Nothing for Us, Without Us: listening and learning from people with lived experience is a piece of work initiated by the Global Coordination Mechanism on the Prevention and Control of NCDs, a WHO instrument aimed at facilitating multistakeholder engagement in the NCD arena.
The work aims to share a series of perspectives from individuals with lived experience of a range of NCDs and mental health, developed under the framework of the ‘Nothing For Us Without Us’ report.
This landmark report argues that ‘The right to participate is an essential feature of the right to the highest attainable standard of health. The transfer and reorientation of power to people with lived experience is essential to ensure adherence to the principles of respect, value and dignity in meaningful engagement and support for health for all’.
More than a powerful set of personal testimonies, the purpose of this video project is to harness the expertise of those living with NCDs, emphasising their right to contribute to the development of health outcomes not as passive sufferers, but as experts with agency.
Non-communicable diseases make up an estimated 71% of deaths globally, yet receive 1-2% of health development funding. The experiences recounted by Anu, Helena, Hauwa, LaVerne, Ali and Mark embody the human face of global public health and struggles to close the disparities in health outcomes for those living with NCDs.READ MORE
Obesity and the NCD space – importance of lived experience
The challenges faced by many of the participants in the video project will be familiar to those having to navigate the largely inadequate systems for obesity care and management. Perhaps the greatest obstacle is the struggle to achieve equitable access to medical provision, often hampered by geography, socio-economic status, gender, race and other determinants. Meanwhile, people living with obesity also face stigma and discrimination on a daily basis, amplified by prejudicial attitudes at a wider societal level.
Experiences of stigma are often coupled with a poor understanding of the complex drivers of obesity. The ROOTS of obesity are diverse and complex and, for this reason, a diversity of voices and experiences is essential to confronting the false ‘eat less, move more’ narratives peddled. Meaningful engagement of those living with obesity is something that World Obesity Federation is committed to. As part of this work, the Patient Portal is a resource particularly for patient individuals and communities not already represented by existing patient groups.
World Obesity encourages further contributions to our archive of lived experience perspectives for publication on our Patient Portal, website and other channels. It is vital that people living with obesity have the ability to share their expertise and make the appeal for improved interventions.
The challenges faced by PLWO need to be told, whether these may be access to treatments, medications, specialists, struggles with insurers, or broader upstream issues, such as access to healthy foodstuffs, propitious environments for physical activity, equitable economic systems, and more. The solutions too, must be shaped by those living with obesity.
Authentic representations of obesity from across the world can help others living with this disease– but may also serve as an appeal to medical professionals, policy makers and the lay public to take the issue more seriously.Contact us