MHM Magazine

16 | MENTAL HEALTH MATTERS | 2023 | Issue 4 MHM includes full empowerment and involvement in mental health advocacy, policy, planning, legislation, programme design, service provision, monitoring, research and evaluation”. The UN Convention on the Rights of Persons with Disabilities states the commitment to “recognising the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty”. The International Covenant on Economic, Social and Cultural Rights speaks of the right to work and remuneration to be fair and equal “for work of equal value”. Elements of good practices in policy and service development will ensure that people with lived experience are included as key partners, right from the outset and be fairly and equally remunerated for their contributions and expertise. Inclusion of people with lived experience goes beyond mere development and implementation, but extends to monitoring and evaluation of service delivery. Measuring impact should not merely be about clinical outcomes but about achieving quality of life and should be set as a key indicator of mental healthcare services and interventions. Including people with lived experience in turn results in positive outcomes whereby policy and services form the foundation for respecting and protecting human rights; establishing quality services and support to communities that are aligned with their contextual needs; building trust and confidence in the system that improves engagement with care; and most importantly, it’s cost-effective in the sense that outcomes are invested to benefit the people. In reality, despite the emphasis and evidence of the value of meaningful and authentic inclusion of lived experience partners in mental health research, policy and service delivery, there are obstacles hindering the realisation of the ideal of experts by experience integration across these sectors. Stigma and discrimination has been one of the biggest barriers to inclusion of people with lived experience and has led to devaluing the personal and collective experiences of people with mental health conditions as significant to transformation of mental healthcare systems. Stigma and discrimination has further resulted in persistent misperceptions that people with lived experience are unable to contribute towards discussion and decision- making processes, due to perceived limitations resulting from a mental health condition, and that such individuals are presumably unable to make decisions. Paternalistic approaches, often with good intentions, have created power-imbalances whereby people with mental health conditions are solely seen as ‘patients’ who are objects of mental healthcare and not partners in creating suitable conditions to access appropriate mental healthcare. As an international lived experience organisation, the Global Mental Health Peer Network (GMHPN) has focused its work and advocacy initiatives on promoting the experiential and monetary value of experts by experience as catalysts for change. Through our experiences as an organisation we have found that stakeholders have expressed significant interest in establishing partnerships with people with lived experience and their representative organisations, however, often do not know "how to" involve lived experience meaningfully and authentically. Despite efforts, stakeholders at times do not understand the role of lived experience throughout all phases of a set project or piece of work, and fail to ensure that people with lived experience are embedded from the start and to the end. Some stakeholders may also have concerns about the relevance of the expertise of people with lived experience and base their understanding of inclusion on a requirement to possess professional qualifications, instead of the expertise derived from concrete experiences that bring practical solutions. In instances where experts by experience had been included in discussion and decision-making processes, most often remuneration for their involvement has been left out of the budget planning, or remuneration has been inadequately budgeted for. This directly devalues the experiential and monetary worth of people with lived experience’s expertise. The assumption made is that people with lived experience should participate in a voluntary capacity; not considering the cost to the person or representative organisation in terms of own resources used to participate or the contributions towards the ultimate outcomes itself. GMHPN developed CONSULT Guidelines to policymakers and other stakeholders as a resource to strengthen their partnerships with people with lived experience and peer-led organisations. GMHPN appreciates governments and policymakers that are open to including our voices and therefore we would like to provide support and guidance on how best to work together and create the change we all envision. Our guidelines provides practical elements of meaningful and effective engagement, including: creating an engaging, safe and supportive space for quality contributions; obtaining diverse representation of persons with lived experience to enhance equality and inclusion; commitment to eliminate power imbalances, paternalistic approaches, tokenism, discrimination, and stigmatisation; sustaining a mutually respected partnership; upholding the principles of effective engagement and consultation; leveraging lived experience expertise through meaningful and authentic inclusion; and transforming policy and practice that is an accurate reflection of lived experience voices. References available on request.