Real voices, real change: how lived experience is shaping mental health support

This year's theme for World Mental Health Day, ‘Lived experiences heard: Real Voices, Real Change’, is an opportunity to reflect on what it means to listen meaningfully and, crucially, to act on what we hear to improve services.

Across this week, we've heard from the people who use their voice to shape our work and help us to transform mental health care for children, young people and families. This work is strengthened by the Lundy Model of Participation, which provides a framework for creating safe spaces for people to express their views, ensuring those views reach decision-makers and demonstrate how they influence what happens next.

To mark World Mental Health Day, we caught up with Erin and Skye - two of our Participation Programme Assistants* (PPAs). Together with project leads Jenna Jacob and Emily Rayfield, they shared details of two recent projects they have been working on together to create greater impact.

Bringing young people's voices into research

The London Vanguards evaluation

The London Vanguards provide trauma-informed, community-based support to help children and young people affected by adversity, including violence, to thrive. It runs across North Central, North East and South East London.

When NHS England commissioned Anna Freud to independently evaluate the London Vanguards, participation was embedded from the outset. Young people, parents and carers, and young partners with experience of the youth justice system helped shape the research and its recommendations.

Erin joined the core evaluation team as a peer researcher, working alongside Jenna. Erin contributed by developing accessible materials, co-facilitating a young people's advisory group (YPAG), analysing findings and shaping recommendations.

Her contribution challenged the assumption that lived experience colleagues need to share personal stories directly related to a project's subject to make a meaningful difference.

“I worked on this project with my lived experience driving me to question choices around language, delivery and the ways we present data,” Erin explains.

One seemingly small change illustrates the impact.

When reviewing the young people's information sheet, advisory group members questioned why researchers were introduced by their full names and job titles as Research Officers. For young people affected by violence or the youth justice system, they explained, this could bring to mind the police and make the evaluation feel formal, authority-led and unsafe.

The team removed surnames and references to 'Officer'. Erin also developed an accessible video using the revised wording and images.

This shifted the team's thinking from simply asking whether information was clear to considering what language communicates about power, safety and control. It is a reminder that professional decisions that seem straightforward can feel very different for the people services are designed to support.

From listening to practical recommendations

Participation also influenced the evaluation's findings and recommendations.

Young people and families helped the team understand how adversity is shaped by wider circumstances, including racism and social and health inequalities, rather than locating difficulties solely within individuals.

Young people highlighted the importance of discussing when support is ending, ideally up to six months in advance, setting longer-term goals of no more than one page, and making information-sharing boundaries clear from the outset. Parents and carers emphasised the importance of keeping families informed and approaching sensitive conversations with empathy and without blame.

The evaluation did not implement service changes directly. However, these contributions strengthened the evidence and recommendations, giving commissioners and practitioners more detailed, experience-informed insights to draw on when developing support.

Jenna believes genuine influence requires continuity and visible follow-through.

“As a core team member and YPAG co-facilitator, Erin brought lived experience into the approach, language, interpretation and risk discussions as decisions were being made.”

For Erin, the project also demonstrates the value of being treated as a colleague with genuine influence.

“I think the project has redefined how people with lived experience and research can work together collaboratively.”

She adds that creating change for young people has helped her grow in confidence and recognises that her potential is not defined by past negative mental health.

Putting parents' voices at the heart of early years support

Early Years Workforce Development

Participation is equally important in the earliest years of a child's life, when relationships and experiences help lay the foundations for future wellbeing.

Anna Freud's Early Years Workforce Development programme set out to develop a curriculum to strengthen early years practitioners' support for babies' and young children's social and emotional development.

Project Manager Emily Rayfield and PPA Skye worked together to ensure parents' and carers' experiences were embedded throughout the programme.

Drawing on her own recent experience of early years services and the challenges of early parenthood, Skye helped identify themes for discussion with a wider group of parents and carers. Through workshops and advisory group meetings, these experiences informed the Nurtures Charter, setting out eight key priorities for families.

The Charter then informed the curriculum, strengthening its emphasis on relationship-based practice, building trust, recognising dads and coparents, understanding faith and culture, and listening to babies and young children.

One parent's experience brought the importance of listening to babies into sharp focus. They described being asked during a health visitor appointment whether their child could walk – while the child was in the room, walking around.

This example captured how easily a child can become invisible in an appointment ostensibly about them.

It is a powerful reminder that meaningful participation must include those whose voices are least likely to be heard, including babies and young children. Their experiences and needs must be considered, even when they cannot express them in words.

For Skye, being part of the project meant being treated as a colleague whose contribution carried equal weight.

“It is easy to feel like you have a small voice when surrounded by professionals, but Emily and Alice ensured that I felt like a valued team member – I felt my voice held equal level of power in the room.”

She also saw the impact on parents and carers, who appreciated having the opportunity to share their experiences to shape the work and contribute to change.

“I hope it leads to better support for families with young children, shaped by the voices of those calling for change.”

For Jenna, hearing directly from those with lived experience holds 'infinite value'.

“It not only keeps the work grounded in the realities of the people it’s intended to support, but it reminds you why you’re doing the work, and what its true value is.”

Making participation meaningful: what can we learn?

Across both projects, a consistent message emerges: participation is most effective when it is embedded throughout the work, rather than treated as a one-off consultation.

The Lundy Model offers a practical framework, but meaningful participation also requires time, resources, trust and a willingness to do things differently.

Jenna's team learned the importance of closing the feedback loop, sharing what had changed and explaining when suggestions could not be implemented. Emily's team saw the value of having a PPA involved throughout the programme, bringing a lived-experience perspective to everyday decisions as well as specific activities.

These experiences demonstrate how participation strengthens the connection between research, professional practice and innovation. Lived experience does not replace professional or research expertise; it challenges assumptions, reveals overlooked barriers and helps ensure that what we develop reflects the realities of children, young people and families.

Find out more

Explore our lived-experience Champions programme.

At Anna Freud, we build participation opportunities across our work and translate what we learn into practical resources and training.

Our new Studio membership aims to support professionals to keep learning, reflecting, connecting with peers and engaging with emerging evidence.

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*Our PPAs are part of a pool of lived experience consultants. These are paid posts, available to work on projects that require more input from a young person, parent or carer than is viable on a voluntary basis.