I find co-production and collaboration challenging— mostly due to the underlying differences in deciding the level of commitment shown towards genuinely sharing leadership and space with those who possess lived expertise.

Things can only be collaborative if those within the power dynamic are happy to share their positions of power. This means stepping away from decision-making and allowing marginalised and intersectional people the grace, time and space to be able to consider how they would like to develop their own community support networks.

Power Dynamics in Leadership

Today, I confronted a white, middle-class man with a medical degree, questioning the power held by leaders within the NHS. I suggested that this power should be used collaboratively.  He spoke about people living ‘glorious lives’, which felt disconnected from the realities experienced by many.

Collaboration Requires Genuine Power-Sharing

Some of the terminology he used in his explanation highlights a fundamental issue: true collaboration can only occur if those holding power are willing to relinquish their positions and step away from decision-making. This would allow marginalised and intersectional individuals the grace, time, and space to develop their own community support networks as they see fit.

Disconnect Between Leadership and Lived Experience

The post suggesting that people could lead ‘glorious ordinary lives’ demonstrates a significant disconnect. Those who most need a seat at the table when decisions are made often lead lives marked by poverty, intersectional stress, stigma, and discrimination. They may identify as physically disabled; they may be transgender. They may identify as having serious mental illness, be neurodivergent, or act as full-time carers.

Ignored Voices

This is the reply I posted:

Some of your terminology could be explained. You use language such as “the power we have as leaders”. The health service is full of leadership that is not intersectional. Collaborative leadership means people step up with support if needed. Leadership roles embedded in lived expertise, and a true culture change is required. The predominant model is that of people in power asking lived experience experts to tell their story and then they keep the power to decide health outcomes. How are you going to make sure communities are involved? How are health services going to embedded lived expertise? I cannot tell you the number of times I have been thanked for my story and then it has been ignored.

Collective Responsibility for Fulfilment

Society should aim to create fulfilling ordinary lives, but relying only on government or leaders is not enough. Real change comes from individuals like us, who can make a difference through our everyday actions and interactions. My story is not an imaginary narrative; it is my life. My comment was ignored.