— Discussion and Analysis
Ideas of and issues in Lived Experience leadership including overcoming barriers.
Abstract
Andy Bell welcomes three brilliant guests to explore how to tackle mental health inequalities from the perspective of people with lived experience. Deborah Williams, founder of The Women’s Association, navigated postpartum depression following each of her pregnancies, but it wasn’t until her third postpartum journey that she found support. Christopher Egan is lived experience lead at We Are Survivors, where he draws on his own journey as a former client to advocate for male survivors of sexual harm. Sarah Rouse is a local councillor in Malvern, who after a lifetime of misdiagnosis, found self-awareness and self-acceptance through training as a mental health counsellor. We explore the missed opportunities that prevented our guests from getting the right support, the things that have made a difference for their mental health, and how they are leading with lived experience to advocate for better mental health for all.
Abstract
‘Mad’ is a contentious term with which many service users/survivors feel uncomfortable. Yet it is the framework for a major new user-led challenge to bio-medical thinking about distress – Mad Studies – which is coming in for criticism for this and other identified shortcomings. Why has it adopted this controversial, conflict-ridden title? This article will explore current criticisms and raise the question of what Mad Studies’ strategy should be to address them for the future?
About
In this episode of Taking Care, host Susan Biggar speaks to an impressive leader and advocate for those living with mental health issues, Maggie Toko. Maggie has led VMIAC, Victoria’s peak organisation for people with a lived experience of mental health problems or emotional distress for nearly two decades.
Maggie puts a face to some of the people who need access to better care and support, and how she has seen the value of lived experience in building meaningful relationships and providing strong support for them. Hear how her own lived experience has also helped her to lead and develop mental health services throughout her career.
Abstract
Common challenges and experiences of the lived experience/peer workforce globally are considered, with an emphasis on ensuring that future developments both protect and promote the unique lived experience perspective.
Purpose: In the Western world, rapid growth in lived experience roles has led to an urgent need for training and workforce development. However, research indicates the roles risk being coopted without clear lived experience leadership, which is often not occurring. In developing countries and in many Western contexts, the lived experience role has not yet been accepted within the mental health workforce. The need for lived experience leadership to guide these issues is highlighted. Sources: Peer-reviewed research, relevant gray literature, and professional experience in countries where little published material currently exists. Conclusions and Implications for Practice: A window of opportunity currently exists to maximize lived experience leadership, and that window may be closing fast if broad-based actions are not initiated now.
Abstract
In 2020 an invisible assassin has swept across the world, creating chaos, confusion and uncertainty. Covid 19 has taken many people’s health, some people’s lives and the lives of loved ones. It has destroyed livelihoods and put the financial futures of billions at risk. We are helpless, there is nothing to fight back with. We are trapped, we have to stay in our homes. We are physically isolated, our usual freedoms and way of life suspended. As a result, our ability to enact fight or flight is inhibited, increasing the likelihood of lasting impacts on mental wellbeing (van der Kolk, 2014). Life as we know it, at least for a time, has changed so significantly we are reimagining our futures in a variety of ways, with no idea what’s really in store for us.
We are collectively holding our breath, fearing the worst and hoping for the best. Never has there been a greater opportunity to stop pathologising the emotional experiences of human beings and start connecting over commonality, sharing stories and strategies to collectively work our way forward. As a global community, we are all engaging with personal recovery on some level and trying to create a new life, with meaning and hope, beyond the effects of Covid 19. At a time when there is a global mental health crisis, the lived experience community has answers that are highly appropriate to the trauma-induced situation we’re all facing.