Listening, learning and improving - Patient and Carer Stories Project | Our blog

“I became a Story Collector because I believe in the importance of truly understanding the experiences of those who have accessed our services at South London and Maudsley (SLaM). Collecting these stories allows us to highlight what’s working well and identify areas for improvement, ensuring that our strategy "Aiming High, Changing Lives" is making a real difference.”  - Aurora - Story Collector

Aurora — Story Collector

Stories have the power to change the way we see, think, and act. In healthcare, they bring to life the realities behind the data - the experiences that matter most to patients and carers, both good and bad. The Patient and Carer Stories Project was created to listen to those experiences first hand. By listening directly to service users and carers learning from lived experience, we can shape services that truly reflect the needs of our communities.

To capture the essence of the project, we created a short video that shares its purpose and impact: 

 

The project is built on a simple but powerful principle: stories matter. At the heart of every pathway or process is a person - and their experience must guide the way we shape and improve our services.

Its key aims are to:

• Build trust with our communities, especially those who are underrepresented.

• Nurture a culture of co-production, where service users are partners in shaping services.

• Improve understanding of patient and carer experiences among staff, highlighting both strengths and areas for improvement.

• Use these insights to directly inform service design, training and quality improvement.

The project began as a“You Said, We Did”  initiative, shaped by feedback from our Aiming High; Changing Lives (2021) workshops. Service users and carers told us the Trust needs to hear detailed accounts of their experiences, as surveys alone can’t capture the whole story. 

With funding from the Maudsley Charity, we developed a peer-led approach, led by Story Collectors - people with lived experience as service users or carers who have accessed services at SLaM. With training and support, they support others to share their stories. Story Collectors bring their insight into every stage of the project, ensuring it remains supportive, empowering, inclusive, and co-produced. 

Our analysis so far has shed light on what matters most in people’s experiences - from first contact to diagnosis, to relationships with mental health professionals and waiting for care. Their stories highlight the importance of empathy, clear communication, and trust in every interaction with mental health professionals. The stories also highlight where barriers still exist.

One storyteller, who sought help in crisis at A&E but was left waiting for hours due to a missed referral, shared:

“I felt like an absolute idiot… invisible… a burden.”

As a Trust, we believe that no one reaching out in crisis should ever feel unseen or unheard. Hearing this challenges us to reflect on the impact of our systems and processes and to share these learnings with colleagues so we can improve and re-build trust with anyone who has had a negative experience. 

Another storyteller described recovery through support at SLaM. They were supported to explore a range of therapies, giving them the chance to find the approach that truly met their needs:

“I was an utter wreck… but [the programme] completely changed my life. . You know, I stopped self-harming, I stopped taking overdoses, I stopped drinking and stopped the drugs."

This person's story shows how care can be life-changing when pathways work well - and gives us an example of good practice that we can replicate and embed through our continuous improvement and staff learning. Insights from the project have been included in our evidence-based analysis for our Strategy Refresh to ensure that what matters most to people underpins the strategy. 

We are collecting service users and carers stories, from service users and carers who have used services at SLaM, until mid-December 2025. Stories are collected anonymously and in confidence, by creating a safe space. You can share as much or as little as you want at a place and time that suits you. It is up to you what you decide to share.

• You can share your story face to face or online in a conversation with a Story Collector or a member of staff.
• You can also write your story by using this form: Patient and Carer Stories Survey
• You can learn more about the project here: Patient and Carer Stories - overview and here: Patient and Carer Stories - flyer.

 

The journey is not complete - but every story brings us closer to building services that are more responsive, compassionate, inclusive, and built in partnership with the people we serve.