How the Scottish Government drove a wedge between care experts and the cared for
Mark Smith and Marion Macleod from Common Weal’s Care Reform Group discuss their latest academic paper on how the Scottish Government overused the “lived experience” of cared for people to shield themselves from expert advice about the National Care Service.
Common Weal’s Care Reform Group was heavily involved in debates about the Scottish Government’s plans for a National Care Service (NCS), which have now hit the buffers. We were, broadly, in favour of a NCS, although critical of the Government’s proposals and its approach to following these through. From the outset, the NCS was lauded as being built around the voices of ‘lived experience’. When the proposals started to fall apart at the seams, it was to ‘lived experience’ that the Government turned to try and salvage them.
The move over recent decades to include service users’ voices in policy formulation was in response to real problems: professionals often dominated decision-making, and people receiving services were treated as objects of intervention. Narratives of lived experience helped expose injustices and power imbalances. We are not arguing against listening to people who use services – to do so is a moral and democratic imperative. Our critique is directed at how the concept of lived experience has been coopted and over‑claimed within policy.
The language of ‘participation’, ‘empowerment’ and ‘user involvement’ is often unclear. It can reflect divergent ideological agendas - managerialist, rights-based, neoliberal and consumerist. At the same time, trust in traditional authority and expertise has declined, creating fertile ground for alternative forms of knowledge, particularly emotionally powerful personal testimonies. This can inhibit critique - questioning someone’s personal experience is difficult, precisely because it is personal. However, the turn towards lived experience needs to be interrogated, especially when it risks being co-opted to push through policies in the face of arguably more robust evidence.
It was with this in mind that we set out to interrogate how the idea of lived experience has emerged in policy discourse and has become a cornerstone of Scottish Government policymaking. This resulted in an article, three of the authors of which are involved with Common Weal, published last week in the journal Scottish Affairs, ‘The Rhetoric of Lived Experience in the Scottish Government’s Policymaking’
The turn to ‘lived experience’ needs to be understood against a broader narrative of democratic renewal and community empowerment in Scotland over the past 20 years. For example, The Christie Commission (2011) and the What Works Scotland initiatives promoted cross‑sector partnerships and citizen involvement, contributing to claims of a distinctive ‘Scottish approach’ to policymaking.
But as these participatory ideas became institutionalised they became politicised; simple slogans and buzzwords gained traction. Vague but appealing terms were declared ‘cornerstones’ of policy. Their very vagueness makes them politically useful. ‘Lived experience’ has now become such a cornerstone for the Scottish Government, especially as it seeks to display progressive credentials. This is evident in the Government’s ‘Equality Outcomes for 2025–29’, where “Lived Experience and Participation” is framed as central to efforts to address social problems like inequality and exclusion. How this is to happen is not explained - no mechanisms or metrics are offered for how listening to these voices will reduce inequality.
The scope of ‘lived experience’ has expanded from policy participation into research, professional education and practice, often becoming a requirement for publication, funding or course design. A new, government‑funded ‘participation industry’ has grown up around it. Yet the inclusion of lived experience is frequently tokenistic, poorly evidenced and easily mobilised to reinforce existing ideological directions rather than challenge them.
The NCS proposals offer a case study on the limits of relying on lived experience as the main basis for policy. Following the COVID‑19 crisis in social care, the Feeley Review (2021) recommended a paradigm shift in social care, starting from listening to those with lived experience. The Scottish Government embraced this framing and promised a rights-based NCS designed by people with lived experience of using or delivering care.
While the ambition for a NCS was widely welcomed, including, as we say by Common Weal, serious concerns emerged: under‑costing, centralisation at the expense of local authorities, weak evidence for the existing integration agenda on which it would be based, continued reliance on private markets in care, and a lack of clear philosophical vision beyond vague human rights rhetoric.
Despite these substantive issues, the Government doubled down on ‘lived experience’ as its main justification for its version of the NCS and appeared less interested in workforce or critical expert perspectives. When opposition grew, the legislation was paused, but instead of revising the Bill itself, ministers created an Expert Legislative Advisory Group (ELAG) presented as embodying lived experience. In practice, ELAG was a diffuse stakeholder group focusing only on general principles, functioning largely as a political delaying mechanism and rubber stamp.
As disquiet increased, COSLA and trade unions withdrew. Rather than engage substantively with their critiques, ministers invoked the authority of those with ‘lived experience’. A letter from the minister responsible for the bill noted ‘some opposition to these proposals’ … ‘without any direct consultation with people with lived experience’. She proceeded to invite people to share their views ‘and encourage those who oppose the NCS to listen to you, the experts who understand what change is necessary’.
“The social commentator, Darren McGarvey in his recent book on the ‘Trauma Industrial Complex’, offers a compelling caution against overclaiming ‘lived experience’.”
The second half of our article considers the concept of experience, locating it in phenomenological and post‑structural philosophical traditions. Experience does not offer an unmediated, authentic bedrock of truth but is historically and culturally embedded, discursively constructed and continually re‑constituted. It is not a stable concept. Elevating raw, affective testimony to the status of unquestionable knowledge risks subordinating analysis to emotion and enables political instrumentalisation. Evidentially, ‘lived experience’ is of weak value. Claims about improved outcomes from lived-experience‑led approaches often rest on small, qualitative studies and self‑reports, not robust evidence of sustained, system‑level change.
Adding ‘lived’ to the idea of experience adds a further layer, often associated with social disadvantage (e.g. homelessness, mental ill‑health, addiction) and with contemporary critical social justice (CSJ) frameworks that foreground identity, power and victimhood. Within this ideological context, negative experiences are valorised as uniquely authoritative, questioning them can be cast as oppressive. This ties ‘lived experience’ to moral and political, rather than evidential agendas.
The fact is that everyone has experience, or as it now seems to be known ‘lived experience’ but when coopted for policy purposes, some forms of experience (especially narratives of suffering) are privileged over others. Which stories are chosen is a political decision.
We might offer a reason for this. Focusing on personal narratives can obscure the structural and economic causes of inequality, deflecting attention from the need for redistributive or systemic reforms. More broadly, identity‑based recognition and emotionally resonant participation provide moral cover for policies that leave underlying power relations and material inequalities unchanged.
The social commentator, Darren McGarvey in his recent book on the ‘Trauma Industrial Complex’, offers a compelling caution against overclaiming ‘lived experience’. He concludes that adversity gives insight but not automatic policy expertise. Over‑valuing lived experience can sideline necessary professional challenge, privilege the loudest or most relatable voices over the most rigorous.
We conclude that the Scottish Government’s reliance on ‘lived experience’ as crystallised in the NCS proposals, represents an abdication of political and analytical responsibility. The place of lived experience should be re‑thought within democratic, evidence‑informed policymaking rather than deployed as a vague, politically convenient mantra that both justifies and obscures weak policy.