People with psychosocial disability have historically been marginalised from mainstream society by longstanding prejudicial beliefs about their right to full citizenship and their ability to contribute meaningfully to decisions that have an impact on their lives [1–3].
In this paper, we use the term psychosocial disability to refer to people who have experienced enduring mental and emotional distress which “in interaction with various barriers…hinder their full and effective participation in society on an equal basis with others” . We use this term to indicate our view that barriers to people with psychosocial disability participating in decision-making, are not simply a result of their mental and emotional distress. Rather, barriers arise in substantial part from the way in which the organisation of society tends to limit the personal, social, political and economic power of people with disability, including people with psychosocial disability [5, 6].
Prejudicial beliefs about the lack of capacity to make rational and informed decisions has led to infringements of the rights of people with psychosocial disability to participate in political, legal, clinical and personal decisions which concern their lives [2, 7–11]. This lack of meaningful involvement in decision-making has been a hallmark of many people’s experience of the mental health system [12–15]. Stigmatising and dehumanising experiences endured by some people with psychosocial disability within this system have led to the development of an alternative peer-based support system for recovery which operates outside of the traditional mental health system . In Africa, for example, the oldest African country level peer-led advocacy organisation for people with psychosocial disability, Mental Health Uganda, was launched in 1999. A dozen small country level organisations have since established themselves in other African countries. Most of these peer-led orgnisations are members of the Pan African Network on People with Psychosocial Disability (PANUSP), a continental level umbrella body launched in Kampala, Uganda in 2005. PANUSP, a regional member of the World Network on Users and Survivors of Psychiatry (WNUSP), recently ratified its constitution at its first congress since its launch in Cape Town, South Africa, in October 2011 (Kleintjes S, Lund C, Swartz L: Organising for self-advocacy in mental health: experiences from 7 African countries, forthcoming).
The work of activists living with psychosocial disability in high income countries over the past 40 years has led to a growing acceptance of the importance of including people with psychosocial disability in decision-making which affects their lives. This has been associated with a reform of the way in which some role players conceptualise and provide support for the recovery of people living with psychosocial disability [3, 17–21]. Common areas where people with psychosocial disability have been consulted include treatment, service development and evaluation, education and training, curriculum development and research . While some progress has been made to develop procedural, organisational and political support for participation of people with psychosocial disability in many countries, their participation has been influential but not transforming of mainstream mental health care . Further, their participation in over-arching policy-making processes is still infrequent [24, 25], particularly in low and middle-income countries . Members of PANUSP, for example, are still in the early stages of lobbying for their participation in policy development at country level, and PANUSP is yet to make a regional impact on policy processes on the African continent (Kleintjes S, Lund C, Swartz L: Organising for self-advocacy in mental health: experiences from 7 African countries, forthcoming).
South Africa is no exception to the problem of the voices of people with psychosocial disability being under-represented in policy processes. In an earlier article , we noted that South Africans with psychosocial disability have had little opportunity to participate in post-apartheid revision of the legislative, policy and service development framework guiding the country’s new democracy, including mental health reforms. They were not consulted in the drafting of the first post-apartheid mental health policy in the influential “White paper for the transformation of the health system in South Africa”, adopted in 1997. A set of national mental health policy guidelines, consistent with the White paper, were also developed and approved in 1997, but were not formally adopted and implemented at the time . Again, consultation of people with lived experience was scant. The Mental Health Care Act, no. 17 of 2002, promulgated in 2004, was based on a lengthy consultation process with a range of stakeholders. Consultation of people with psychosocial disability was attempted through the prominent nongovernmental organisations (NGOs) for mental health, and via consultation of prominent individual advocates with lived experience. However, there were no formal peer-led structures in the country at the time.
In a more recent article  we documented the policy priorities of 40 South Africans with psychosocial disability and stressed the importance of listening to the voices of people with psychosocial disability when developing policy. It is also necessary to listen to and understand the views of policy makers and service providers, if sustainable change is to be made possible, particularly given the asymmetric power relationships between these stakeholders and people with psychosocial disability [2, 18].
The aim of this particular article is to document barriers to participation of people with psychosocial disability in the development of South Africa’s over-arching national mental health-related government policies and legislation. In particular, we focus on the opinions of a range of stakeholders who have influence over mental health policy development and who are involved in the implementation of services based on these policies. These are policy makers, professionals, representatives of NGOs working in the mental health sector, and religious leaders. These findings are drawn from data collected by the first author from August 2006 to August 2009 as part of the Mental Health and Poverty Project (MHaPP), which focused on mental health policy development and implementation in Ghana, South Africa, Uganda and Zambia . While officially a public health priority in South Africa, mental health has nevertheless enjoyed lower priority relative to other health programmes in public sector resource allocation. In the early 2000s, low political support for mental health was evident for several years in vacant posts in the national directorate for mental health, adversely impacting on public sector policy and service development and implementation at that time . With the appointment of a new national Minister for Health and a new senior public administrator supportive of a mental health agenda, a new national mental health policy for the country was drafted in late 2010 using the South African findings of the MHaPP study reported here and elsewhere. The draft underwent a preliminary public review by departmental stakeholders during 2011. The updated draft was launched for public comment by the Minister of Health at the country’s first national mental health summit in April 2012 . In late 2012, the policy was adopted for implementation by the National Health Council, the highest decision-making body for health in South Africa.