Lived experience, power and leadership 

David Gilbert, Patient Leadership Expert and Director at InHealth Associates, opened the panel with a powerful reflection on power, vulnerability and leadership. Drawing on decades of experience as a  system leader, consultant and user of mental health services, David argued that traditional engagement approaches often limit lived experience to carefully controlled spaces that protect institutional power. He described lived experience leaders as people who have “been through stuff, know stuff, and want to change stuff”, bringing strategic and systemic intelligence rooted in deeply disrupted relationships with self, others, services and society. For David, meaningful involvement depends on creating real routes to power rather than relying on consultation or symbolic co-production. 

From consultation to co-production 

Jessie Cunnett, independent consultant, trustee of National Voices and Assistant Professor in Leadership and Change Management at Brighton and Sussex Medical School, built on this theme through a satirical storytelling approach. Using the metaphor of the “three little shifts” in NHS reform, Jessie critiqued how large-scale change initiatives often default to asking individuals to take more responsibility for their health while retaining power centrally. She argued that people with lived experience are not simply users or consumers of services, but partners and co-producers of health and wellbeing across the life course. For Jessie, real progress requires those traditionally in power to act as facilitators and space-makers, rather than managers of participation. 

Lived experience roles inside systems 

Jo Lomani, Expert by Experience and Senior Project Manager at NHS England, reflected on their experience working in one of the first senior lived experience roles embedded within a national mental health policy team. Jo described the steep learning curve for both individuals and organisations, and the risks that arise when lived experience roles are poorly understood or treated as optional add-ons. They highlighted how lived experience perspectives can shape areas often excluded from involvement, such as business cases, finance and procurement, while also questioning why lived experience roles are expected to evidence their value when other professional roles are not. 

Relational care, learning and emotional labour 

Leanne Gelder, Head of Quality Transformation at NHS England, shared her journey as a mental health nurse and senior leader. She emphasised the importance of connection, listening and relational care, and cautioned against over-complicating lived experience involvement through excessive use of frameworks. Leanne also acknowledged candidly the emotional labour involved in lived experience work, particularly for people employed within large and political organisations. She highlighted the responsibility of leaders and managers to create safe, honest and supportive environments where lived experience colleagues can thrive without being overburdened. 

Evidence, outcomes and impact at scale 

Julie Repper, CEO of Imroc, grounded the discussion in evidence from across the mental health system. She outlined the strong research base demonstrating the impact of lived experience involvement at individual, service and system levels, including shared decision-making, peer support, recovery colleges and large-scale co-production; “for every £1 invested in recovery colleges, we see £8.50 of return – through increased confidence, reduced service use, and greater engagement in education and employment.” Julie emphasised that lived experience involvement should not be framed as something that needs constant justification, but as an essential component of effective, humane services. 

Audience Q&A: bringing lived experience into practice 

The Q&A session opened up a more conversational exploration of how lived experience involvement plays out in real systems, beyond principle and policy. David shared his work in Sussex on getting the right chairs with support in the waiting rooms for the musculoskeletal service. David shared how “if I hadn't have been there, if I hadn't known the systems and the relationships, if I didn't have a patient partner panel...who are going in there testing the chairs, who were picking up on the complaints, if they didn't have a patient director, if they didn't have patient partners for improvement, if we weren't listening to the complaints, if I didn't know Jimmy, people would have fallen out their chairs or just be standing in the waiting rooms getting worse as they waited for physio.” David shares this work in more detail in his report The Patient Leadership Triangle. 

One key theme from the Q&A was the experience of children and young people’s services, where panellists acknowledged both progress and persistent barriers. While there is growing recognition of the value of lived experience, additional complexities around safeguarding, employment and family dynamics can make involvement harder to embed. At the same time, Leanne highlighted the creativity and insight that young people bring, particularly in challenging outdated assumptions about communication, feedback and engagement – including how they wouldn’t use QR codes! 

Another strong thread was how organisations can ensure they are giving as much as they take from their lived experience workforce. Panellists spoke candidly about the emotional labour involved in lived experience roles, the risks of burnout, and the need for clarity, protected spaces and meaningful support. David shared how he created a curriculum of support ‘AIDE’ (Admin and access, Incentives and value, Development and skills, and Emotional labour) for patient partners in his work as Patient Director, as an example of supporting lived exeprience roles to succeed.  

There was consensus that organisations must reflect honestly on their readiness before creating lived experience roles, and that responsibility cannot rest on individuals alone; Jessie argued that “just because you have a handful of people that do a good thing doesn't mean that the organisations themselves necessarily really understand and learn and grow,” suggesting that while it doesn’t necessarily need to be “everyone’s responsibility...it needs good leadership and it needs good people.” 

The discussion also returned repeatedly to power and culture. Panellists stressed that structural protection, leadership accountability and shared learning are essential if lived experience involvement is to move beyond reliance on exceptional individuals and become sustainable, valued and genuinely transformative.  

Looking ahead: hopes for the next 20 years 

The session closed with a question from Harris Lorie: where do we hope lived experience involvement will be in 20 years’ time? 

Across the panel, there was a shared sense that the future of lived experience involvement must be defined by power, permanence and normalisation, rather than short-term pilots or symbolic participation. Speakers consistently returned to the need for power that cannot be easily withdrawn. David envisaged independent lived experience leadership structures – such as a national network or an “(Un)Royal College of Patients” – to ensure authority and longevity. Jessie echoed this emphasis, warning that participation without genuine redistribution of power risks maintaining the status quo rather than transforming it. 

Leanne expressed a strong hope that lived experience roles will become so embedded that future generations look back with disbelief at a time when they did not exist. Jo captured the scale of change required in a single word: revolution – moving beyond incremental reform towards systems fundamentally reshaped by lived experience insight. 

Julie reinforced that this future depends on whole organisations and workforces valuing lived experience, not as a tick-box exercise but because it demonstrably improves experiences, outcomes and service effectiveness. 

Closing reflections 

In his closing remarks, Dan Rogers reflected that shared decision-making consistently leads to better outcomes for individuals, communities and organisations. He noted that while the case for lived experience involvement is strong, the focus must now shift to making it business as usual, supported by leadership, culture and practical infrastructure. The webinar ended with an invitation to continue the conversation and to build confidence, capability and commitment across systems. 

We’d like to extend our deepest thanks to our speakers, David Gilbert, Jessie Cunnett, Jo Lomani, Leanne Gelder and Julie Repper for contributing their experience, insights and learnings so honestly and openly. We look forward to continuing the conversation, both celebrating and critically reflecting on the value of lived experience involvement. 

If you would like to discuss how we can support your health and care organisation to involve lived experience into your programme of work, please get in touch with Harris Lorie at Harris.Lorie@thepsc.co.uk. And if you want to stay informed about Public Voice and The PSC’s work in LEI and future events, you can sign-up here.