Transforming mental health services – that is, making them more focused on a person’s recovery – isn’t only about accessing extra resources or new technologies. It’s about something more human: acknowledging and including the expertise of people who have lived with mental health challenges. This is the premise behind WHO/Europe’s powerful new roadmap, “Transforming mental health through lived experience”, launched on 30 June to an audience of nearly 400 from across the globe.
The roadmap – the first of its kind in scope and scale – is co-designed by people who have lived with or are living with mental health challenges, along with their family members, as well as Mental Health Europe and Ireland’s Department of Health and Health Service Executive. It is a blueprint for how countries can fully integrate people with firsthand, or lived, experience (“lived experience practitioners”) into mental health policies, services and communities.
Lived experience as expertise
Those who have experienced mental health difficulties bring an expertise not offered in any course or textbook.
“Lived experience expertise is equal to but different from other forms of expertise –clinical, social and policy expertise, to name a few,” says Michael Ryan, Head of Mental Health Engagement and Recovery at Ireland’s Health Service Executive, and chair of the task force that developed the roadmap.
“Lived/living experience is essential knowledge for creating health systems that provide people using those services with maximal opportunities to recover and create a life of their own choosing,” he continues.
Lived (or living) experience practitioners hold a range of roles and applications within mental health services: they help others on their recovery journeys by modelling what recovery looks like or by supporting them to navigate through care pathways, or they advise organizations and policy-makers on whether mental health policies will effectively do what they intend to.
Whatever their role, the insights of lived/living experience practitioners, alongside those of service providers, policy-makers and families, are critical to building mental health systems that are not only effective, but compassionate and recovery-oriented, placing the person at the centre.
“The key benefit of lived experience expertise is giving hope to those struggling with mental health challenges: hope that recovery is possible for everyone,” says Michael. “By including the power of lived experience, health systems can transform how they provide services and the lives of those using them.”
Turning insight into action
The roadmap outlines 6 essential actions for countries to embed lived experience in mental health systems and services, including:
- strengthening national policy to formally include lived experience roles
- building organizational readiness for meaningful integration
- promoting co-creation in service design and delivery
- standardizing training and professional development
- supporting practitioners through supervision and reflective practice
- expanding reach using digital innovations.
These actions are based on a systematic evidence review, actual cases of what worked across Europe and the diverse expertise of lived experience practitioners, health-care professionals, academics and policy-makers from 29 European countries.
Paid professional roles
Although 86% of countries in a recent WHO/Europe survey say they include lived experience in mental health policy-making, many do so in a tokenistic way. The roadmap is designed to transform that – moving from occasional consultation to meaningful, paid professional roles that reflect the value of lived expertise.
“In my experience, the most significant gaps are in the areas of peer leadership and inclusive organizational culture,” says Flóris Balta, from Hungary, who added his living experience expertise to the roadmap task force. “There are community psychiatry services in operation that do not work with lived/living experience experts at all, and while decision-makers may engage in dialogue with provider organizations, this rarely means that lived/living experience experts have a meaningful say in policy-making.”
“I believe the action points in the roadmap have the potential to mobilize international experience and evidence to help change this,” adds Flóris. “Additionally, I would very much like to see a representative body for lived/living experience experts established in Hungary.”
Everyone has a part to play
One of the key strengths of the roadmap is that it was co-created by a task force of experts by experience and by profession. This task force was chaired by Michael Ryan along with Catherine Brogan, former president of Mental Health Europe, current CEO of Suicide or Survive and a passionate advocate in integrating lived experience in service design and policy-making in Ireland.
“Co-creation means that we include – as equals, and from the start of the project, programme, policy or service – the voice of all relevant actors,” says Catherine. “This means people with lived/living experience, family members, service providers, civil society, non-profits, policy-makers and others. This is the strength of co-creation: everyone takes ownership and knows that they have a part to play in transforming mental health systems.”
Co-creation is increasingly seen as a best practice in mental health service design and delivery. WHO/Europe has for years embedded co-creative principles in the design of its own technical products, such as the “Youth engaged for mental health” framework in 2023.
“This roadmap is a clear example of co-creation,” says Catherine. “And the fact that it was co-created will be paramount for actually implementing roadmap actions, promoting true organization commitment.”
“It meant a lot to me to be able to bring my country’s experiences and challenges to the table, knowing that they could be helpful elsewhere too – and that I could learn from the other participants in return,” says Flóris. “It was uplifting to be part of this process: for me, it proved that it is truly possible to work in a way where those with lived experience are heard and treated as equal partners.”
Overcoming barriers, seizing momentum
The launch event, part of WHO/Europe’s “Enough waiting: Reshaping mental health care” webinar series, didn’t shy away from the obstacles. Participants discussed barriers such as traditional staff resistance, lack of sustainable funding and unclear professional pathways – and how the roadmap helps address each one.
Through WHO/Europe’s collaboration agreement with the European Commission – “Addressing mental health challenges in the European Union, Iceland and Norway” – countries will receive continued support to implement the roadmap and reshape mental health care with lived experience at its heart. Over the next year, WHO/Europe will support implementation of the roadmap in select pilot countries.