How inequities shape social care experiences

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.

New research commissioned by the Social Care Institute for Excellence (SCIE), published today, Monday 27 July, reveals significant inequities in the amount of work people must do to access, secure, coordinate, and sustain social care.

Drawing on the experiences of people who draw on care and unpaid carers, the research shows how factors like disability, income, where people live, ethnicity, age and gender all affect the care people get. It also shows how problems in accessing care can build up over time: difficulties faced early on can make it harder to get the right help later.

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they deserved care, not wanting to burden family members or the system, fearing that support could be reduced or withdrawn, and feeling misunderstood.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:

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.

About SCIE

The Social Care Institute for Excellence (SCIE) improves the lives of people of all ages by co-producing, sharing, and supporting the use of the best available knowledge and evidence about what works in practice. We are a leading independent social care charity working with organisations that support adults, families and children across the UK.

If you have any questions regarding this release, please do not hesitate to contact Molly Pennington, Press and Media Relations Officer, at molly.pennington@scie.org.uk