26. The role of lived experience within health and social care systems

Briefing Paper

13 Aug

Written By Imroc

Deb Owen with Emma Watson and Julie Repper

Introduction

“Lived experience’s unique and in-depth perspectives are the catalysts for change
and transformation of all societal systems to become stigma and discrimination free, promote inclusion, promote life in the community, improve quality of life, respect for and protection of human rights, and empowerment of all persons with lived experience –ultimately improve mental health and overall health outcomes”
- Global Mental Health Peer Network (2021, p1)

This paper responds to the growing number of lived experience roles that are developing in health and social care in the UK and other countries. In these roles, relevant lived experience is used skilfully to inform and add value to how services operate, from frontline to leadership levels. The inclusion of lived experience roles into health and social care systems reflects a wider transformation in how we understand and respond to a range of human experiences and social challenges. It is informed by an understanding of the distinct contribution that experiential expertise can bring to service design, development, delivery and evaluation (Sartor, 2023), alongside academic, clinical or professional expertise. Lived experience roles are also aligned with ethical, rights and strengths-based approaches that have arisen from social justice movements and other areas.

Lived experience roles are emerging at a time when health and social care systems are in transformation and under pressure. Roles can be poorly embedded in organisations and often misunderstood or undervalued. The lived experience movement itself is not unified, and is developing in an uncoordinated and organic way. While it is partly a social movement, linked back to activists such as Judi Chamberlin (Chamberlin, 1977), it is also driven by agendas for improvement and efficiency, and the need to diversify the mental health workforce. Inherent tensions within this movement are playing out in spaces that are traditionally governed and where bureaucracy, hierarchies and more powerful models (e.g. medical) can dominate. The creativity that lived experience often generates can be hindered, particularly by financial and/or cultural barriers, leading to a loss of energy and impact.

As lived experience roles continue to grow within health and social care systems, it is essential that we have a clear understanding of why these roles are important and insight into the challenges and successes experienced. This paper will begin by exploring the drivers for including lived experience roles in health and social care systems, moving on to the value lived experience brings and how it can enhance existing organisational goals and future ambitions. We will provide an overview of the more common lived experience roles and offer some practical guidance for developing them, as well as discussing how to build a lived experience strategy. Our aim is to offer suggestions towards coherence and impact, so that the role of lived experience as an essential contributor to improvements in services will become self-evident.

This paper is not exclusive to any sector or service in its recommendations, but will draw on developments in the UK mental health context to critically consider the wider context and way forward.

Drivers for the Inclusion of lived experience perspectives

Driver 1: changes in attitudes and approaches to mental health and social challenges

How we talk about and understand mental health, disability and social challenges has changed significantly over recent decades. We are generally more open and mental health is higher on the agenda for schools, employers, universities, faith and community groups. Gradually this is creating space for people and communities to better understand their own experiences and needs and to seek support. There is also a strong trend towards self-management of care as part of population health approaches that aim to build individual and community capacity for wellbeing (NHS England, 2023a). Mutual support, both online and in communities, is more established, although groups often struggle for funding and resources.

Greater awareness and acceptance of mental health has been aided by educational initiatives, celebrity stories and charity campaigns. Films and TV dramas have explored the links between mental health, trauma and social inequalities. Different models of understanding mental health care increasingly accepted (if not by all), alongside the traditional bio-medical model.

The survivor movement and its allies have long campaigned for a radically different understanding of mental distress and disability. They argue that traditional biomedical approaches obscure the well-evidenced link between factors such as trauma, poverty, inequality and oppression and subsequent mental health and long-term conditions. This perspective widens our understanding of expertise around mental health and the solutions required and opens the conversation away from (clinical) expert and patient, toward a more collaborative, mutually respectful approach.

Driver 2: demand and dissatisfaction

While we have more awareness and understanding of mental health and other issues, the demand for support is not falling, but rising. Globally this is described as a mental health crisis, linked to population growth (WHO, 2022), and also to the Covid-19 pandemic and its aftermath. In the UK, a recent analysis from NHS benchmarking describes a system working at relentless pace to keep up with rising demand and referrals (Bell, 2024). The data also continues to reveal the inequalities within the population in their experience, access and outcomes, which intersect with socio-economic pressures (Davie, 2022). People with protected characteristics such as race, gender and age face significant inequalities in mental health, including higher rates of enforced treatment among those from BAME communities. NHS England have produced a comprehensive strategy to tackle mental health inequalities (NHS England, 2020), but there is a disconnect in the response. The Mental Health Act has been overlooked repeatedly for reform, and major strategies for mental health have been side-lined (MQ Mental Health Research, 2023).

As we can more easily access official guidance on clinical effectiveness and service standards (e.g. through NICE or Care Quality Commission), the push for greater evidence for effectiveness and value for money comes from all sides: consumers, activists, media, research, public health and commissioners. In health and social care, this has led to more question and debate, often driven by families and the media, particularly when inequalities, poor care or scandals happen. Momentum for action is high for those who feel the gaps and poor practice first hand, which is why lived experience perspectives have arisen from activist and survivor narratives. Lived experience draws on the collective energy of those who have been marginalised and ‘done to’, to come together to create alternatives and have influence over services, systems and society (known as ‘change agency’).

Driver 3: recognition that the user perspective is essential to improvement

In the UK mental health system, we still see too many inquiries into deaths and failures in care. In 2023, a rapid review and statutory inquiry into patient deaths in inpatient units in Essex, stated: “The insight and experience of patients, carers and staff is vital to understanding the risks and quality of care in services and should be integral to decision making at every level.” (Department of Health and Social Care, 2023).

This statement echoes every major review or inquiry into NHS failures over the last 20 years, in both physical and mental health. Why are we repeating this message and not seeing change? Why are we boosting measures to allow people using services to speak up in healthcare after such failures, when it is recommended every time to be built into to every aspect of service delivery and review?

It is not due to a lack of acceptance of the importance of lived experience in legislation, policy and guidance. At a global level the World Health Organisation (WHO, 2021, 2022) consistently promotes the lived experience and contribution of service users as vital for the effective design and delivery of services. At national and local levels the involvement of people who use services is widely accepted to bring about a whole range of positive outcomes, for individuals, practitioners and organisations (TNL Community Fund, 2019). UK legislation from the Health and Social Care Act (2012) onwards has embedded user involvement as fundamental to how services should operate.

In reality, the fact is that hearing and responding to patient experience at the most basic level is hard for large organisations to get right. That is because the balance of power in terms of whose perspective is utilised has not shifted anywhere near as much as was hoped for.

Underlying this, modern mental healthcare operates as an ‘accountable bureaucracy’, described by Armstrong et al. (2024) as ‘how mental healthcare is organised, sets priorities, determines what is and isn’t possible, shapes perceptions, directs what we call ‘attentional triage.’ It is the setting that explains why clinicians feel pressured and why patients find healthcare to be impersonal and uncaring.’ (p.13).

Driver 4 need to transform health and social care systems

All transformation is disruptive by nature and that disruption can be creative but also limiting, even damaging (Christenson, 2009). In the NHS, serious challenges exist for the whole workforce, with retention and recruitment challenges leading to understaffing, stress, burnout, poor care and patient experience. In response to the many failures and pressure to improve services in the UK, Integrated Care Systems (ICSs) have created partnerships that bring together NHS, local authorities and other organisations to take collective, localised responsibility for planning services, improving health and reducing inequalities.

Co-production and user involvement are recurrently prioritised in publications
that address the challenges for effective transformation of services (e.g. King’s Fund, Health Foundation, Point of Care Foundation). However, implementing co-produced change at organisational and system levels is a struggle, especially where the pressures on NHS funding and staffing are extreme (Limb, 2022). Even before these pressures mounted, The King’s Fund described the ‘fortress mentality’, where organisations act in the interests of securing their own continued existence, as a logical response in the culture of provider autonomy, competition and regulation (Ham & Alderwick, 2015).

It was hoped that putting the user perspective at the heart of transformation would break down the provider-dominated, insular cultures that were created and allow collaboration and partnerships to create more responsive services in local communities. However, there are more complex blocks to sharing power to negotiate. These require the more strategic and purposeful acceptance of the value of lived experience, as part of a deeper cultural change process to do so.

Deeper blocks to change

“The solution is often thought to lie in more money and mental health professionals. Remarkably, however, despite the amount of money spent on mental health care, the availability of mental health professionals in high-income countries, or mental health research as currently imagined, the crisis has not eased.” - (Patel et al, 2023, p.656)

Where transformation of services is proving a significant challenge, many people point to the huge pressure on the system, lack of funding and low staffing as the core barriers. However, systems are complex and the blocks to transformation and sharing power are multi-level. Even between different providers or teams, collaboration can be tough; when it comes to sharing power with those who use services, professionals can have limited training or experience. They may not be supported to share decision-making or take on new understandings of risk in a system that keeps itself safe through hierarchical decision-making and governance.

Carel and Kidd (2014) explored epistemic injustice in health care, noting that when people are ill, they are vulnerable to being marginalised and excluded by health professionals. Mental health care in particular is structured around power imbalances related to notions of capacity and coercion, yet resting on a diagnostic model which is not underpinned by convincing evidence (Patel et al., 2023). Beale (2022) describes
how, in the discomfort of gaps in ‘expert’ positions, services and practitioners have built up illusory notions of certainty around risk in mental health. She identifies how this gives professionals certainty in a space where there is little, categorising and excluding people to control demand. Palmer (2007) described this as a reversion to the authoritative, professional model, especially where there is a ‘tragic gap’ felt between what is and what could or should be. He described how institutions and professionalisation build a wall around practitioners’ true selves, leading to loss of energy for change and creative, new ways of being.

Berwick (2009) observed how professionals revert to process and structure to avoid complexity and the stress of not knowing how to help. In mental health and indeed any human service, there is a lot we do not know and may never know. Avoidance of complexity easily becomes avoidance of people using services or family members who are seen as ‘difficult’, ‘hard to reach’ or ‘resistant’. Avoidance of complexity can also be seen in resistance to partnership working or systems thinking. Stigma extends to clinical staff themselves, where openness about their own mental health can be discouraged and discrimination can occur (MIND/BMA, 2021). All these barriers, within and without, prevent collaboration and openness to new perspectives and lead to self-protective behaviours, simplistic concepts of blame and failures to learn and adapt.

In the face of such challenges, lived experience has great value when it is utilised by professionals and teams to explore more adaptive ways of working. People with lived experience can become experts in managing the discomfort of Palmer’s ‘tragic gap’, and will often be the ones to name and address such gaps. However, it is not an easy process for people in complex systems to share power to co-create meaning (Mead & MacNeil, 2005), and can present a challenge to people at all levels and positions. The inclusion of lived experience is, therefore, an important way for systems to develop ‘change literacy’ as it can enable new ways of thinking in a process which requires:

Being curious about resistance and valuing all feedback.
Reflexivity in relation to the process not just outcomes.
Being comfortable with the uncomfortable and expecting differing outcomes
Identifying and exploring hidden power. (NHS England, 2023b)

This kind of co-productive and creative work is happening in many places and is more sustained in some areas, particularly where the infrastructure for lived experience leadership is developed and connected into shared decision-making in an organisation.

Evolution of a co-creation Board: A collective progress Chris Morton, Lived Experience Director, Tees Esk and Wear Valleys NHS Trust

We established the ‘Co-creation Board’ in direct response to an urgent need for innovative approaches to organizational service design, delivery and evaluation, especially under the lens of significant scrutiny and feedback from people who use our services and stakeholders. From the outset this was a collaborative space where people who use our services, carers, staff, and community representatives could unite as equals, challenging the existing power dynamics inherent in NHS organisations. Our vision was clear: to ensure our services are not only responsive, inclusive, and personalized but also bridge the identified gaps in patient engagement, transparency, and the connection between service providers and users.

Embracing Challenges and Opportunities

From the Board’s inception we engaged in workshops that defined our structure, objectives, and operational framework. These initial stages, crucial for navigating diverse stakeholder expectations and visions, required ongoing negotiation to achieve consensus on our purpose from across the groups of people that use our services, carers, voluntary and community sector. We faced some daunting challenges in the complexities of advocating for substantial service changes within the Trust, alongside ongoing practical concerns like equitable access to information technology for our members and fair remuneration. However, these hurdles reinforced the importance of fostering a culture of partnership, enhancing decision-making transparency, and driving service improvements by blending lived experiences with professional expertise.

Gaining Influence and Formality

Over time, our group has evolved from a fledgling committee to a more influential and formalized body within the care group. However, there remains a continuous drive to not restrict our creativity or freedom; rather, it’s provided a structured platform for our voices to be heard more clearly and for our recommendations to be taken seriously. Our increasing influence has allowed us to contribute significantly to areas critical to our community’s well-being, such as improving safety on our wards, advancing equality, diversity, and inclusion, personalising care, and shaping business planning.

Achievements: Marking Milestones and Impact

The Co-creation Board has been instrumental in catalysing key areas of improvement and innovation within the Trust. Noteworthy achievements include:

Enhanced Service Design and Delivery: Our efforts have significantly shaped the Trust’s approach to business planning, influence the focus on making them more responsive and person-centred.
Advancements in Equality, Diversity, and Inclusion: We are championing initiatives that prioritize equality, diversity, and inclusion, ensuring these principles are central to the Trust’s culture and practices.
Safety Improvements on Wards: By focusing on what makes safer ward environments, we’ve contributed to ongoing person-centred approaches in patient care, rethinking risk and enhancing the overall experience.
Personalising Care Planning: In taking the lead in the Trust’s approach to moving away from CPA, our advocacy for personalised care planning has been pivotal in advocating that care strategies are tailored to individual needs.

Looking Ahead with Collective Determination

The path ahead is undoubtedly complex, marked by both internal and external pressures, including embedding meaningful influence and responsibility, but our collective commitment has never been stronger. In reflecting on our progress and the road ahead, it’s clear that the work of the co-creation board is more than just a series of meetings or recommendations. It’s about building on the integration of evolution of lived experience and co-production, facing the current challenges with resilience, and contributing to a national conversation on the future of mental health, learning disabilities, and autism services. Together, we are not just witnesses to change; we are its catalysts.

The value of lived experience to health and social care systems

Success in the integration of lived experience into health and social care systems rests on a deep appreciation of the value that lived experience can add. In the previous section we have seen this arise from the many challenges for organisations to deliver value in an increasingly fraught landscape for health and social care. In this section, we will examine the many benefits that can be produced from lived experience in order to build adaptive and collaborative capacity among individuals and across systems more widely.

The diagram below connects the various layers of possible benefit with the collective impact of including lived experience in health and social care systems. It is drawn from a public health logic model (adapted from Skelton-Wilson et al., 2021) which is a way of identifying and describing how critical aspects produce change through causal relationships. A logic model represents, in a simplified way, a hypothesis or ‘theory of change’ about how an intervention works (an intervention being any new, organised input into a system). The model below illustrates the overlaps and ripple effects in the potential benefits and impact of lived experience, through the development of individual, community and organisational capacity for change and resilience.

**Figure 1:** an illustration of the layers of benefit and collective impact of including lived experience in mental health and social care systems.

Adapted from a 'Logic Model of Lived Experience Engagement Initiatives' in Skelton-Wilson et al., 2021.

The original US logic model was created as a response to the limited amount of research into lived experience initiative impact and was based on an environmental scan of federal engagement initiatives, key informant discussions, and consultations with lived experience experts. It shows how lived experience work can build future capacity to meet both individual and community needs, and by doing so, impact on established markers of effectiveness and quality for provider organisations. In the current climate, the biggest impact of including lived experience roles for organisations could be through improved staff retention and efficient use of funding. This may occur when the inclusion of lived experience perspectives leads to more understanding in a service on what works well for clients, leading to more focus spent on improving experience and delivering more effective support. This in turn leads to greater staff satisfaction for the wider team, through more sense of meaning, purpose and impact in their own roles.

The New Economics Foundation (2008) described how, to realise the benefits of including lived experience, organisations need to adapt from a ‘provider perspective and status’ to become instead ‘catalysts and facilitators’. This includes treating people in communities as assets and ‘using peer support networks instead of just professionals’ as the best means of transferring knowledge and capabilities. In other words, effective change relies on a real and genuine sharing of lived and learnt expertise and cannot be achieved through a provider perspective alone.

Returning to the logic model, future and currently unknown goals could be met by improving culture and partnership working, allowing for more asset-building through co-productive, creative solutions. The system that we experience now could evolve and develop to meet needs in ways not yet expected. The linking of benefits, energy and assets from the individual, to community, service and organisation allows us to appreciate how system wide transformations can be driven through the inclusion of lived experience.

Organisational agendas that can benefit from the inclusion of lived experience

The logic model helps us see how lived-experience could bring about collective benefits, creating momentum and ripple effects of change. Including lived experience is a way of addressing several agendas simultaneously, or at multiple levels, because it is aligned with what people who use services prioritise, and at the same time integral to markers and enablers of improvement and governance for health and social care organisations.

Agenda 1 Experience as part of Quality

Quality as a marker of operational performance in healthcare includes patient safety, clinical effectiveness and patient experience (NHS England, 2022). The Institute of Health Improvement also embedded ‘experience of care’ in its original Triple Aim for population health (IHI, 2008). The ‘experience’ part of whichever model is often neglected however, sitting alongside the more professional domains that are more heavily scrutinised. Experiential measures are more difficult to meaningfully employ, and organisations can lack resource or expertise to focus on how to use the information taken from these.

Yet, all healthcare organisations need to measure experience, improve experience and use feedback and co-production to do so. In fact, ‘co-production is the default for improvement’. (See image on the next page)

**Figure 2:** NHS England’s (2022) key principles of delivering the best possible experience of care

When planning for the delivery of the best possible experience across a health and care system or within a provider, there are 3 key principles that should always be considered:

The guidance explains that systems can improve the experience of people using services by:

Starting with what matters most to people who use and work in services.
Working with people who have relevant lived experience and with staff, in everything they do to directly connect with multiple and diverse voices.
Building equal and reciprocal partnerships with people who have relevant lived experience and staff, including with those from disadvantaged and minority communities, from the very start of, and throughout, all of their work
(NHS England, 2022).

Many organisations struggle to deliver on the above goals, and it takes dedicated resource and capacity that links strongly to the experiential and relational skillset inherent in lived experience roles. Later we will explore this through more examples of lived experience roles that operate at a higher and systems level with these strategic remits.

Agenda 2 Diversity

By employing people with lived experience in any role, organisations start to address issues of equality, diversity and inclusion. Evidence shows that diversity in any team or workforce enables better decision-making (Larson, 2017). Studies also find improvements to innovation, team communication and risk assessments, as well as financial performance, through diversity in the workforce (Gomez & Bernet, 2019). Quality Improvement (QI) techniques focus on divergent thinking and collective problem definition because they generate more successful improvements (also by involving those closest to the problem). Lived experience roles are well aligned to these methods. Divergent thinking and co-creative methods allow for a process of ‘emergent learning’, by challenging established assumptions and frameworks for understanding complex issues. Everyday examples of this are shared decision-making and collaborative care planning, which are hard to achieve meaningfully in purely provider-led approaches.

Achieving true diversity is only possible through learning from people who come from groups traditionally marginalised and/or excluded within services. It is likely that people with lived experience are more likely to come from disadvantaged backgrounds, to have experienced barriers to education or employment and to have experienced stigma and prejudice. However, these barriers also mean that lower numbers of marginalised groups are represented in lived experience roles. To fully harness the power of diversity, organisations need to embrace ways of working in partnership with communities and increasing the accessibility of the roles they create (see Perkins and Prakash (2024) for a recent case study of this in action.)

Agenda 3 Collective action, innovation and new value

Increasing diversity can lead to more than effective decision-making, it can create action and change, building focus, momentum and energy for all involved. The power of embedding user perspectives in provider-led spaces and structures aligns with organisational change concepts such as systems thinking and collaborative leadership (Walsh & de Sarandy, 2023) that aim to address hierarchies and siloes by opening up dialogue around change and value.

The outcomes for including lived experience roles into the workforce need to be measured not just in how existing systems or services are improved, but through the new ideas and value, including ownership, energy and partnerships, that are created. Momentum and energy can create new value beyond what was previously framed as important. In an evaluation of a patient-led cancer support centre, Poblete et al. (2023) found that centring lived experience ‘served as the basis for a social innovation that can play a new, intermediary role in the liminal space between institutional care and other social functions and thus move the perspective from delivering healthcare to improving wellbeing’ (p.47). An evaluation of the same centre (Smith et al., 2021) found that this approach brought with it six clear types of value:

Community for me and my relatives

New knowledge
Creativity
Exchange of experience
A gathering place for activities
Provides energy and strength.

People with lived experience tend to understand these types of value naturally, as they have meaning for their ‘whole life’ or community, allowing relationships to develop for mutual support, growth and development. By exploring the value created by the inclusion of lived experience, we see these types of value can create a ‘ripple effect’, having impact in more than one part of someone’s life or in the way provider teams function or a service is delivered. The ripple effects become stronger when people in different roles in a system take a part in co-creating change. This speaks to the motivational and relational value that drives people to act together to improve, rather than wait for permission to act in a hierarchical system.

In mental health, that hierarchy of knowledge and power is ingrained through decades. Despite often a lack of evidence some types of knowledge (e.g. medical) still dominate. Professor of Global Health, Vikram Patel (2023), places lived experience within the context of the global need for a different mental health system to the one that currently exists, one which puts the user perspective fully at the centre and moves away from a provider-centric model. The current policy of Integrated Care Systems in the UK has gone some way toward repositioning lived experience, but we have a lot further to go. To be part of this kind of system change, people with lived experience need to be recognised and able to contribute in designated roles, where they can develop skills, trust and influence in systems.

Markers of success: lived experience presence, literacy and expertise

While the importance of including lived experience roles is more widely understood, it remains difficult to ensure that all roles are included meaningfully, and that the organisation as a whole
truly understands their value. Contributing to this debate, Byrne et al. (2022) describe a ‘whole-of-organisation’ approach to including lived experience, aiming to build organisational capacity in order to embed and sustain the total value of these roles. They have identified three strands of focus and activity in order to achieve this:

Developing and supporting lived experience across the whole workforce (presence)
Creating organisational understanding of the value of lived experience (literacy)
Developing ways of utilising lived experience to maximise influence and impact (expertise)

Lived experience presence describes the number, and visibility of, all the people who have lived experience in an organisation. This includes those in specific roles to use their lived experience, as well as staff in any role, and can include partners and stakeholders. Presence is strongly connected to diversity approaches and similarly, an accurate view of lived experience presence requires organisational capacity to measure it. However, outside of designated lived experience roles, it is a matter of personal choice whether to declare lived experience; it is widely acknowledged that due to stigma and lack of support many employees choose not to (MIND/BMA, 2021). There are also debates as to what constitutes lived experience (these are covered with respect to role development later on). Therefore, measurement relies in part on the culture, visibility and support for lived experience through a focus on ‘lived experience literacy’.

Lived experience literacy describes how confident all staff and the organisation itself are in recognising, supporting and learning from lived experience. It is woven through the organisation’s culture, and relies on accessible and inclusive employment processes, as well as an acceptance of the benefits of diversity and co-production for the whole workforce. Lived experience literacy is allied with the idea of ‘anchor institutions’ in a community, where the NHS or local authority strive to be accessible employers to address inequalities in employment and service provision (The Health Foundation, 2019). Lived experience literacy also includes the capacity of the organisation to listen, involve and learn from the people using its services in its service delivery, improvements and outcomes. This relies on a cultural understanding of the ‘user perspective’ as a driver for change through lived expertise.

Lived expertise (or lived experience practice) is a developed skillset including the capacity to connect, listen and involve people using services in order to create change at many levels. The next section explores how this practice or expertise can be developed and have impact in different roles. Overall, as we explored already, without the development and utilisation of this expertise (or understanding of it), organisations often struggle to fully integrate patient or user experience as a driver for improved quality.

With these strands of activity in mind, we can begin to explore the practicalities of developing and supporting lived experience roles within health and social care systems. This includes developing organisational strategy, understanding the challenges and barriers to developing specific roles, and appreciating the different roles that can be occupied by people with lived experience.

Designated roles for lived experience

While specific skills are required for each lived experience role, the focus of all the roles is on the use of experiential and relational knowledge. The goal is to recognise lived experience expertise as an equal form of knowledge alongside more accepted bodies of knowledge, such as clinical or operational. Where a lived experience role is more senior, there may be a greater requirement to draw on additional sources of knowledge and expertise, such as research or management. However, the focus on the experiential and relational expertise always remains the primary ‘lens’.

The concept of lived experience and how it can be applied can be contentious even within the lived experience movement, due to the lack of hard definitions for this lens. Everyone has their life experience of course, but when does it become ‘lived’? What matters is not just the experience of adversity but the intention and capacity to use it to work with others, individuals and organisations to enable change, to inspire and mobilise.

When lived experience roles are created, questions about eligibility and fit can arise. For example, does a claim to lived experience require a specific diagnosis, a use of ‘secondary’ mental health services or an inpatient stay? Does it include those who avoid services or those who have been excluded? Does it include family or friend carers? The answers to these questions differ from role to role. In some situations, a particular experience or diagnosis is an essential component of lived experience, for example with carers, or in substance misuse or perinatal services. In other roles, there is not the same need to specify so tightly the nature of lived experience. There is an understanding that lived experience of a ‘life-impacting’ nature enables a person to connect and relate to the experiences of others in a way that is effective within their role. With some exceptions where specific experiences or diagnosis are important, tightly defining lived experience is unhelpful and can lead to more systems of exclusion or ‘them and us’ divides. Likewise, an absence of ‘a position’ or leadership in lived experience recruitment and role development, can create confusion, role drift and lack of clarity. We recommend working in partnership in systems to co-create guidance on lived experience recruitment based on experience of best practice for successful impact.

Some common lived experience roles

Some examples of common roles are described below, noting that this list is not meant to be exhaustive. The titles assigned to lived experience roles differs significantly across service setting, culture and country. For example, titles such as ‘peer mentors’, ‘lived experience practitioners’ and ‘peer specialists’ are becoming more commonplace. Each of these roles will differ slightly in their responsibilities and working context (see Roennfeldt et al., 2019). Carer or family lived experiences can be specifically drawn upon in each category and are an important category of lived experience roles in their own right.

Experts by Experience, Co-production or Participation Partners and Leads

There are many titles that can be used to describe lived experience roles that contribute to service development, and they vary across organisations. Expert by Experience (EBE) is a common title for those who use their own lived experience, as well as other skills, to work with services as part of improvement and change programmes. EBE involvement can range from informal and voluntary to formal and paid. Many organisations have policies and structures to develop and organise this involvement activity, including training, induction, supervision and payment schemes.

Co-production activity has some overlap with, but is distinct from, public involvement in health and social care (often more limited to capturing ‘insights’). All the roles under this heading should serve as active partnerships, with the lived experience perspective sitting alongside and working with other (provider or clinical) perspectives. When the work is more in depth, opportunities can arise for people to develop or use other skills, such as networking or project management. In organisations where there is recognition and resource, more senior roles have developed, often to provide mentoring, supervising and training for EBEs and/or work with stakeholders to facilitate strategic joint working in systems.

The experience of an expert by experience lead - Raf Hamaizia

Raf Hamaizia is Expert by Experience Lead at Cygnet Healthcare, an independent provider of health and social care services for mental health, acquired brain injuries, eating disorders, autism and learning disabilities within the UK.

In his role Raf uses his own experience of using secure care services alongside well-honed skills and advanced networking. The role is well integrated within the leadership and governance structures; as Raf collaborated with the Director of Nursing to shape and improve the organization’s service user involvement structures on both a local and group level. This enabled him to implement a number of initiatives within Cygnet Healthcare including ‘The People’s Council’ and Cygnet Experts by Experience (EBE) programme. Recognised by both the CQC and Royal College of Psychiatry, these programmes are an example of how an organisation can embrace co-production and the value of lived experience.

Raf says: “The programme is about giving service users a voice at every level of the organisation, providing hope and inspiring others. We help shape discussions and act as a reminder to consider and incorporate the fundamental lived experience perspective.
The role is about creating change and representing views, with elements of peer support and advocacy being part of our day to day. From a modest beginning with three EBEs, Cygnet now boasts a team of over 30, supported by hundreds more, whose insights can be tapped into through the extensive networks of our support organisations. EBEs are in board meetings both regionally and nationally, and inform everything from co-producing training, initiatives and policy to recruitment processes, guidance and quality improvement projects.

This growth hasn’t been all about numbers though; we now have the ability to make a bigger impact through fostering positive and inclusive cultures on a national level. Externally, our team has been involved in everything from the Independent Review of the Mental Health
Act, the Rapid Review into in-patient mental health services and numerous pieces of national guidance and legislation. I am eagerly anticipating a future where Experts by Experience play an increasingly pivotal role in shaping national policy, fostering positive cultural change and making sure services continue going above and beyond with lived experience perspectives at their core.”

From Hamaizia, R (2024) Real world expertise shapes the very best care - Social care (blog.gov.uk)

The role of a Lived Experience or Co-production Lead requires an additional set of skills and experience in order to work at strategic and system levels. Considerable work is needed to achieve meaningful co-production, which Arnstein (1969) describes as the top rung on a ladder of participation (the ladder moves from no or minimal input, to greater positions of equity and influence in decision making). Leadership roles in this area specialise in navigating inter and intra organisation dynamics as well as issues of inclusion, equality and diversity (Tritter & McCallum, 2006).

Peer Workers, Peer Support Specialists and Peer Mentors

Peer support is a way of working together founded on the principles of respect, shared responsibility, and mutual agreement of what is helpful (Mead et al., 2001). There is growing evidence of the personal, economic and social benefits of peer support (White et al., 2020; Gillard et al., 2023). Early reviews of the evidence for peer support found that it led to wider ranging benefits, including reduced admission rates (resulting in cost savings for services), stability in recovery, increased functioning, hope and acceptance (Trachtenberg et al., 2013; Davidson et al., 2006; Resnick & Rosenheck, 2008). Incorporating peer support into mental health services can lead to more empathic, holistic, and culturally sensitive care that actively results in improved outcomes. Peer workers also serve as a ‘bridge between the mental health system and the patient to improve service delivery’ (Chinman et al., 2010).

While the evidence base for peer support remains robust, these findings have not been replicated to the same degree by more recent studies. This may be, in part, due to the difficulties associated with gathering evidence. Peer support is required to be defined as an intervention with anticipated outcomes, rather than a relationship where recovery goals are personally defined (Watson, 2019). Consistently though, peer support has been found to lead to a positive impact on psychosocial outcomes, and on self-reported recovery and empowerment, as well as broader service benefits such as reducing readmission (White et al., 2020; Cooper et al., 2024; Gillard et al., 2023).

Peer support roles in mental health represent the biggest emergence of new lived experience roles into the health and social care workforce, with marked growth in the US, Canada, Australia and the UK. Major developments in the UK followed the targets set in the NHS Mental
Health Implementation Plan (2019). Delivery was supported by the ‘new roles in mental health’ programme, with funding for training programmes and organisational development and the creation of a competence framework (Health Education England, 2020).

Since then, from a low starting point, the UK has seen a significant growth in the number of roles (NHS Benchmarking, 2023). Various models have emerged, with peer support roles often embedded in statutory services either through direct employment or partnership models, and in other places provided directly by the third sector, for example peer-led spaces such as crisis houses. A detailed review of the progress, challenges and successes of this growth in roles across systems identified issues concerning peer leadership, organisational cultures and conflicting ideologies of what peer support should look like (Watson and Repper, 2023). The implementation targets gave no direction on where roles should sit or how they should connect in systems. It also focused on entry level roles only, with little thought for capacity to develop peer led services and communities of practice. However, the increasing recruitment of peer support workers has highlighted a growing need for more senior or lead peer roles to support workforce growth, practice development and systems readiness.

It can be a challenge for this need to be recognised but where it is, Peer Support Leads or Senior Peer Coordinators provide training, development and support for peer roles. Other roles have developed to be more specialised in their practice. Figure 3 (on the next page) is an extract from taken from a person specification for an Advanced Practitioner lived experience role illustrates the need for senior peer worker roles to be undertaken by those with both lived experience and the additional skills such as training facilitation, supervision, public speaking and strategic leadership (from a NHS Trust, 2023). This mirrors the roles of advanced practitioners in other professional areas.

Ball and Skinner (2021) explored the various progression routes in peer work. They advocated for different routes which were either practice based or managerial, so that career progression in peer support could encompass both.

**Figure 3:** extract from a person specification for an Advanced Practitioner lived experience role

Peer or Lived Experience Researchers

Peer and lived experience research is a participatory research method in which people with lived experience of the issues being studied take part in directing and conducting the research. Like other lived experience roles, power sharing in peer research is a key part of the role.

The Young Women’s Trust (2022) describes peer research as “a mutually empowering process that amplifies the voices of those furthest from power, unifies communities, and catalyses change through the power of shared experience.” They also highlight the power of peer research to capture rich and meaningful data, including insights into the experiences of people from minoritized communities. Being involved in peer research equips peer researchers with specific and transferable skills.

Peer research challenges the traditional paradigm of academic expertise, including the idea of
the researcher as a detached, neutral observer. It positions lived experience as offering a unique standpoint, which enables rich understanding of the issues under study and alters both the method of enquiry and the outcomes that are drawn. It raises the questions of what is good evidence? What is a good outcome? What is quality? and Whose knowledge is valid?

The experience of a peer researcher - Dr Sam Robertson

Dr Sam Robertson is the Lead for Patient and Public involvement in research (PPI) and for the AIR (Approaches to Involvement and Recovery) research theme at Sussex Partnership NHS Foundation Trust.

“I make no apologies for doing research from an ‘insider’ perspective, and it is my life’s work to chip away at the more conservative attitudes and structures in research. In particular, I believe that qualitative methods of developing research evidence can provide much subtlety and richness that RCTs (Randomized Control Trials) and other quantitative studies miss. This work is important to me - a reflection of my lived experience and who I am.
My lived experience of mental health ended my career as a teacher and started a period
of nearly twenty years as a service user. Service user involvement got me back out into
the world and gave me purpose. Initially as an expert-by-experience (and then in a role
as Involvement Co-ordinator), I began to develop a new identity as a service user/survivor activist. I was involved in setting up and delivering a peer support training programme and a recovery college. This work required me to develop and deliver my recovery story, as well as helping other service users to do likewise. I became aware that in asking people to do this we were only really interested in their content, and not the emotional impact of developing and sharing our recovery stories.
My PhD was in personal narrative development and its contribution to recovery, and its starting point was an autoethnography. Recently I was awarded an Individual Development Award for a study exploring the Emotional Labour of peer workers within the Trust. It will support me to develop a Centre of Excellence for Peer Research and a community of practice for peer researchers.”

Adapted from https://arc-kss.nihr.ac.uk/news/case-study-dr-sam-robertson- shapethefuture also see Robertson et al. (2024)

The inclusion of lived experience perspectives in mainstream research, especially in mental health, is growing. Ethics applications also routinely ask researchers to specify how they have involved people with lived experience. The Lancet Psychiatry is now requesting that authors provide information on whether and how people with lived experience were involved in or led their research and studies. Research that is carried out without lived experience involvement would need to acknowledge this as a limitation - (Davis et al., 2024).

Peer Educators, Facilitators or Trainers

Recovery education models such as Recovery Colleges and Academies are well embedded as an approach to facilitating recovery through learning both in the UK and internationally. The most important elements of recovery education are that they create opportunities for people to
be active participants in their own health and wellbeing, as students or learners. In addition, the learning must be co-produced and co-created by experts by learning (‘professionals’) and experts by experience (‘peers’), often challenging the traditional norms of knowledge originating in academia and medicine. By co-creating learning spaces people can ‘experience a different sort of relationship that challenges unhelpful practice, attitudes, behaviour and prejudice by modelling a different conversation and understanding’ (Perkins et al., 2018, p1). Through this approach recovery colleges aim to be part of the transformation of traditional expert-led services and part of the drive towards broader organisational change.

There are also lived experience educator roles outside of this model, within training organisations and in academic settings. Educational courses may have a lived experience advisory group who support teaching and the development of teaching materials. Wherever peer educators are working, they use skills in teaching, such as facilitation and lesson planning, as well as their lived experience and awareness of power dynamics, working as equals in the educational space.

Recommendations for developing lived experience roles

Whatever level they are at on the career trajectory, there are some fundamental questions which need to be asked in order to successfully develop lived experience roles, promote meaningful and safe inclusion and deliver impact. It cannot be stressed enough that responding to these questions requires dialogue and authentic input from user, carer and provider perspectives. We suggest the following questions would be helpful to consider as a service or wider system, with people using services, team members and partners:

Fundamental questions for new role development

Which people and communities will the lived experience role be representing, supporting or connecting to?
What sort of lived experience is needed to be able to do this?
What skills and experience are needed for this?
What support will there be for potential applicants to understand the role and develop these skills?
Which organisation does the role sit best in, and how does it connect to the system?
What training should be provided initially, and what development opportunities are there?
What does the team, department, or organisation need in order to embed this role?
How will all involved (including clients and carers) understand the role?
How will this role connect and work with others? (e.g. partner organisations, peer networks, senior leadership)
How will this work be visible and how will we know it is successful?
How will the organisation, team or service measure and understand the impact?
How will this role be supported and embedded to achieve its goals?
How will lived expertise be used to inform the impact of the whole service?
How will this role connect to, learn from and build on, other lived expertise in the organisation and system?
How will the job description describe the required values, experience and skills for the role?
What position in the pay scale will the role be placed at? How are the knowledge and skills required aligned with other roles in the organisation and system?
How will the interview and selection process be made accessible? How will we recognise other forms of development as equal to professional qualifications?
Who can be enlisted internally or externally to support recruitment from a values based/lived experience perspective?
What might be some progression routes beyond this role?

While these questions may seem extensive, it is important to take time to consider every stage of the development of lived experience roles. This will save time and pre-empt challenges in the long term that many others have experienced. For reference, there is a growing resource of published guidance on how to develop specific lived experience roles from different countries, regions and areas of health and social care (e.g. TNL Community Fund (2021), Repper (2014), Ash & Otiende (2023), National Mental Health Commission (2023)). There are also lived experience leadership networks developing to support this work across systems and communities (e.g. LEAD - Lived Experience Advisory Directory, GMHPN - Global Mental Health Peer Network).

A ‘patchwork’ journey in lived experience work - Mel Ball

Mel Ball is the UK’s first NHS Trust Board Director for Lived Experience at Midlands Partnership NHS University Foundation Trust. She holds responsibility for Board leadership on co-production & involvement, the peer and lived experience workforce, and multiple Wellbeing & Recovery Colleges which operate across the Trust. Mel also provides Board- level sponsorship for a number of initiatives such as the NICE Guidelines on Shared Decision Making and the Trust’s commitment to ‘Ask, Listen, Do’.

Mel started her career as a peer worker in a therapeutic community and spent much of her early career facilitating co-production for and with the NHS. She has also worked nationally/ internationally as a public speaker, trainer, researcher, supervisor and consultant, and taught at a number of universities on various topics related to lived experience practice and peer work. She was overseeing one of the country’s largest NHS based peer workforces prior to moving into her current role. Speaking of her career trajectory:

“I am intensely aware that I served a coincidentally relevant apprenticeship in preparation for my current role, though it was entirely a path developed as I walked it. I gained each next opportunity due to a combination of luck, ‘right time right place’, a pretty relentless pursuit of doing this work as opposed to a non-lived experience role and endlessly knocking on doors and occasionally having those doors opened by folks who were good enough to support me. Every step of my career to date set me up well for this role but I have often wondered how I would design this developmental pathway in order to prepare others to step into roles like this, when my own journey was so ‘patchwork’? It’s a complex challenge but I’m keen to develop solutions that ensure more opportunities for others, (and whilst I might not regret my own journey, ideally others would have to navigate a less perilous route!).
Governance and the full mechanics of a large NHS Trust from a Board-member’s perspective are undeniably denser and were more invisible to me in previous roles than I had fully accounted for. And for the role to be meaningful in these spaces, naturally I have to be competent and confident in my understanding of how all these systems work to consider my contribution to them. It’s still relatively early days but I feel encouraged that some of my closest colleagues assure me that when they are asked how I am getting on, that they give their perspective with a caveat of “we are all on this journey, though, this is about all of us changing the way we work for this role to really thrive and be meaningful”. That feels key.
To understand co-production and what it means to bring lived experience to an organisation’s Board and leadership team it is absolutely imperative to have the buy in for this, I would say. Just like with entry level peer support work, team readiness, with the right culture and level of psychological safety, is paramount.”

The thoughtful development of individual roles needs to be rooted in a clear understanding of the value and benefits intended, but also the potential challenges for people coming into and working in new lived experience roles. The next section reviews some of the frequently experienced challenges.

Challenges for lived experience roles

While there is a great deal of diversity within lived experience role delivery, many face common challenges. The success or failure of lived experience roles (like any role) relates to how well-embedded and supported they are, and how much influence and connections they have to deliver.

This has been challenging to create where the workforce is still ‘young’ in its development, and can
rely heavily on the continued moral and financial commitment of systems and organisations. This is challenging both for statutory systems, which may not prioritise the work as essential within increasingly tight budgets, and for independent lived experience organisations which often lack the security of ongoing funding (NSUN, 2020). This inequality and insecurity in capacity of providers can seriously impact the strategic development of roles.

Another continuing factor is the capacity for system leaders and provider organisations to embrace and trust the lived experience perspective. This could come from a poor understanding of the potential value and benefits of lived experience, and possibly the fear of the ‘non-corporate voice’ disrupting the (already precarious) status quo. Embracing discomfort and discord is challenging, and those involved can often feel the tragic gap between what ‘is’ and what ‘could or should be’.

It is important to note that challenges for lived experience roles do not play out in isolation and are linked to the wider challenges within the health and social care system, such as:

Hierarchy in systems - Traditional sources of knowledge and power thrive and create imbalances between professions and stakeholders. Emergent ways of understanding what constitutes value can struggle to be heard in siloed, stigmatising or bureaucratic structures.
Complexity in systems - Multiple partners, often with conflicting pressures, are competing under top down and disconnected incentives. As a result, communication suffers; this inhibits collective energy, stifles innovative and diverse thinking, often leading to unintended consequences.
Inequalities in systems – This can include a lack of diversity in senior leadership positions, user-led or third sector groups lacking voice or funding, and marginalised communities being under-involved or under-represented.

On top of these interlinked and cyclical factors, the main areas of challenge for successfully embedding lived experience roles are listed below. Suggested solutions to them will linked into the final section on strategic planning and delivery.

Questioning the value: Lived experience is a contested area and not everyone understands or agrees with the value. The UK mainstream press have questioned the use of public funds to support lived experience roles, already obscure to the lay public, using an anti ‘woke’ narrative (for example, Daily Mail Online, 2022). Where lived experience is not understood by those in more established roles, it can be framed as a threat, not an opportunity. Lack of clarity on the benefit amongst clinical teams can cause confusion and defensiveness, while among system leads it can cause blocks to funding and development.

Lack of role clarity: Confusion about what should be expected of lived experience roles arises throughout the various fields of lived experience work. Hierarchical cultures sometimes mistrust any new roles, and when understanding of lived experience itself is low or blurred, this can be compounded. There is a significant body of research which highlights the impact of poorly defined lived experience roles. In particular, a lack of role clarity for peer workers has been found to lead to confusion in their role which affects confidence and perception of competence. This had ramifications for their own recovery and led to uncertainty in their responsibilities to people using services. A lack of clarity also led peer workers to feel the role was tokenistic, and to feel uncertain about where to seek support. It led to a lack of support and subsequent mental health struggles, which confirmed a stigmatising identity to those around them (Gaiser et al., 2021; Sun et al., 2022; Smit et al., 2022)

Emotional labour, stigma and toxicity: The impact of discrimination, stigma, and power imbalances on people with lived experience roles is well documented. Faulkner and Thompson (2021) describe multiple factors involved in the ‘emotional labour’ which characterises lived experience work, including negotiating identity and the emotional work of using and embodying lived experience. Waddingham (2021) identified the main challenges of lived experience leadership work as: unrealistic or impossible expectations, the fight for credibility, serving someone else’s agenda, not being valued, working in dangerous territories, the heavy personal toll and attacks from others. On top of this, staff in other roles also report stigma and discrimination around their mental health; testament to a wider lack of psychological safety noted for people working in mental health.

Difficulty demonstrating outcomes: Lived experience work is often caught in a dilemma around demonstrating impact and outcomes where it is only one part of a whole team or service approach. Not enough funding and support for the work can also be a barrier, as can working in a system under pressure and general understaffing. These challenges make it more difficult for lived experience roles to thrive and so less likely to bring about potential positive outcomes. Attribution of positive outcomes to the lived experience contribution is inherently difficult as it often adds to user experience through ‘soft’ factors such as engagement, accessibility, inclusion and relationships. In a climate increasingly tied to evidence-based outcomes, specific, often quantitative measures, we cannot provide a true picture of the power of the inclusion of lived experience to have an impact at multiple levels (Kaleveld et al, 2022).

Parity of remuneration and status: As lived experience roles emerge across organisations or sectors there can be a lack of clarity and parity of remuneration. Complexities arise when some lived experience practitioners are paid on a sessional basis and others are fully employed. While it is often the case that statutory organisations use different pay scales and frameworks than the third sector, for lived experience roles, there is often no consistency even between statutory providers. For example, a Peer Facilitator may be paid at band 3 by one NHS Trust, and band 5 by another. This can compound the issues of stigma, discrimination and confusion outlined above.

Lack of progression and job security: As lived experience roles represent a relatively new part of the health and social care workforce, funding for these roles is often not consistent, recurrent or strategic. Fixed term contracts and hourly paid opportunities make it more difficult for lived experience roles to be seen as an embedded part of the workforce, and do not provide security to the people that work within them. In addition, while there has been growing investment in entry level lived experience roles nationally, little attention has been paid to career structures, or routes to progression. This leaves people within lived experience roles with few opportunities to take up leadership roles which would enable them both to develop their skills, and to influence organisations at more strategic levels. The lack of career progression can lead to a high workforce turnover as people seek progression elsewhere, meaning valuable skillsets that lived experience workers develop through years of working within a particular field can be lost.

Grass roots activism vs. ‘inside agents’:

There is some debate within the lived experience movement about where lived experience roles are best positioned. Some believe that including lived experience within mental health and social care systems is the only way that these systems can be meaningfully changed. Others argue that it is only by remaining separate to these systems that the voice of lived experience can remain true and avoid being co-opted and assimilated into existing paradigms. These polarised views can lead to a disconnect between those in lived experience roles working within the system and those outside of the system, where both parties can see the other as part of the problem. This leads to a lack of dialogue between lived experience roles, with loss of diverse thinking, creativity and collective agency.

While complex, none of the challenges described above are insurmountable, and significant work has been done within some organisations and networks to pre-empt or overcome these challenges already. Within these broad challenges, some common solutions also emerge which could start to build more collective direction, momentum and purpose towards success.

What is clear, is that the more cohesion and clarity we can create around lived experience roles, the more successful they are likely to be. The best way of doing this is to put energy and focus into developing lived experience roles that are designed for success, and for their development to be tied into a wider strategy which can make visible the value of lived experience, as well as act as an organisational commitment to ongoing development.

A lived experience strategy for whole organisations and systems

We have seen that lived experience presence, literacy and expertise brings new value to organisations challenged with improving services in complex systems. However, many examples of challenges in this work tell us that achieving an organisational understanding of lived experience and its value is also a fundamental part of any strategy. Its inclusion and acceptance can have benefits beyond the original remit of the lived experience roles or projects, by changing the culture of teams and focusing staff on recovery-oriented practice and the experience of those who use services. This in turn could improve wellbeing and role satisfaction for other staff, and lead to greater diversity in decision making and improvements in service delivery. A lived experience strategy should therefore be part of or aligned with the core HR strategy for the organisation as well as linked to improvement programmes and service delivery plans.

As much as possible, a lived experience strategy should take an inclusive approach to the whole organisation or system. The strategy should address the value of lived experience to the whole culture and for all staff, whether they have their own lived experience, are specifically using it in their work, or benefiting from the inclusion of such perspectives in their organisation, through greater focus on effectiveness and experience for all. It is also about thinking forward to how the overall benefits will be evaluated and measured in future.

The following table offers some broad goals and suggested steps for developing a lived experience strategy. It is not mean to be exhaustive and recognises that this will be an iterative process. There are certainly many more steps for implementation possible, but we recognise these should be co-developed as each system and providers work locally with stakeholders, based on the communities served as well as the strengths and ambitions of the existing system. Ownership of the process and outcomes can then be held by the community for which this strategy serves.

Focus: Workforce Diversity and Lived Experience Presence

Strategic Goal:

Develop a diverse workforce that reflects the community served through inclusive and accessible recruitment and employment practices.

Suggested Steps for Implementation:

Promote applications from people with lived experience of all kinds for all roles.
Use a targeted approach aimed at under-represented communities in the existing workforce.
Use values-based approaches in interviews and person specifications, embracing the value of lived experience together with learned experience.
Use alternatives to traditional interview situations to understand people’s potential and allow them to learn about work settings.
Offer opportunities to develop experience and skills pre-recruitment through free courses, placements, or voluntary positions.
Use inclusive recruitment processes based on reasonable adjustments for disabilities and socio-economic barriers (e.g., education, digital literacy).

Focus: Lived Experience Literacy for Whole Organisations and Systems

Strategic Goal:

Raise awareness of lived experience value, benefits, and practice in all staff training and development.

Suggested Steps for Implementation:

Lived experience staff should provide awareness training about the value/benefits of their roles and perspectives at the induction of all staff, staff conferences, and team development days.
Aim for professional development to be co-produced and co-delivered with lived experience trainers wherever possible.
Fund and develop training capacity among people with lived experience through Recovery Colleges or with partners.
Create and promote case studies and impact stories of lived experience roles in action, as well as co-produced improvement projects and successes.
Monitor attitudes toward utilizing and valuing lived experience within services in regular staff surveys, responding to development needs in strategic reviews of this activity.

Focus: Lived Experience Role Development and Progression

Strategic Goal:

Develop clearly defined lived experience roles with visible value, identity, and routes for development.

Suggested Steps for Implementation:

Co-produce new roles with all stakeholders, including people who use services, and existing lived experience leads, considering how lived experience will be used, supported, and its impact.
Regularly review the scope, job satisfaction, and impact of lived experience roles, aiming to improve success and experience of those in these roles.
Link up roles across services in systems, growing a locally owned community of practice with shared understanding of impact.
Offer accessible routes into and through training for people with different needs and educational backgrounds.
Develop clear progression routes to lived experience roles that require more advanced levels of skill, autonomy, and responsibility.
Work with local apprenticeship leads and other professional leads to ensure lived experience roles and expertise are understood within traditional entry criteria to other roles.
Lived experience lead roles to have responsibility for strategic planning and review, working alongside system leads, including:
- Working with system partners to agree on standards for pay according to role complexity and shared understanding of progression routes.
- Working across system providers and lived experience networks to measure outcomes in ways that practice can be shared and developed together.

Focus: Lived Experience Leadership and Influence

Strategic Goal:

Develop lived experience networks and leadership to influence organizational governance and systems decision-making regarding funding, commissioning, service models, targets, and outcomes.

Suggested Steps for Implementation:

Connect structures for involvement and co-production with people who use services from the ground up through to the executive leadership.
Enable lived experience assets and successes (training, good practice, outcomes) to be shared and embedded across a system.
Identify groups, communities, or partners not included, and build understanding and inclusive approaches.
Include lived experience leadership and networks in commissioning and role expansion plans.
Allocate budgets for networking and development to lived experience staff groups (e.g., conferences, development days).
Provide support and funding for smaller user-led organizations outside of your organization to be part of networks.
Agree on a plan for co-produced governance and co-creation of wider strategy in the organization—connecting networks to systems leadership to be part of decision-making, learning, and outcomes measurement.

The suggestions above for a lived experience strategy are broad and aimed at building organisational and system capacity to improve and transform. This will be a collaborative and iterative process, and should not an isolated activity; always aiming to align lived experience with system transformation and organisational development, as a significant part of creating lasting change.

Conclusion

Lived experience has the potential to significantly improve health and social care services, enabling them to respond creatively to what communities need, and to deliver care and support that creates more meaningful outcomes. However, lived experience roles are being introduced at a time of huge complexity in these systems. While cultures are changing and becoming more accepting of lived experience, they are also becoming more risk-focused, less resourced and more burnt out. The inclusion of lived experience into such organisational cultures therefore requires careful thinking. While lived experience can benefit multiple agendas and bring about change at every level of an organisation, this is only the case if the roles are properly planned, resourced and supported.

The development of lived experience roles needs to be driven forward jointly by employing organisations and those with lived experience. Change cannot happen from just the outside, nor can it come completely from within the existing organisational frameworks. Networks and partnerships to share understanding of the value of lived expertise and to support its development are critical. The diversity of perspective inherent in the lived experience movement should not prevent it from taking a role in developing lived experience both within and outside of systems. It is the work of the collective of lived experience voices to co-create change, hope and meaning, drawing on well-developed skills to ‘use the difficulty’ and ‘roll with resistance’.

People with lived experience often have felt ‘done to’, othered and marginalised in their past when they have sought support. This experience can feel repeated when they try and work in systems to make improvements. It is easy to lose sight of the value and skills that lived experience can add, and as humans we all can draw our own lines in the sand and project our own ideas of ‘them and us’. We need collective solutions to improve human services together, not more fragmentation in this divided world.

The value of lived experience for whole organisations comes when the elements of presence, literacy and expertise come together, creating the potential for multi-level impact. Lived experience strengthens organisational capacity through a focus on user involvement, patient experience and co-production, all of which are strongly linked to other frameworks such as organisation development and systems thinking. However, none of this is possible without the structures and support for new values, new perspectives and new voices to be included. This should already be happening and supported as part of systems change and improvement. Where it is not happening, lived experience voices are often naming that gap, and others are increasingly joining them as allies or partners. Through dialogue, mutual understanding and collective solutions, it is possible for an organisation to build a ‘literacy of change’ culture. In health and social care systems, this can only be achieved through the significant contribution of lived experience.

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Imroc

26. The role of lived experience within health and social care systems

Introduction

Drivers for the Inclusion of lived experience perspectives

Driver 1: changes in attitudes and approaches to mental health and social challenges

Driver 2: demand and dissatisfaction

Driver 3: recognition that the user perspective is essential to improvement

Driver 4 need to transform health and social care systems

Deeper blocks to change

Evolution of a co-creation Board: A collective progress Chris Morton, Lived Experience Director, Tees Esk and Wear Valleys NHS Trust

Embracing Challenges and Opportunities

Gaining Influence and Formality

Achievements: Marking Milestones and Impact

Looking Ahead with Collective Determination

The value of lived experience to health and social care systems

Organisational agendas that can benefit from the inclusion of lived experience

Agenda 1 Experience as part of Quality

Agenda 2 Diversity

Agenda 3 Collective action, innovation and new value

Markers of success: lived experience presence, literacy and expertise

Designated roles for lived experience

Some common lived experience roles

Experts by Experience, Co-production or Participation Partners and Leads

The experience of an expert by experience lead - Raf Hamaizia

Peer Workers, Peer Support Specialists and Peer Mentors

Figure 3: extract from a person specification for an Advanced Practitioner lived experience role

Peer or Lived Experience Researchers

The experience of a peer researcher - Dr Sam Robertson

Peer Educators, Facilitators or Trainers

Recommendations for developing lived experience roles

A ‘patchwork’ journey in lived experience work - Mel Ball

Challenges for lived experience roles

A lived experience strategy for whole organisations and systems

Focus: Workforce Diversity and Lived Experience Presence

Strategic Goal:

Suggested Steps for Implementation:

Focus: Lived Experience Literacy for Whole Organisations and Systems

Strategic Goal:

Suggested Steps for Implementation:

Focus: Lived Experience Role Development and Progression

Strategic Goal:

Suggested Steps for Implementation:

Focus: Lived Experience Leadership and Influence

Strategic Goal:

Suggested Steps for Implementation:

Conclusion

References

Reflections on Peer Support: Visions of Opportunity for 2030

25. Supervision for Peer Workers