7.1 Background to PPIE

7.1.2 A brief history of PPIE

The history of PPIE within the UK is rooted in service user involvement within mental health services. NHS England defined service user involvement in the following way:

‘… the process by which people who are using, or have used a service, become involved in the planning, development and delivery of that service.’

(NHS England, 2015: p1) Over the past five decades, mental health services have undergone significant changes in the UK with the views and experiences of service users being used to inform the planning, and delivery, of services. The changes in the mental health services were reported to be due to the de-institutionalisation of mental health patients in the 1960s (Pilgrim & Waldron, 1998). Pilgrim and Waldron suggested that, due to de-institutionalisation, an increase of individuals with mental health problems are living in community settings, this has heightened these individuals’ expectations of the right to mental health services which best suit their needs. In 1973 service user involvement extended from the mental health field and became a key policy driver which underpinned health services (Tait, 2005). Service user involvement gained more momentum in the 1990s and expanded to include members of the public, not just patients who

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used healthcare services (Department of Health, 1999). In 2006 the UK government aimed to create a patient centred National Health Service (NHS) and made it a legal requirement that all NHS organisations engaged with service users, and members of the public, in the planning and delivery of local services (Department of Health, 2006). The Department of Health (2006) also replaced the term ‘service user involvement’ with ‘patient and public involvement’.

Following the restructure of the NHS in April 2013 (described in Section 1.1.3), a key political aspiration was to ensure that patients and the public had more control over the healthcare system (NHS England, 2014). The UK government has given more power to the public in the design and delivery of healthcare services. Within the ‘Five Year Forward View’ NHS England described that ‘patients and communities offer the healthcare system a

renewable energy’ (p9). This quote from NHS England suggests that healthcare services should use the public as a resource which implies that healthcare professionals and researchers have power over when to include the ‘renewable energy’ in the design and delivery of healthcare services.

The issue of power when including the public in decision-making for healthcare services cannot be ignored. According to Arnstein (1969) public (or citizen) participation in decision making and planning processes is a categorical term for power. Therefore, understanding participation means understanding power dynamics between the public and powerholders. According to Arnstein powerholders include politicians, project leaders and bosses of

companies. Arnstein believed public involvement is when members of the public are trying to acquire the power to make institutions receptive to their views and developed a ‘ladder of citizen participation’. Figure 7 is an amended version of Arnstein’s ladder (p217).

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Figure 5 Arnstein's (1969) 'ladder of citizen participation’

The bottom rungs of Arnstein’s (1969) ladder, manipulation and therapy, are levels of non- participation. The aim is for powerholders to educate citizens. When conducting health research, Arnstein’s levels of non-participation go against INVOLVE’s (2010) aim of doing research with the public, rather than to the public. The ladder then progresses to levels of tokenism which includes: informing, consultation and placation. The public are allowed to voice their opinions to the powerholders, however they lack the power to ensure that their voice will change the powerholders’ decisions. Placation is a higher level of tokenism, it allows citizens to advise or plan programmes but, ultimately, powerholders have the right to judge the legitimacy of the advice. The ladder then progresses to forms of citizen power whereby the public have increasing degrees of influence over decision making. Partnership is

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whereby power is exchanged and redistributed through negotiations between the public and powerholders. At the upper rungs are delegated power, whereby the public make most of the decisions, and citizen control, where the public hold full power. Achieving delegated power or citizen control is not always possible: different political, social and economic contexts may create different environments, offering different opportunities and constraints (Davidson, 1998). For example, in the context of completing a PhD which needed to be my own work, I could not give members of the public full control of this study.

Arnstein’s (1969) model has influenced public involvement in health services (Tritter & McCallum, 2006), however, there are limitations of the framework. Lithgow-Schmit (2006) argued that Arnstein’s ladder was value laden meaning that judgements are built into the model. The lower rungs are seen as poor citizen participation whereas the upper rungs are perceived as good participation. Tritter and McCallum also argued that Arnstein ignores that there may be different forms of knowledge and expertise. For example, an individual living with a mood problem is more knowledgeable about managing that problem on a day-to-day basis than a healthcare professional who does not suffer from the said problem. Tritter and McCallum argue that for public involvement to improve health services, it must acknowledge the diversity of knowledge and experiences of both health professionals and the public. Arnstein’s (1969) framework demonstrates an overt struggle for power between members of the public trying to progress up the ladder and powerholders, accordingly giving power to one group (i.e. members of the public) ceases power to another (i.e. powerholders). Arnstein’s hierarchy of participation fails to capture the complexity of public involvement. Arnstein assumes that any power differences between members and non-members of research

institutions are replicated without being given any thought. In contrast to Arnstein’s hierarchy framework, Tritter (2009) suggests that research participants and researchers are equal co- creators of knowledge. Although Tritter’s work ignores the effects of power and hierarchies

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which are inherent within social structures, Tritter proposed that bringing together a

partnership of different groups (e.g. those with a mood problem and healthcare professionals), can result in better research, health services and health outcomes.

In document How do older adults self-manage distress and what role does the internet have? A qualitative study (Page 177-181)