Helena, a pediatrician and mother, living in Sheffield in the United Kingdom of Great Britain and Northern Ireland, was already living with multiple disabilities caused by an autoinflammatory disease when she was diagnosed with cancer in 2009 .
“I went from being a pediatrician, a mother and a very active and very dynamic athlete […] be in a wheelchair. I was extremely independent and, as a woman, I really wanted to be a role model for my boys. I think that’s what you have to learn to hold on to, that inside, you haven’t changed,” she says.
Helena is one of six people in a short documentary which highlights the experiences of people living with non-communicable diseases (NCDs) and mental health issues around the world. People with lived experience can often offer valuable expertise and powerful stories about how to manage and improve their individual health as well as the health of other community members. Their first-hand knowledge can help shape policy, create better health programs, and inspire others to contribute.
WHO is dedicated to advancing the meaningful engagement of people living with NCDs and mental health conditions around the world, and has recently established a range of activities and platforms to support this goal. The latest is a new series of films on the subject in the six languages of the United Nations.
Watch the full 30-minute documentary, “Nothing about us, without us: listening and learning from people with lived experience”, on the WHO YouTube channel:
Type 2 diabetes in a changing environment: Ali’s experience in Lebanon
In the municipality of Ghobeiry in Lebanon, Ali is motivating others in his community to exercise, eat better and lead healthier lives, after being diagnosed with type 2 diabetes in 2017.
“People may not be taking care of themselves, not because they can’t afford medicine or don’t have access to healthy food. They would have all the tools, but they are unable to use them for underlying mental reasons. he says.
Individuals and communities with direct experience of living with NCDs and mental health issues hold the key to designing effective, inclusive and equitable health interventions that leave no one behind. Their voices can unlock opportunities to overcome barriers to accessing and maintaining health care. The right to participate in one’s care is also a fundamental element of the human right to the highest attainable standard of health.
Watch Ali’s story:
Gender-based violence and mental health: the lived experience of Hauwa in Nigeria
Hauwa, a mental health and human rights defender from Nigeria, was sexually assaulted in 2013 and diagnosed with bipolar disorder two years later.
“We know what is best for us. This is why our needs, our choices, our voices and our experiences must come first. We need to tell you what support looks like to us. We need to tell you what a fair, equal and fair system looks like to us. We need to tell you what human rights look like when it comes to treatment for us,” as she challenges policy makers and health professionals.
In the complex and interconnected global health landscape, the meaningful engagement of people with lived experiences is increasingly becoming a mainstay. In light of the global NCD epidemic, the recent COVID-19 pandemic, and persistent health inequities, it is equally crucial to understand the complex determinants of health conditions and uphold the principles of respect. , worth and dignity.
Watch Hauwa’s story:
Type 1 diabetes and the next generation of leaders: Mark’s experience in Brazil
“When I received the diagnosis, it was […] difficult to deal with a situation that was now mine. Although I have seen other people with diabetes […], they were much older and I didn’t know anyone my age who had diabetes. That’s why it’s not easy to deal with it,” recalls Dr. Mark Barone, Brazilian Vice-President of the International Diabetes Federation.
Meaningful engagement of people with lived experiences also pays particular attention to the voices of marginalized or neglected groups and communities. Community networks play a critical role in providing people with access to critical information and support and breaking down silos and barriers.
Watch Mark’s story:
Community action against breast cancer: the experience of LaVerne in Australia
LaVerne, a breast cancer survivor, mother and community leader from Redfern, Australia, conducts regular screenings and health promotion activities with Indigenous women.
“We have screening days where we bring the mammogram bus. We have lunch, we bring in hairdressers, beauticians. It’s a real ladies day. This allows them to feel free and talk to each other. Indigenous women, you know, young women, they don’t want to go strip and get tested,” she says.
Fundamentally, meaningful engagement and co-design of health policies involves a shift from the individual as a passive user to an empowered and valued agent of change. People with lived experience not only need a seat at the decision-making table, but must be able to drive processes, co-create programs, and implement contextual solutions.
Watch LaVerne’s story:
Advocacy against rheumatic heart disease: Anu’s experience in Nepal
“I am learning to undertake advocacy in this sector, […] because I found out that not everyone with rheumatic heart disease is united and there is no group or support system,” says Anu Gomanju, a public health professional and graduate student in Nepal. , who was diagnosed when she was 11 years old. “If we can come together, we can share our challenges or our experiences because my problem could be a solution for someone else.”, she adds.
Despite recent progress on this topic, meaningful engagement too often fails to move from intention to action and risks remaining a symbolic tick-box exercise.
Watch Anu’s story:
Accelerated action now: Helena’s experience in the United Kingdom of Great Britain and Northern Ireland
“My hopes for the future of all people with NCDs are that they are valued and involved in planning their own care, that they have a stronger voice with policy makers, that they are much more involved right from the start.” concludes Helena in the United Kingdom of Great Britain and Northern Ireland.
Watch Helena’s story:
Regional consultations, case studies and new framework for meaningful engagement
In early 2022, the WHO Global NCD Coordination Mechanism (GCM/NCD) within the Global NCD Platform co-organized several regional consultations and focus groups across all WHO regions .
“It is now clearer than ever that people with lived experience of NCDs around the world face many challenges for meaningful engagement,” says Dr Svetlana Akselrod, Director of the WHO Global NCD Platform . “What was missing was a clear roadmap for actions, as well as links with all levels of WHO and with WHO Member States. The roadmap and the connections are now established, and this is a significant achievement. »
Insights from all the consultations and the film feed into the co-development of the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health Conditions, which is expected to be released in 2023.
Meaningful engagement of people living with NCDs and mental health issues emphasizes the diversity and intersectionality of individuals and communities. Aspects of social and political identities, such as gender, ethnicity, religion and socio-economic status, to name a few, overlap and create multiple forms of power and privilege.
By understanding and integrating these multiple layers and perspectives, policymakers, health professionals, health care providers, and people with lived experiences can move from traditional top-down or one-size-fits-all models of care to co-designing programs. , health policies and programs. services.