The Lived Experience Involvement Toolkit: turning good intentions into practical involvement

Summary

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, shares her Lived Experience Involvement toolkit. A practical resource designed to help anyone involved in patient and public involvement, engagement or lived experience work – whether you’re just starting out or looking to strengthen existing practice.

Content

Many organisations want to involve people with lived experience in their work but often struggle with how to do this well in practice. Good intentions can quickly be undermined by unclear processes, inaccessible sessions, or a lack of follow up.

That’s why I created the Lived Experience Involvement Toolkit – a practical, flexible resource designed to support meaningful involvement in workshops, consultations and research activity.

What is the Toolkit?

Lived Experience Toolkit.pdf

The Toolkit is a hands on resource pack that helps teams plan, run and reflect on involvement activities. Rather than focusing on theory, it provides ready to use tools that can be adapted to different contexts and levels of experience. 

Inside, you’ll find:

• simple templates for role descriptions, emails invites, and examples of ground rules
• open ended questions that encourage discussion and reflection
• clear do / don’t guidance based on common mistakes
• practical tips to support accessibility, inclusion and participation.

A quick reference checklist included at the end of the toolkit pulls everything together, making it easy to prepare for sessions without reinventing the wheel. 

Why this matters

Involvement can easily become tokenistic if people feel their time, expertise or emotional labour isn’t respected. Small practical details – breaks, clear expectations, accessible formats, and genuine acknowledgement – make a significant difference to people’s experience.

This Toolkit supports teams to:

• create safer, more inclusive involvement spaces
• show respect for lived experience contributions
• capture learning in a consistent and ethical way
• build confidence in running involvement activities

Who is it for?

The Toolkit is suitable for anyone involved in patient and public involvement, engagement or lived experience work – whether you’re just starting out or looking to strengthen existing practice.

If you want involvement to be meaningful rather than performative, this Toolkit is a practical place to begin.

About the Author

Aurora Todisco, is the winner of the Advocacy and Patient Experience Champion Award at the National B.A.M.E. Health & Care Awards 2025. She is a Finance, HR, and Governance Development Lead with over 21 years of experience, including the past 9 years dedicated to the health and social care sector. She brings a unique blend of strategic expertise and lived experience to her work, with a strong focus on improving patient safety, health equity and quality of care. Aurora holds a Postgraduate Diploma in Advanced Primary Care Management, which informs her systems-level approach to healthcare leadership. Since 2021, she has co-produced initiatives with nearly 90 national stakeholders, driving forward accessibility inclusion, and trauma-informed practice across NHS, academic and research settings. Actively involved in quality improvement programmes, accreditation panels and advisory groups, Aurora is passionate about amplifying patient and public voices to shape meaningful, system-wide change. Her work champions the power of real patient stories in creating campaigns that lead to safer, more equitable care for all.