Another consequence of the frequent tendency to treat participation as an isolated add-on has been the failure to make broader political connections. This may have its roots in the fact that PPI has more often been examined through the lens of health and public policy than political studies and, that academia often struggles to advance interdisciplinary activity. Elsewhere, I have charted four stages in the development of western representative democracy and the emergence of provisions for participation. The timescales provided relate to the UK and can vary with different countries. Thus:
Working for universal suffrage in representative democracy and the achievement of social rights, like the right to decent housing, education and health, from the late nineteenth to mid twentieth century;
Provisions for participatory democracy and community development, associated with the 1960s and 70s
Specific provisions for participation in health and social care, from the1980s through to the first decade of the twenty first century
State reaction and service user-led renewal as conflicts and competing agendas develop, from 2010 onwards .
The third stage identified approximates to UK developments like the setting up of the National Institute for Health Research INVOLVE and increasing requirements for PPI in research and provision. In the fourth stage, however, we can also see the increasing articulation of rifts between state/service system-led ideas of PPI and consumer involvement and the pressure from service users and their allies for more say and democratic control over their lives and services and a questioning of formal arrangements, as they increasingly identified these as inadequate for their purpose (; Madden and Speed [4, 6, 10, 18];).
The period since 2010 has been one of the strengthening of right wing neoliberal politics, with an even stronger shift during the latter part of that era to populist right wing politics. This has conspicuously developed in the US, parts of Europe and the UK. While such politics are associated with demagoguery and xenophobia, they are also linked with attacks on public services, cuts in public service budgets and the political stereotyping and ‘othering’ of some groups. This tends to be at increasing odds with service user pressure for involvement and change, especially since service users, notably disabled people and mental health service users, have become particular targets. Significantly in the UK such activity has been associated with an extreme ‘welfare reform’ policy which has restricted eligibility for both disability and employment benefits. Scapegoated those receiving them, it has been associated with little if any PPI or user involvement . Dissatisfaction with promises of user involvement have become more explicit . Conflicts between the two competing understandings of involvement have become both more explicit and more contested, with radical new user groupings and organisations emerging like Disabled People Against Cuts, Spartacus and the Mental Health Resistance Network, which have been dismissive of traditional consultative involvement while in the vanguard of opposing welfare reform, especially using direct action . This has also led to distinctions increasingly being drawn between PPI and user led activities and involvement, with the former treated with rising wariness, suspicion and hostility. Thus one critique dismisses PPI as a ‘zombie’ policy, unproductive for change and improvement .
There is an increasing sense that service user-led research and service users in research face discrimination and an uphill struggle for equality and are still operating on a far from level playing field. This is seen to extend to the allocation of research grants, the focus of research, support for user-controlled research, the value attached to emancipatory research and career opportunities for user researchers, all of which it is argued are inferior [11, 23, 24]. At the same time there has been a growing sense among service users and their organisations that shared language but different meanings and intentions has led to the widespread subversion of their ideas and innovations in the service system, with notions like ‘self-management’ ‘peer support’, ‘peer worker’ and person-centred support, all being undermined and reframed in terms of dominant understandings and values [5, 6, 24].