Lived experience

This report uses the term ‘lived experience’ to describe the range of approaches that can be used by healthcare systems involve, listen to and work with the people and communities they serve. These include patient engagement, feedback and co-production (Wellings & Thorstensen-Woll, 2022). Integrating the voices of local people and communities is a central feature of integrated care systems (ICSs) and is crucial to building a learning health system. However, a 2023 report from the King’s Fund highlights that across England (Wellings & Tiratelli, 2023):

• Patient experience is not always prioritised within ICSs, including a lack of consideration of insights provided from patient experience compared to other types of data.
• There is not always enough capacity to ensure that patient experience is ‘everyone’s business’.
• There is a need for clarity within ICSs for who has responsibility for different aspects of lived experience.

Where possible, data about the experiences and outcomes of people who have used the services of local mental health services has been included in this needs assessment. However, it is nationally recognised that there is a gap in the collection of outcome data from mental health services (Department of Health & Social Care, 2023).

Where is lived experience collected?

• There are many ways to record and collect lived experience insights, including focus groups, surveys and personal blogs. The table below lists some of the key sources of lived experience insights that are collected.
• It is important to consider how well these approaches capture everyone’s voices: for example, national surveys may not be accessible or engaging to all groups.
• Integrated care systems need to understand the experience of individuals (who may have multiple needs and complicated routes to accessing care), rather than just experiences of people within individual services (Wellings & Thorstensen-Woll, 2022).

Methodology: Understanding Mental Health in Cambridgeshire and Peterborough

This Mental Health Needs Assessment (MHNA) used a qualitative approach to gather and analyse lived experience data, focusing on first-hand accounts and existing insights from the community.

How We Collected and Analysed Data

Instead of collecting brand new information directly from individuals, we built upon existing work. Here’s how we did it:

• Speaking to Key Organisations: We had in-depth conversations with various public and charity groups. Crucially, many of these organisations don’t primarily deal with mental health. We focused on understanding the mental health aspects they came across in their everyday work.
• Reviewing Existing Information: We collected and looked through a range of existing data from the organisations involved. This included things like case studies, video testimonies, reports, feedback from people using services, and statements from professionals.
• Pulling Out Key Themes: For each part of the MHNA, we identified the main themes and insights from the data we’d collected and then added them to the relevant part of the needs assessment.

Timescale and Reach

This process of gathering and analysing data took place over 10 months, from January to October 2025. Our approach was to draw on the extensive experience, relationships and knowledge of many key professionals and organisations across Cambridgeshire and Peterborough rather than undertake new one-off consultation work.

What does ‘good’ look like? 

Each integrated care board (ICB) is expected to have a system-wide strategy for engaging with people and communities. NHS England has defined 10 principles for how ICSs should work with people and communities:

1. ‘Put the voices of people and communities at the centre of decision-making and governance, at every level of the ICS.
2. Start engagement early when developing plans and feed back to people and communities how their engagement has influenced activities and decisions.
3. Understand your community’s needs, experience and aspirations for health and care, using engagement to find out if change is having the desired effect.
4. Build relationships with excluded groups, especially those affected by inequalities.
5. Work with Healthwatch and the voluntary, community and social enterprise (VCSE) sector as key partners.
6. Provide clear and accessible public information about vision, plans and progress, to build understanding and trust.
7. Use community development approaches that empower people and communities, making connections to social action.
8. Use co-production, insight and engagement to achieve accountable health and care services.
9. Co-produce and redesign services and tackle system priorities in partnership with people and communities.
10. Learn from what works and build on the assets of all ICS partners – networks, relationships, activity in local places.’

Ensuring people and communities are central to decision-making

There are many different frameworks for integrating lived experience, which may be useful for different projects (such as setting priorities or writing reports) (Greenhalgh et al., 2019). There are also multiple reports setting out best practice:

• The involvement of people with lived experience can be evaluated using the four patient involvement (4Pi) standards, which were developed by people with lived experience
• Co-production:
  • The SUN (Service User Network) report on Co-Production and Involvement Best Practice Guidance
  • Social Care Institute for Excellence’s report Co-production: what it is and how to do it
  • Nesta’s report Co-production: Right here, Right now
  • Rethink Mental Illness’s Model for Coproduction: a guide for Integrated Care Systems
  • How to… a guide to co-production in the NHS Web version Interactive PDF 
• Building meaningful partnerships:
  • National Voices has set out 6 key features which ‘support meaningful partnership between lived and  learned experience’.
  • The King’s Fund report on how to listen to and learn from people and communities
  • What Works Centre for Wellbeing has reviewed the evidence around community power and the impact on community wellbeing, including the enablers and barriers which can impact community agency
• NHS England has set out frameworks for the patient and public participation in commissioning:
  • Framework for patient and public participation in public health commissioning
  • Framework for patient and public participation in primary care commissioning

Integrating patient feedback

Patient feedback, including positive and negative feedback and informal comments, should be collected, analysed and interpreted. These findings should be accessible for staff, so they can utilise this feedback as a key ‘driver of quality improvement’ alongside other types of data to help understand what is happening within services (Kumah et al., 2017; Weich et al., 2020). However, too often:

• Patient feedback is not used to drive quality improvement (NHS Confederation, 2023).
• The data collected focuses on a single service or aspect of care, rather than looking at the experiences of individuals as a whole (NHS Confederation, 2023).
• The processes for embedding patient feedback vary both between and within NHS trusts, with national research highlighting that there is often insufficient use of patient experience data in inpatient mental health services (Weich et al., 2020).

Important Notes on Our Findings

While our data provides valuable insights, it’s crucial to understand its limitations:

• Tight Deadlines: Each section’s data collection was limited to just 4-6 weeks, meaning we couldn’t speak to as many people as we’d have liked.
• We received: a strong, positive response from many people with lived experience who were eager to share their stories. While we couldn’t include them in this current phase due to our limited capacity, their willingness highlights the importance of these perspectives.
• Narrow Focus: Time constraints meant we couldn’t explore every aspect of mental health needs in detail.
• Targeted Areas: We prioritised areas where less evidence already existed. Therefore, topics like perinatal mental health, autism, ADHD, suicide, and self-harm weren’t our main focus, as they’ve been, or will be, covered elsewhere.

Potential Biases

• Sector-Specific Views: Relying on professionals in certain areas (e.g., carers, homelessness) might have overemphasised their specific concerns, possibly missing wider mental health issues.
• Geographic Gaps: Data from particular areas might not reflect experiences across the whole of Cambridgeshire and Peterborough, especially as rural areas like East Cambridgeshire and Fenland had little input.

Applying Our Findings (Generalisability)

• Context Matters: Our findings should be understood within the limitations of how we collected the data. They offer valuable insights but might not apply to everyone across the region.
• Future Research: This report can help guide future research to gather more representative data.

Additional resources

• Health Innovation East Midlands have collated a range of Patient and Public Involvement Resources