What our new research is teaching us about care equity

This matters because inequity in social care is rarely caused by one thing. People’s experiences are shaped by income, geography, age, ethnicity, gender, disability, health condition, digital access, informal support, local services and wider structural pressures. These factors interact and can compound over time.

Why we commissioned the research

The Care Equity Evidence Hub shows that the evidence base on inequity in social care is rich, but spread across many places. When evidence sits in separate silos, it can be harder to see how different barriers connect in people’s lives.

We wanted this research to help bring those issues together through lived experience. Thinks Insight & Strategy used a qualitative and participatory process, including expert input, lived experience engagement and co-creation with people drawing on care and unpaid carers across four local authority areas.

Co-production was not only a topic within the research but also a critical part of the process, through expert input, lived experience engagement, and collaborative development of the work.

Inequity is often experienced as work

One of the strongest messages from the research is that inequity is often experienced through the work people have to do to get support.

People described chasing, explaining, coordinating, proving need, and trying to make sense of unclear decisions. They spoke about uncertainty over who to contact, how eligibility works, where health support ends and social care begins or how to ask for more help when existing support is not enough.

People with more money, confidence, digital access, family advocacy, or professional knowledge may be better able to make the system work around them. People without those resources may be more likely to accept unsuitable support, rely on unpaid care, go without, or stop asking.

For me, this is one of the clearest insights from the research. It moves the conversation beyond unequal access alone. It shows inequity as an unequal burden of work.

People may live inequity without naming it

Another important finding is that people do not always use the language of policy or systems to describe what is happening to them. Most people will not say, “I am experiencing inequity.” They are more likely to say, “I do not know who to ask”, “I feel like a burden”, “I was made to feel difficult”, or “I stopped trying”.

Care inequity is often visible in the gap between what people need and what they feel able to ask for. It shows up in lowered expectations, guilt, repeated effort, reliance on family, and withdrawal from support. These experiences may be described in personal terms, but they point to wider patterns in how care is accessed, organised, and delivered.

That is why lived experience matters. These accounts show how wider patterns of unfairness become personal.

The research captures the experiences of people feeling misunderstood, talked down to, disbelieved, or left to chase support until they no longer had the energy to continue. These are not only individual stories. They show how system design affects trust and dignity, and whether people feel able to seek support when they need it.

Good care is relational

When people described good care, they often talked about relationships.

They valued being listened to. They valued continuity. They wanted professionals and carers who knew them, understood their circumstances and treated them as individuals. They wanted care that helped them maintain dignity and independence, not care that made them feel controlled or reduced to a task.

This is central to equity.

In his speech earlier this week, the Prime Minister described the problems created by the traditional ‘time and task’ commissioning and delivery model, where care provider companies are paid in rigid blocks of time (often 15-minutes) to deliver a specific list of care tasks, such as helping someone get washed and dressed. He said it can be a ‘recipe for quite significant chaos’ when someone’s needs are moderate or severe. The experiences captured in this research help explain this further: care cannot be genuinely person-centred when there is too little time to build trust, understand someone’s circumstances or respond when their needs change.

If someone has to explain their needs again and again, if their condition is not understood, if their cultural needs are missed, or if they cannot build trust with changing staff, then care becomes harder to access and harder to sustain.

Relational care is especially important for people with complex, fluctuating or poorly understood needs. It is also important for unpaid carers, who often become the person holding together information, relationships and decisions across services.

Continuity, trust and being known are not extras. They are part of fair care.

Choice and control are not equally available

Choice and control are core ideas in adult social care. But this research shows how unevenly they can be experienced.

A fair care system cannot rely on people being able to push hard enough, pay privately, or have a family member who can coordinate support. It needs to reduce the amount of work people have to do to get care, and increase people’s power to shape the care they receive.

Seeing the bigger picture

SCIE’s Rainbow Framework helps explain why these findings matter. It shows that care equity is shaped by interacting layers around the individual, including family and informal networks, community, services, systems and wider structural conditions.

The research brings those layers to life.

Geography shapes what support is available. Financial means shape people’s ability to pay for more flexible care. Ethnicity, language, faith and culture shape whether care feels person-centred. Age can shape whether people are talked down to or assumed to be coping. Gender can shape guilt and caring expectations. Invisible, fluctuating or poorly understood conditions can mean people have to re-prove need again and again.

The point is not that these factors act one at a time. They combine.

That is why the report’s strongest contribution may be its account of compounding inequity.

Why co-production matters

This research also points to the importance of co-production.

If inequity is partly about unequal power, then a fairer system must shift power towards people drawing on care and unpaid carers.

That is why care equity was the core theme for SCIE’s Co-production Week this year. Across the week, we asked who gets care, and whether care is fair.

These questions matter because fairness in adult social care means recognising the different barriers people face, reducing the work people have to do to get support, and shaping care with the people most affected.

At the individual level, care should be shaped with people, not simply delivered to them. At the service level, people’s experiences should shape information, access routes, assessments, and reviews. At the system level, people with lived experience need to influence what fairness means in practice.

For practitioners, local authorities, government and researchers, this research is a reminder that care equity is not a separate issue from co-production. If we want to understand who gets care, who misses out, and what makes care fair, we need to listen to people’s experiences and share power in how care is designed.

The Casey Commission’s “Big Conversation”, which gives everyone a chance to have their say on the future of adult social care, creates an opportunity to put these principles into practice. People drawing on care and unpaid carers should have real influence over that conversation, including how reform reduces unequal burdens, strengthens choice and protects dignity.

Want to learn more about care equity?

SCIE is working with local authorities and partners to help build understanding of care equity, strengthen local evidence use, and support practical approaches to fairer social care.

Local authorities interested in learning more about SCIE’s care equity work, the Care Equity Evidence Hub, or related support offers can contact us at insights@scie.org.uk.