Improving emergency care for people in mental health crisis: actions for change
Action five: Embed lived experience in improvement
Why this matters
People experiencing mental health crisis bring critical insight into what works and what does not. Programmes that embed lived experience produce more meaningful and sustainable change.
What works in practice
All programme teams engaged people with lived experience of a mental health problem and agreed this was a significant strength. The consistent themes identified by individuals with lived experience focused on improving communication, whether through regular updates or using eye contact, and applying empathy in all aspects of healthcare. Small changes were often seen to have a significant impact on an individual’s experience of care.
In terms of working with people with lived experience in improvement projects, teams consistently raised challenges around funding, ethical approvals and ensuring people felt safe and supported, particularly given the potentially triggering nature of ED-related work.
Tips from the teams
- Agree system‑wide processes for lived experience involvement from the outset.
- Ensure funding and payment mechanisms are in place early.
- Provide clear support, safeguarding and supervision, recognising the emotional demands of this work.
- Involve people with lived experience in a way that is purposeful and valued.
- Consider small changes that can make a significant difference to patient experience, for example more regular communication or not assuming a level of understanding.
Improvement work in progress
Dorset
In Dorset, the team established a structured approach to involving people with lived experience, designed to create a sustainable and consistent model for future work. Strengthening and using patient experience has been a core focus across both University Hospitals Dorset (UHD) and Dorset Healthcare (DHC), with patient voice embedded into routine operational and governance processes through peer led engagement.
The approach set out clear processes for how patient insights would be gathered, used and fed back, ensuring transparency and purpose. Information from peer and patient interactions is routinely captured and shared through mental health steering groups and senior leadership forums, enabling it to inform decision making across both acute and mental health systems. By integrating this feedback into existing structures rather than time limited initiatives, patient experience has become a sustainable driver of quality improvement, safety, and system learning.
A continuous feedback loop ensures contributors can see how their input has influenced change, strengthened trust and supported ongoing involvement. Crucially, combining patient experience with quantitative data provides a more complete understanding of service performance, recognising that insight from lived experience enhances the system’s ability to identify priorities and deliver meaningful improvement.
Kent and Medway
In Kent and Medway, the team set out to improve the experience of young people presenting to EDs in mental health crisis by embedding experts by experience (EbEs) throughout delivery. Seven EbEs were initially engaged through one hour consultations to inform project scope. Of these, three continued as core project members, each contributing to a task and finish group alongside professionals, marking a shift from one off consultation to sustained co production.
Feedback from the EbEs showed consistent positive outcomes:
- 100 per cent reported feeling genuinely included as equal contributors, rather than tokenistic participants.
- 100 per cent described meetings as open, respectful, and psychologically safe, enabling honest sharing of sensitive experiences.
- 100 per cent observed professionals demonstrating willingness to listen and adapt discussions in response to lived experience insight.
- 67 per cent highlighted structured debriefs and ongoing support as critical to sustaining participation and managing emotional impact.
Key takeaway
Improvement is stronger, more humane and more effective when shaped with people, not just for them.