The Social Care Institute for Excellence (SCIE) uses its evidence and experience to create a fair and equal society, where care maximises people’s choices and removes social inequality.
Earlier this year, SCIE commissioned new qualitative research, carried out by Thinks Insight & Strategy, to better understand how people drawing on care and unpaid carers experience inequities in social care. I worked closely with SCIE, Thinks Insight and Strategy and SCIE’s Co-production Steering Group to review and shape materials at each phase of the research and reporting.
I recognise almost every page of the report, How care inequities shape social care experiences, in my own life and in the lives of people I’ve sat alongside for years. That’s not a comfortable thing to say about a piece of research. But it’s the truth, and I’d rather tell you the truth than pretend this was news to me.
The report is built from fifty people’s accounts of trying to get, and keep, social care support. What it describes is a system that rarely fails people through one big injustice. It fails them slowly, through an accumulation of small ones. Unclear information. Being asked to prove the same need over and over. Being passed between services that don’t speak to each other. Long waits that become a kind of silent rationing. None of these things look dramatic on their own. Together, they wear people down until some of them simply stop asking.
I know that wearing down. I have felt it myself, and I have watched people I care about feel it too, that particular exhaustion of explaining yourself to someone who has already decided what they think before you’ve finished your sentence. The report found that people rarely describe what they’re going through as structural unfairness, even when their experience is clearly shaped by exactly that. Instead, they blame themselves. They feel guilty for asking. They assume someone else is more deserving. They put it down to bad luck rather than a system built without them in mind. I’ve heard that same self-doubt in my own head more times than I’d like to admit, and I’ve heard it from countless people I’ve worked alongside in co-production spaces who were made to feel like a burden for simply needing support.
I’m proud that the report doesn’t stop at describing the damage. It shows what actually helps. Not grand system redesigns, but relationships. A named person who knows you. A carer who stays long enough to be trusted. Someone who listens without needing you to perform your pain to be believed. Every good experience of care in that report comes back to being known as a person, not processed as a case. That’s the whole argument I’ve been making about co-production for years, just proven again from a different angle. People don’t need to be managed. They need to be met.
What we ask for in this report is the same thing I’ve been saying in every room I’ve been given a seat in. Stop asking people to prove their pain before you’ll believe it’s real. Build systems around named, trusted relationships instead of rotating strangers and repeated assessments. Give people control over their own information so they stop having to retell their story to every new professional who walks through the door. Recognise that financial means shouldn’t be the thing that decides whether someone gets dignity as well as support. And take structural failure off people’s shoulders and put it back where it belongs, on the system that created it, not on the person trying to survive it.
Real change starts with the belief that people are the experts in their own lives, and that the closer you let them get to the decisions that affect them, the fairer and more human the system becomes. This report gives that belief an evidence base. I already knew it was true. Now we have fifty more reasons to act on it.
“The people closest to the pain must also be closest to the power. This report is one more reminder of why that has to stop being a slogan and start being how we build things.”
Isaac Samuels, 2026
Read the report: SCIE, How care inequities shape social care experiences (July 2026)
