control.
The research points towards several priorities for policymakers, commissioners, providers and system leaders. Participants’ priorities included:
- a named point of contact who can help people navigate the system
- greater continuity and consistency of carers
- clearer and more proactive information about eligibility and available support
- better coordination and information-sharing between services
- more consistent provision between areas
- investment in workforce pay, skills, stability and retention
- greater use of trusted community organisations and culturally and linguistically appropriate support.
These measures will ensure the care system works for the people who use it. They should be embedded into a future National Care Service.
A National Care Service will need infrastructure that supports equitable access to care for everyone. It will need well-integrated systems, improved co-ordination, a sustainable and supported workforce, and more accessible processes for people to navigate. Effective regulation, monitoring, and improvement will require better data on people’s experiences and outcomes, alongside meaningful co-production, so that inequities can be identified and addressed across the whole care journey.
