25 August 2026
By Aleena Numaan, Senior Research Executive at Thinks Insight and Strategy
Participating in a focus group must be a strange experience. I can only imagine the anticipation and anxiety of sitting in a Zoom waiting room at your kitchen table or on your couch, surrounded by reminders of everyday life, before entering a room full of strangers recruited for the same reason. You are confronted with names like Sam’s iPhone 7, alongside people from very different walks of life, all there to talk about a shared experience that is deeply personal and sensitive.
Thinks Insight and Strategy was recently commissioned by SCIE to co-produce a multi-phased qualitative research project engaging 50 participants to explore their experiences of seeking and receiving care, with the aim of improving fairness within the adult social care system. The research involved people receiving care, from councils, private and unpaid carers, across four local authority areas: Westminster, Dudley, North Tyneside, and Wiltshire. These locations captured variation in geography, local service contexts, and adult social care funding. Participants represented a diverse range of care needs, socioeconomic backgrounds, digital confidence, ethnicities, ages, genders and types of formal and informal support. Everybody took part in an initial private exercise before coming together with other people drawing on care.
Through co-production, we saw the cumulative strain experienced by people receiving care and how stress can compound already complex, chronic conditions. The research reinforced how complex the route to a more equitable social care system can be, and the value of developing solutions with people who experience the system every day.
Breaking an isolated struggle
As the focus group progresses, the tension begins to ease. Strangers become trusted acquaintances, all within the confines of a small screen. Shared experiences create not only alliances, but validation, because what emerged strongly from this research is the way inequity can be lived without ever being named.
Participants begin sharing resources: which support groups are available, what tone to take when speaking to the council, what they spotted on a poster at the GP that might help. During one conversation, a woman realises for the first time that she is eligible for funding, and you can almost see the weight lift from her shoulders. Information is exchanged, phone numbers shared and tips given, all within 30 minutes of meeting. The positive energy that comes from feeling understood propels the discussion forward.
There is something powerful about bringing together people who have been navigating similar challenges alone from their own living rooms. While I am typically one for in-person interaction, moments like these make me grateful for technology’s ability to create connection in what can otherwise be an isolating experience.
Moving through the system can create cumulative disadvantage
Through our research, we found that participants must repeatedly prove their need, coordinate services, chase responses and make sense of decisions, creating an administrative burden that goes far beyond being time-consuming. It can erode their sense of self. Rather than seeing difficulties as features of a complex system, some begin to see themselves as the problem – as a burden or as unknowledgeable, contributing to declining self-worth.
When you are already living with illness or disability that requires you to redefine how you and others see you, navigating a complex care system can add further strain. Our research suggests that the way care is organised and accessed can compound distress and contribute to burnout, with some people eventually disengaging. We heard this in sentiments like, “It’s just not worth it anymore” and “I stopped trying years ago”.
Co-production is more than a ‘nice to have’
A participant living in central London, often assumed to be a hub of information, received life-changing advice from someone in rural Wiltshire who had noticed a poster at their GP surgery. A younger participant learned from an older adult exactly what to ask for when calling the council.
Good care is shaped by financial circumstances, geography and a person’s ability to navigate the system. But these findings are rarely linear. They go beyond what we typically define as inequity and reveal complexities that co-production can help uncover. When people become an important source of knowledge for one another, it also highlights gaps in how information and support are experienced.
Good care is relational and those relationships matter for the duration of a person’s journey through the system. Building trust, respect, listening and continuity from the beginning can help make care feel more accessible and supportive.
Listening to lived experience is not simply about designing better services. It can also help preserve dignity when navigating a complicated system becomes difficult. Co-production is therefore not an optional extra, but an important part of designing and delivering good care.
