Centring Lived Experience: a strategic approach for leaders

Charities are increasingly waking up to the value of lived experience, recognising that it can increase their impact.

But our research found that without a strategic approach, centring lived experience will always risk being tokenistic. And that a strategic approach is only possible when spearheaded by senior leaders.

This guide helps senior leaders take a strategic approach. It contains step-by-step guidance on how to effectively incorporate insight from lived experience throughout your organisation.

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Introduction
What does centring lived experience meaningfully look like?

Step 1: Prepare and explore
Step 2: Define the ‘why’ and the ‘what’
Step 3: Develop your approach
Step 4: Prepare for meaningful and safe delivery

Image by Kane Reinholdtsen on Unsplash

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Acknowledgements

This guide would not be possible without the collaboration of our partners.

We are grateful to the City Bridge Foundation, who are committed to building a strong civil society and strengthening marginalised voices, and generously contributed funding towards this work.

NPC has been lucky to be guided by a fantastic Steering Group with lived and learned experience of centring lived experience, who have all hugely shaped this work. Thank you to:

We are grateful to our Research Partners for sharing their expertise and time and being open and honest contributors: Cancer Research UK, Criminal Justice Alliance, Refugee Action, Rethink Mental Illness, Revolving Doors, Sister System, St Basil’s, Young Manchester, Young Women’s Trust, and Your Voice Counts.

This guide was developed collaboratively with input from our Research Partners and Steering Group members, and therefore it has been agreed that this guide will be licensed under Creative Commons to give our partners and others interested in this work the right to share and use its content. As such, this work is licensed under Creative Commons – CC BY 4.0.

We hope that this collaborative approach allows the sector to benefit from the different strengths and experiences of each of our partners, and serve our collective goal of improving how lived experience is valued and shapes the work of the sector.

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A strategic approach to centring lived experience

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Introduction

The charity sector is finally waking up to the value of lived experience. Thanks to a movement led by inspiring leaders with lived experience and advocates over many years, charity leaders are increasingly focused on making sure lived experience is influencing what their charity does and how it does it. Charities that are ignoring lived experience are going to be left behind.

Charities that draw on lived experience can have a stronger identity, better engage their audiences, and deliver more impact. People engaging with or working for charities who have lived experience of the challenges the charity is tackling often report new skills, more confidence, and a greater sense of belonging.

Valuing and emphasising lived experience can challenge perceptions in our society about who can and should lead social change organisations in a way that has implications far beyond the third sector. Centring lived experience has the potential to greatly increase the impact of our sector.

There is great variation in how this is being done across the sector. Some charities are leading the way. Some are yet to think about getting started. It can be hard to centre lived experience in a way that feels meaningful, and not tokenistic. It can be difficult for leaders to prioritise it over competing agendas. And it can be challenging to put enough resources into it.

These challenges mean that charities often try to bring in lived experience through one-off projects or limit it to a particular area of the organisation. But NPC believes that to capture the value of lived experience meaningfully, charities need to centre lived experience in a strategic way across the organisation.

Without a strategic approach, charities:

  • cannot make the most of lived experience
  • risk being tokenistic which can lead to more harm than good
  • fail to move beyond individual involvement activities or one-off approaches
  • struggle to understand what impact lived experience has had on outcomes.

Centring lived experience meaningfully like this is not a one-off exercise or something you can ‘tick off’ once you have completed. It’s an ongoing change that often requires a significant cultural shift for a charity. It takes time, dedication and perseverance. But charity leaders should be ambitious about drawing on the value of lived experience, even if the journey is a long one.

This guide is intended to support senior leaders of charities—whether you are a trustee, a CEO or in another role on the leadership team—to lead your organisation through a journey to centre lived experience in a way that is strategic, meaningful and integrated across your charity, so that it has a significant impact on your work and those you support. It is so important that leaders listen and learn throughout this process and when driving change.

We recognise that there are structural and sector level barriers that make this work more challenging, and this guide focuses on what is possible for you to do within your organisation.

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About this guide

This guide is based on findings from a research project led by NPC in partnership with ten Research Partners: small, medium and large charities tackling different challenges. All of them are on a journey to meaningfully centre lived experience.

Through interviews and focus groups with people in different roles in these charities, we gathered information on how these charities centred lived experience, what they felt made this meaningful, and how they overcame challenges.

Our Steering Group of five leaders with lived and learned expertise of driving forwards good practice in centring lived experience helped us shape the guidance.

There is a wealth of excellent published guidance already available in this space. We have tried to build on this and signpost to existing resources throughout. We have also prepared short resources that you might find helpful, linked throughout the guide.

By making this guide applicable to senior leaders across the charity sector, it is not tailored to the specific needs of a particular sector, group of people or type or size of charity. Therefore, as a leader, you will need to apply this guide to your particular context and those your charity supports.

The guide has four steps. You can use one or two steps that feel relevant to your organisation right now, or follow every step in order. After each step, we spotlight how you might apply each step to centring lived experience on your Board. We chose this example because of its importance, and because many consider it a good starting point.

First, the guide explores what centring lived experience meaningfully looks like. Here we share our findings and observations from across all our Research Partners about what makes centring lived experience meaningful and impactful.

Then, practical guidance is broken down into the following four steps charities can take to start on this journey.

All steps should be driven by senior leaders – typically Trustees, Chief Executives and/or Directors – and involve staff, experts by experience, and in some cases, external stakeholders.

  1. Step 1: Explore options and prepare your organisation to lay the foundations for success.
  2. Step 2: Define the ‘Why’ and the ‘What’ to provide a cornerstone for your approach.
  3. Step 3: Develop your approach by designing structures, processes and mechanisms that will help you achieve your goals.
  4. Step 4: Consider how you will ensure delivery is safe, meaningful, and inclusive.

Steps 1 to 2 are finite processes that you should start with. You can scale these up or down depending on the size of your organisation and your timeline.

Steps 3 and 4 are likely to be an ongoing, iterative process that happens over a longer timeline.

Throughout, it will be important that people with lived experience are feeding into and shaping the outcomes of each step.

As you embark on this journey, we encourage leaders to share what you learn with NPC and the wider sector, so that we can work together to shine a light on and advance good practice across the third sector and beyond.

Language and terms used in this guide

Terms used to describe people with lived experience, or work to centre lived experience, are often highly contested. Terms and language that are appropriate in some settings are not in others. Terms and language that are welcome by some, are regarded as offensive by others.

This guide has been produced to be used by any senior leader in the charity sector. Therefore, the language and terms used cannot be tailored to a particular sub-sector, setting or group of people.

We would recommend that any leader understand what language and terms are appropriate in their context by speaking to people with lived experience and colleagues in their sector.

In this guide, we use the following terms and definitions:

  • Lived experience: The experience(s) of people on whom a social issue, or combination of issues, has had a direct impact.
  • Experts by experience: A person who has first-hand experience of the problem a charity is seeking to address through its work.
  • Learned or professional experience: Expertise and knowledge in an area gained through study or paid work.
  • Involvement: Any initiative where an expert by experience has influenced decision-making, or the design or delivery of a charity intervention. Some find this word limiting as places the power with an organisation, but we have used it because it is widely used and recognised.
  • Service user: A person who has used or benefited from a charity’s intervention or offer.
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What does centring lived experience meaningfully look like?

Lived experience will be having a meaningful impact on your organisation when it changes what you do, how you do it, or the impact you have—and when taking part benefits the experts by experience involved.

For this to be a significant change, centring lived experience in a strategic and systemic way across your organisation is key.

But what are the traits of a charity doing this well? From our conversations with Research Partners, we identified twelve common themes that felt like ingredients for charities centring lived experience meaningfully.

Related to Step 1

1. Senior leaders are committed to meaningfully centring lived experience

Lived experience is prioritised by organisational leaders, who are excited and enthusiastic about centring lived experience within the organisation. Lived experience is recognised and celebrated regularly by leaders.

2. The charity is willing to adapt and do things differently to be accessible

It alters existing processes and structures, such as the time and format of a meeting or how skills required are shared between a team. It is open to trying different ways to centre lived experience depending on the needs of certain individuals.

Related to Step 2

3. Centring lived experience has a clear shared purpose

At a strategic level and operational level, there is clarity around why lived experience is being centred (and what the charity hopes will be different as a result). Staff and experts by experience are engaged and working towards the same goal.

4. Lived experience is an important feature of the charity’s strategy

Its importance is emphasised, staff have permission to spend time and resources on it, and people are held to account for doing it well. It contributes towards a mindset of being committed to centring lived experience, and ensures lived experience is visible, present and on peoples’ minds

5. The charity is ambitious but realistic about what it can achieve

Limited resources are prioritised effectively. Where resources are limited, less is done well rather than over commitments made.

Related to Step 3

6. Lived experience influences strategic and operational decisions

Such as service design, peer research and Board level strategic decisions.

7. Lived experience is shared early

Experts by experience are included early on in decision making when there is still room for their input to make a difference to the outcome to strategic and operational decisions. ¬

8. The importance of trust and relationship building is recognised

Building relationships so that everyone can engage fully and feel confident to provide input and challenge is a priority, and time and resources are allocated to this. There are clear and transparent mechanisms for closing the feedback loop on decision-making, which builds trust.

9. There is a culture of openness and flexibility

There is an organisational mindset of being open to change and adapting, which makes change and flexibility the norm. Approaches to centring lived experience are constantly evolving, with a high degree of flexibility and fluidity.

Related to Step 4

10. The charity is honest and transparent about the role of lived experience

Clarity over the level of influence an expert by experience’s input will have on a decision or an output builds trust and avoids disappointment and frustration.

11. The charity supports everyone to engage

Including staff and experts by experience—for example by paying travel expenses, putting in time to prepare for a meeting together, training, or providing a safe space.

12. Continuous learning and improvement are high on the agenda

There are processes to capture learning, and a culture of continuous improvement which increases the impact of centring lived experience. An organisational mindset of being happy to engage with critiques, learning from mistakes, and constantly thinking about how to improve supports this.

Step 1: Prepare and explore

Meaningfully centring lived experience could be a big change for your charity. Step 1 is about laying the foundations for this work. This will help you define an ambitious but realistic approach that is tailored to your charity, and doesn’t have you re-inventing the wheel. Make this step proportionate to your charity: This could be an in-depth rigorous exercise or a series of short conversations.

 

The role of senior leaders in step 1

  • Build buy-in and excitement about meaningfully centring lived experience across the organisation with fellow senior leaders and other colleagues.
  • ‘Walk-the-talk’ by regularly sharing commitment to doing this well, through words and actions. Involve experts by experience in the process.
  • Reflect honestly on your organisation and its current capabilities and resources. Be curious about the approaches of your sector peers, so that you have good information on which to base the strategic decisions you will need to make in step 2.
  • Listen and learn.

1.1 Build buy-in to doing this meaningfully

Your fellow senior leaders and other colleagues must be committed to centring lived experience, and open to adapting and changing how the charity does things to do so.

You might already be a champion of centring lived experience, and there may be others in your organisation that are supportive. However, it’s not always easy to galvanise allies and influence those in the organisation who are more used to existing structures of decision making, or who see the work of centring lived experience as outside of the remit of their role.

With fellow senior leaders

It is important that this step happens first. While it can be tempting to work up a suggested plan before taking it to the board or leadership team, our research showed that it is vital to get high level buy-in to the idea of centring lived experience meaningfully before a plan is developed.

Create space for discussions with fellow senior leaders that will build buy-in. The following tips and tools might help.

  • Use a short Board paper that summarises the benefits and risks to your charity and allows for discussion. Ground this in the specifics of your charity. For example, if you provide training to young people, showcase how centring lived experience will improve outcomes for young people and create a group of young people who can act as role models for others.
  • Create space to understand your colleagues’ preconceptions about centring lived experience. This asks leaders to brainstorm opportunities and barriers they see in shifting to centring lived experience, with a specific reference to the work that they lead at the organisation. For example, colleagues might not feel they have capacity to take something else on or be nervous about sharing decision-making power. Identifying these concerns can help you address them and guide how you design your approach.
  • Create opportunities for senior leaders to meet with experts by experience, for example during an Away Day or Board Meeting. This can help build buy-in by demonstrating the value of lived experience and highlighting gaps in the knowledge and expertise of those with learned or professional experience.
  • With trustees, it can be helpful to frame this in relation to the Equality, Diversity and Inclusion Principle (6.4.3) of the Charity Governance Code, which specifically mentions lived experience.

Engaging wider colleagues

You will also need to begin to sow the seeds of this work among wider staff—letting them know it is happening, that is important, and highlighting when they may be given opportunities to input into the development or implementation of a plan to centre lived experience. While the strategy or plan should be led by the board and Executive Leadership Team (ELT), you may choose to have a wider process of input from staff in the development phase to ensure widespread buy-in when it comes to implementation.

Talk about this when talking to your teams, and in more formal communications. Cover why it matters, and your upcoming plans. It is important staff feel supported with any training or coaching that may be needed as this work is embedded across the organisation. This is especially important when recruiting new people.

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Case Study: Barnardo’s

Barnardo’s is committed to ensuring voice and influence is at the heart of what it does as a charity and that starts right at the very top. Young people are involved in the recruitment process for senior leaders in the charity (including our CEO), setting the tone from the outset that young people’s voices play a key role in decision making at Barnardo’s.

Young people and trustees have the opportunity to spend time together at the very start of (and throughout) trustees’ tenure to explore the direction and development of the charity together, ensuring important conversations start with the “experts” in the room.

A big part of getting organisational wide buy-in is by highlighting to staff and young people across the organisation the great opportunities young people are getting. This includes using internal (and external) comms to put a spotlight on the work and evidencing back how the charity is walking the talk.

1.2 Reflect on your current resources and capabilities

Centring lived experience is a process of cultural change, which requires significant investment of time, energy and skills: this should not be underestimated. Before you dive in, it’s a good idea to reflect honestly on how prepared and equipped your charity is for this change. This will help you design a realistic approach, build on your strengths, and resolve challenges that might hold you up later down the line.

You will need to draw on insight from people across your organisation, but you should drive this process: show that you are willing to listen and open to challenge. And be honest about your fears, so colleagues can do the same. Be honest about what might need to change in your organisation, and what is feasible for you to commit to.

We suggest exploring the following questions, with input from staff and experts by experience. Senior leaders should then summarise the key learnings so they can be  helpful when making strategic decisions in Step 2.

Questions to ask: The wider context for your organisation

  • What else is going on for our organisation that might impact our ability to meaningfully centre lived experience?
  • Is there sufficient stability and headspace to pursue this now? If not, what would we need to do to create this?

What might help your answer?

  • The risk register
  • Board papers
  • Light touch charity analysis—using What Makes a Good Charity
  • Conversations with colleagues

Questions to ask: Your organisation’s culture and values

  • What is our culture as an organisation?
  • Where might our culture enable or impede our journey to centre lived experience?
  • What are our organisational values? Will they support us or hold us back on this journey?

What might help your answer?

Questions to ask: How lived experience currently influences your organisation

  • What have we done in the past in relation to involvement or drawing on lived experience, and what have we learnt?
  • Where does lived experience currently influence what we do? Through who, and in what forums?
  • How impactful and meaningful is this now or has it been in the past? Why?
  • What skills, experience and capacity do we currently have to centre lived experience?

What might help your answer?

What if your internal reflection leaves you feeling overwhelmed by barriers?

It could be that your charity is undergoing a period of significant change, you are unsecure in your funding, or have a significant cultural barrier that will impede your efforts.

In these cases, we recommend still working through Steps 1 and 2 to lay out your aspirations, and then working through Step 3 but focusing only on one or two small changes to start with.

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1.3 Understand specific strengths and needs of people

Your colleagues and those with experience in the challenges your charity is tackling may have particular strengths and needs that will affect how they engage with your approach to centring lived experience. For example, how much free time they have, what times of day they are available, experience and confidence with decision-making processes, or differences in language or culture.

Identify these up front, as this will be important to consider when designing your approach in Step 3. You may feel you or your colleagues have a strong understanding of this through your work already. If so, think about how that might apply to centring lived experience. If not, you need to find out by asking and listening to the people in question.

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1.4 Learn from others

Gathering ideas, learning from other organisations, and making the most of existing opportunities can stop you reinventing the wheel and help you base your approach on best practice.

As well as talking to your peers, you might also find existing published research helpful. For example, The National Survivor User Network’s (NSUN) Lived Experience Leadership: Mapping the Lived Experience Landscape in Mental Health (2021) covers some of the challenges inherent in this work, as well as what can be done to support and nurture lived experience leadership in the mental health sector.

We suggest exploring the following questions, with input from staff and experts by experience. Senior leaders should then summarise the key learnings so they can be a helpful when making strategic decisions in Step 2.

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Question to ask What might help you answer?
What unique needs do experts by experience have in our sector that we will need to consider in our strategy design? How are these needs changing? Desk research analysing needs data. Speaking to experts by experience.
What are the established power dynamics within our sector? Speaking to experts by experience.
Who else is centring lived experience in our sector, and what have they learnt? Consultation with peers via interviews, surveys or a roundtable.
What opportunities for collaboration are there? Consultation with peers via interviews, surveys or a roundtable.

Applying Step 1 to your charity’s governance

The Board’s involvement is crucial in step 1 to ensure there is enough buy-in and energy to drive this change in the charity. Making significant changes to ensure that lived experience is central to your governance process will also signal how important this is to your wider organisation and create buy-in. This will help you ensure that the voices of those with lived experience are reflected in steps 2, 3 and 4.

Centring lived experience on your Board is not just about recruiting trustees with lived experience or setting up an advisory board. It’s about changing the culture and processes on your Board, so that they are inclusive, and that lived experience is genuinely influencing decisions. It could mean not only changes in how you recruit trustees, but also how you run your Board Meetings, how you make decisions, how trustees interact with one another, and the support and resources required around governance.

  • Build buy-in and engagement: Consider who you need to engage to make changes to your governance. This will include trustees, but could also be other senior leaders, members of staff, and possibly other advisory boards or panels that you have. Use the guidance, tips and tools in Step 1 to hold discussions with these stakeholders. Key to these conversations will be that centring lived experience is not simply adding some trustees with lived experience to your Board. It’s about changing the way you govern your organisation so that lived experience plays a more central role. Trustees and other leaders need to be prepared to change how they do things.
  • Reflect on your resources and capabilities: Use this as an opportunity to consider what is working and not working about your governance processes, and how this can be improved. For example, are Board papers too long? Do you have enough challenge from trustees? Is discussion too focused on one or two topics? Also, consider the culture of your Board and whether this would be supportive or a barrier to centring lived experience: what are the norms and ways of working? Are they inclusive?
  • Consider the strengths and needs of those with lived experience: For example, what skills might they have that you want to make the most of? How can you best do that? Are they more likely to be available at certain times of day? Have online access or be able to meet in person? Speak a different language or be used to a different culture? Might they have a different level of experience and confidence engaging with group discussion or reading Board papers? Might they need some support to contribute?
  • Learn from others: Gather ideas from how other charities centre lived experience on their Boards and reflect on what might work for your charity. There is no right or wrong answer. It might be that you try a few different ways of doing this before you feel you’ve got it right.
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Step 2: Define the ‘why’ and the ‘what’

In Step 2, senior leaders should draw on the information and insight gathered in Step 1 and work with others to make decisions about why you want to centre lived experience, and what this will look like for your charity.

Role of senior leaders in Step 2

  • Shaping strategic decisions about centring lived experience for your organisation.
  • Ensuring that your approach to centring lived experience aligns with the organisation’s overall strategy.

2.1 Articulate your clear shared purpose

Be clear about why you want to centre lived experience, and what you want to see change as a result. Be clear about how this relates to your charitable mission and your charity’s values. You should also consider what ‘good’ looks like for your charity in particular: This will depend on your organisation’s history, size, context and who you exist to support.

These questions are fundamental and senior leaders should work with colleagues and experts by experience to answer them.

“It was the most awful, meaningful, emotional, and moving discussion we had. What came out of it was this incredibly powerful statement that those with lived experience had led and we listened. And now we have a much more emotionally engaging strategy as a result about how people feel and how they’ve been treated.” – Penny Lawrence, Chair of Refugee Action

These questions will be easier to answer if you have a clear strategy or set of values. For example, if you have a goal of tackling inequities, you will probably want to create a plan to centre lived experience in a way that amplifies the voice of those worst affected by inequity.

Questions to ask

  • Why are we doing this? How does it link to our charitable mission?
  • What does good look like for our organisation in relation to centring lived experience? What do we want to aim for?
  • What will be different as a result of doing this?
  • What are the fundamental values and/or principles we will adhere to in this work?

Following discussion, you should summarise the decisions made so you can refer back to them in Step 3.

You may choose to share this summary publicly, to allow experts by experience to hold you accountable going forwards and encourage your peers to adopt a similar approach. Examples of this are Turn2Us’ framework for involvement, which includes a statement of guiding values and principles and a theory of change for its involvement activity, and Homeless Link’s principles underpinning its co-production work.

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2.2 Decide how you will capture impact and learning

Our Research Partners emphasised the importance of continuous learning and improvement when centring lived experience. It’s unlikely that you’ll get everything about your approach right the first time. So, you need to decide how you will understand how it’s going. And how you will capture and respond to feedback and learning to improve.

Being clear on what you want to see change as a result of centring lived experience will help you decide what and how to monitor and evaluate. You could start by using what you want to see to define a set of learning questions. Examples of what these outcomes might be and guidance for measuring the impact of involvement are explored in NPC’s guide Make it Count (2018).

There is also value to sharing learning with peers. While acknowledging mistakes and challenges can be difficult to do, how to centre lived experience meaningfully is a question where practical insight will be valuable to many. An example is learning and insights from the Challenge and Change Fund.

At this stage, it might be useful to collect some baseline data from experts by experience and staff currently engaged in any involvement work you do. This will make it easier to assess the impact of any change you make to your approach.

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Case Study: Centring lived experience in impact measurement at Rethink Mental Illness

Rethink Mental Illness works to improve the lives of people severely affected by mental illness through their networks of local groups and services, expert information and successful campaigning.

The charity places people with lived experience of mental illness and carers at the heart of all they do. With co-production and involvement being one of the underpinning principles driving the implementation of their Corporate Strategy, ‘Building Communities that Care’.

The strategy is impact driven, focusing on the long term impact of achieving the maximum quality of life for everyone severely affected by mental illness.

At the centre of their impact framework are a series of ‘I statements’, that define what good quality of life looks like to individuals affected by mental illness, as defined by experts by experience. They will measure their success by what they achieve with and for people affected by mental illness.

In the context of involvement this can be considered in relation to: the individual outcomes for experts by experience through being involved; the impact involvement has on the services they provide—such as whether services are better, or tenders are more successful; and the wider social impacts, specifically how the voices of experts by experience are influencing policy and community mental health transformation.

2.3 Agree on a timeline

Be realistic about what your organisation can do and when. Do not be afraid of being ambitious in the long term, but it is OK to take small steps. With a clear approach, you will be able to show how each small step leads to the implementation of an ambitious longer-term plan. It is worth committing to this process over the long term, iterating and evolving your approach as you progress.

Managing the risk of not doing this well should be an important consideration when planning how to implement your new plan for centring lived experience. There may be a limit to what you can do–for example, resources may be limited as there are many other factors at play.

We think this should not discourage you from taking some important first steps. Where possible, you should prioritise what you want lived experience to influence and do it well–quality over quantity.

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Involving experts by experience in step 2 and 3

You will want to include experts by experience in the decisions you make in Step 2. Remember that how you do this doesn’t then have to be the same as your overall organisation approach.

For example, you might use a panel of experts by experience to work alongside to answer the questions in Step 2, but this does not have to commit you to a co-design approach or a panel structure going forwards.

Examples of how you might make sure lived experience is shaping decisions in Step 2 are:

Insight gathered in Step 1 and relevant information on the charity’s mission, strategy and values are presented to experts by experience, who then make decisions on the key questions in Step 2, with support from your staff where required and appropriate.

Experts by experience, senior leaders, and staff have discussions and make decisions jointly.

Some decisions are made by senior leaders and then shared with a group of experts by experience who are asked for their thoughts and feedback. Changes are made based on this feedback before the decisions are finalised.

Applying Step 2 to your charity’s governance

  • Articulate a clear shared purpose: Discuss with your Board what they would like to be different about governance by centring lived experience. Draw on the discussions you had in Step 1 about what is and isn’t working, and the strengths of those with lived experience. Define some clear objectives for centring lived experience on your Board that will enable you to monitor progress. Make sure these link to the charity’s mission and strategy.
  • Define what you want to achieve: Discuss and agree with your Board what good will look like. How should lived experience be influencing decision-making? Are there particular principles or values that your approach should reflect?
    • It is also worth considering how you will make sure your Board continues to centre lived experience once the current trustees have moved on. It will be important to build it into processes so that it’s not reliant on certain individuals. You might want to consider updating your Memorandum and Articles of Association to reflect your requirement for the Board to centre lived experience.
  • Set up an approach to capturing learning: Consider and agree how you’ll know if you’ve achieved what you set out to? How often will you review this? How will you capture feedback from trustees and others?
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Step 3: Develop your approach

Once you are clear on what you want to achieve and why, step 3 is working out how to get there. This is the longest step, and there are likely to be several iterations and revisions to your approach as you test and learn. You will want to carefully consider what to do when—it is OK to have an ambitious goal but take small steps towards progressing it.

There is no ‘right’ approach, and what is right for your organisation and the people it supports might take some time to work out. It will also change over time. You will want to regularly sense- check whether your approach is working.

This guidance suggests the different elements of your approach you will need to consider, and the questions you’ll need to ask yourselves.

Role of senior leaders in Step 3

Depending on the size of your charity, it could be that your role is to do the things suggested in Step 3, or support others to do them. Either way, the role of senior leaders in this step is to:

  • Support and encourage those working on Step 3, allocating the time and resource they need.
  • Be clear about how decisions on the approach will be made and by who. Set clear lines of accountability and responsibility for each activity and decision.
  • Ensure that you can match decisions made in Step 3 with sufficient resources. If you can’t, scale it back so it is more realistic.
  • Listen to feedback from colleagues about what is working and not working, either in the design or delivery of your approach, and commit to responding to it.
  • Set clear expectations around the timeline to develop and implement the approach.

3.1 What do we want lived experience to influence?

Start by looking back to Steps 1 and 2 to remind yourself what you wanted to achieve and why. Then ask yourself what kinds of decisions or what delivery will need to be influenced by lived experience to achieve this.

For example: Governance? Key strategic decisions? Service design? Research? Delivery? Recruitment of staff or trustees?

Remember: Charities that are doing this well are making sure lived experience is influencing strategic and governance decisions, as well as operational ones.

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3.2 What type of involvement is right?

How lived experience influences what you do will depend on the decision or what you are delivering. There is a spectrum of approaches you can take, and the most appropriate and useful format will depend on the context. The influence of lived experience is lower on the left-hand side of this spectrum, and on the right, it is higher.

On the left, a charity might ask for input from people with lived experience with no commitment to use this in decision-making to a certain level. But it will impact what you do in some way. For example, research on what people with lived experience think about something might influence how you design a programme.

On the right, people with lived experience are leading on decision-making and/or delivery with support from a charity.

And there is a full range between. It is not always that  those on the right-hand side are better, but if you are only using the approaches on the left hand-side there is a limit to how much lived experience is influencing your organisation.

There are other trade-offs: The number of people you can include, and therefore the diversity of experiences, is high towards the left-hand side, but decreases as you move towards the right. However, the depth of insight increases as you move towards the right-hand side.

For the approaches towards the right-hand side of the spectrum to work, there will need to be significant trust and a strong relationship between the different parties involved. This is more time and resource intensive.

You will take different approaches in different areas and at different times. It is also common for the same involvement activity to flow between the different approaches from time to time. What is important, is being clear on which approach you are using, when, and why.

To help you decide, consider:

  • How does the type of involvement we choose align with our strategy or the principles behind our approach to centre lived experience?
  • What level of influence does lived experience need to have?
  • What breadth or depth of insight is required?
  • What existing resources or opportunities could be used?
  • What resources or skills do we have available?

Examples

The following are some examples of approaches that sit on different parts of this spectrum:

Example of research and consultation: Cancer Research UK’s Involvement Network

Cancer Research UK runs an Involvement Network which is made up of over 17,000 people affected by cancer. Within the Network, there are four patient panels who help to shape and influence the work of CRUK by sharing their insight and lived experiences. Some of the panels come together for regular online meetings and others provide their insight via surveys and e-consultations. They include a research and strategy panel, a policy and communications panel, and a group for children and young people.

The fourth patient panel asks patients for quick, online responses to questions within 48 hours. There is a rolling membership for consultation panels which allows new voices and perspectives to join every 2 years. CRUK also often draws on this Network to recruit people to focus groups and other involvement opportunities as they arise such as one off surveys, patient reps or telephone interviews. As of September 2023, the Patient Involvement team set up a new Involvement in Inclusion Steering Group, designed to help influence and direct the work the team does around equality, diversity and inclusion.

CRUK’s Treatment Record Booklet came about because of an idea from one of the patient panels. “It’s been one of the most successful products CRUK has produced … It was a gap in the market that people with cancer acknowledged, told us about, worked with us to create, and tested it.”

Example of collaboration and co-design: St Basil’s Youth Advisory Board

St Basil’s Youth Advisory Board includes young people aged 16-25 and offers young people an opportunity to shape St Basil’s services and contribute to creating change within the organisation. Members meet at least once a month, and set the agenda for meetings, which includes a range of topics such as: reflecting on and recommending changes to St Basil’s services based on lived experience, reviewing what is working well and what can be improved. The Youth Advisory Board is also responsible for making sure young people’s voices are heard at project level.

The board helped to co-design St. Basil’s Youth Standards which involved 140 discussions with young people to determine the key principles and values that all projects should meet.

Example of co-production: Sister System peer led self-development

Sister System supports care-affected girls to make sure they have the same opportunities everyone else has. The charity’s peer led self-development workshops create a network of sisters who support each other throughout key life transitions. Its ‘each one teach one’ approach means that the ‘sisters’ are acknowledged as the experts.

A ‘big’ sister often co-delivers alongside one of the teaching team. Once graduated they are given a range of opportunities to share and cascade their knowledge and skills as Big sisters, Peer mentors, Ambassadors, co-facilitators as well as to continue to shape the organisation from governance and leadership to operations and delivery.

Example of user leadership: No Recourse to Public Funds Action Group

The NRPF Action Group is a group of migrants fighting for equality, justice and fairness for all and to tackle inequality created by the No Recourse to Public Funds rule. This group is made up of experts by experience, with strategic aims to create public campaigns on social media, meet with politicians and speak out in the press. They are supported by refugee and migrant charity Praxis.

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3.3 Who will make this happen?

Clear lines of accountability and responsibility are key.

A sense of shared responsibility and collective ownership can help when centring lived experience. At the same time, a dedicated individual or team who is responsible for centring lived experience can help to set policies and processes to drive the work forward, keep it high on the charity’s agenda, and develop and share expertise across the organisation.

Experts by experience may also appreciate the clarity this can bring on who their point of contact is, where to go for support, and who will handle an expense claim. It will also signal to the wider organisation that embedding lived experience is important and valued.

If this role has significant status and connection to senior leaders, it is more likely to be effective. For example, if these roles directly report to the CEO or are within the senior leadership team, it signals the importance of this work to the wider organisation.

However, whilst a dedicated individual or team is beneficial, you should not be over-reliant on them. For a sustainable approach, responsibility should be shared across the organisation, with a dedicated individual or team providing oversight.

This can be done through considering how each role should be supporting the organisation to centre lived experience, and embedding that within the role through role descriptions and training. It’s important that responsibility and accountability are built into roles, rather than with individuals, so that when someone moves on from the organisation they don’t take that responsibility and knowledge with them.

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3.4 What skills will we need to develop or acquire?

For this work to be meaningful, senior leaders, trustees, staff, and experts by experience may need to acquire or develop new skills or expertise. Over-reliance on a few individuals who have the skills and confidence to lead this work is unsustainable and is often vulnerable to disruptions due to staff turnover or illness. It’s important to think about how to upskill and build the confidence of colleagues across different teams to meaningfully embed lived experience.

The type of skills will differ depending on the context. Some examples of skills that might be relevant are:

  • active listening to enable people to really understand and hear what people with diverse perspectives are communicating.
  • trauma informed practice, to prevent further harm or re-traumatisation.
  • strengths-based practice, to recognise and value the unique capacity, skills and perspectives of others.
  • skills or knowledge relevant to specific communities, for example young people or people with learning disabilities.

Upskilling experts by experience might also support them to meaningfully participate in certain decision-making or delivery of activities—for example, workshop facilitation or using social media. Make sure the offer of training is led by the needs and interests of experts by experience. Consider how training might support progression pathways for experts by experience to different roles in your organisation.

Other helpful resources include Clore Social Leadership and the Knowledge Equity Initiative’s Lived Experience Leadership report and NSUN’s map of the lived experience leadership field to understand the challenges around experts by experience progressing within an organisation.

If you’re recruiting new staff to lead or deliver this work, this toolkit from Anawim collates practical guidance on how you might recruit and support involvement staff.

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Case Study: Criminal Justice Alliance’s Elevate Programme

In April 2022, The Criminal Justice Alliance launched ELEVATE CJS, an innovative leadership programme run by, and for, people with lived experience of the criminal justice system the Elevate programme.

ELEVATE CJS has been co-produced with leaders with lived experience over the course of two years. Through personal and professional development training, the programme aims to help emerging lived experience leaders progress into rewarding careers where they can influence change in the criminal justice system or other social justice areas.

As a pilot, ELEVATE CJS will be conducted over two 12-month programmes in London. Participants attend online and in-person workshops, weekend residentials; undertake action research projects, senior level work placements, shadow board opportunities; and have access to regular coaching and clinical supervision.

Case Study: Upskilling young women to co-deliver

Young Women’s Trust (YWT) have an Advisory Panel made up of 23 young women with lived experience of unemployment, low pay, and other relevant issues.

The young women in this group inform YWT’s work through sharing their ideas and experiences and taking part in meetings, focus groups, events, and workshops. They also write blogs, speak to the media, and meet decision-makers and influencers.

Because of the fixed term, there is always a mix of new and more experienced members of the group, and the more experienced members are then able to deliver training and facilitate groups.

This peer-to-peer experience helps build a sense of community and is empowering for both new and experienced members.

Young women conduct peer-research to bring greater depth to YWT’s research work. YWT supports young women to create interview guides and train them in basic research skills to conduct interviews with other young women effectively and ethically.

3.5 How will you resource and fund this work?

It is important to allocate sufficient funding and resource to this work. A common mistake is to underestimate the amount of time and resource required. If you are short on time and resource, start with a smaller, but well-resourced step, rather than taking on too much.

“Everything takes longer than we think it will. But it’s worth taking the time, we get a better result. We offer work experience and feel a massive responsibility to make that a good experience for people. We would rather get it right and do it slowly.” Your Voice Counts

The costs associated with centring lived experience will be different in every context. The following are common costs to consider when resourcing and budgeting:

  • Time spent building relationships and trust: Without this, experts by experience will be less able to fully engage and contribute meaningfully. Adequate budget and effective planning are needed to foster connections. Consider the total amount of time required, but also the length of the time over which engagement and decision-making must happen.
  • Additional time needed to make decisions: Genuinely including another input into decision making takes longer. Flexibility and being open to change might require further conversations or to re-consider something.
  • Time spent on activities: The time and cost to run a co-design workshop or run a consultation, for example. Consider the time of those facilitating and participating.
  • Time and resources needed to support engagement: Time to prepare and de-brief from activities, meetings or decision-making forums ensures that everyone can engage fully. You might need to factor in training or additional resources to support a person to engage.
  • Other costs: This could include the costs of hiring a space for people to get together and expenses like travel or childcare.

Payment and recognition for experts by experience

Make sure experts by experience are never worse off or ‘out of pocket’ due to their involvement. This might be about covering travel expenses or providing an internet connection.

It is also important that experts by experience’s time and expertise is valued and recognised. How this is done will be different for everyone—ask those you are working with and respond.

Make sure you understand any constraints or implications of payment or reward for those you are working with. For example, payment can impact benefit entitlements. Mind’s Influence and participation toolkit contains more guidance on Valuing People.

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Applying Step 3 to your charity’s governance

Step 3 is about drawing on the information you’ve gathered in Step 1, and the decisions you made in Step 2, to decide how centring lived experience on your Board will work in practice.

Centring lived experience on a Board of trustees is about more than just having the voices of those with lived experience on the Board or engaging with the Board. It’s about creating a culture and an environment where those voices can be heard and genuinely influence decisions. There is no right or wrong way to do this, it will be different for every organisation.

For more considerations around how to create an inclusive Board culture, read the 2027 Coalition’s Missed Expertise report.

The following are questions you should ask your when considering how to do this.

What governance decisions do you want lived experience to influence?

Consider whether there are particular decisions where it will be really important that lived experience has an influence. You might decide this is every decision the Board makes, or focus on certain strategic decisions.

Some decisions that require the input of specific professional expertise (eg., financial decisions) are delegated to a Committee or a smaller group of trustees. However, remember that the principles that sit behind that decision often do not require professional expertise. So, think about how a wider group could be involved and influence those decisions too.

What type of involvement is right?

You will need to agree to what extent lived experience should influence Board decisions. It might be that you want lived and professional experiences to have equal weight, for lived experiences to be weighted more heavily, or it might be that you want to start by using lived experience as an input, but alongside many other considerations. It might be that this is slightly different for different decisions.

But being clear about this up front will help you design how best to make this happen. For example, if you are looking for input—an advisory Board to the main Board might work better. If you want shared decision-making, you will need to have trustees with lived experience on the main Board.

Remember, the further towards the right-hand side of the involvement spectrum is where lived experience is truly influencing your organisation.

Many of our Research Partners talked about moving away from having ‘Trustees with lived experience’ —and therefore trustees who were without lived experience —to emphasising lived experience as a requirement when recruiting new trustees, but alongside other skills that the Board needs. Having a Board of trustees that have a mix of lived experience and relevant professional experience, increases the influence of lived experience in decision making in an organic way, and could reduce the feeling of tokenism that ‘lived experience trustees’ often report. There are settings where this might be more challenging however, for example with children and young people, who haven’t had the opportunities to develop the learned or professional expertise yet. Think about whether this would work in your organisation.

There are several different structures you could consider. The following are just three examples:

  • Recruiting trustees with lived experience to your Board (an example is having three ‘young trustees’ for a charity supporting young people). It’s important that this doesn’t feel tokenistic. We heard from several interviewees that hiring a single trustee with lived experience, without making changes to the board dynamics or culture, led to feelings of isolation and unintentionally placed the individual in a role of spokesperson for others with similar experiences.
  • A shadow board or advisory panel of people with lived experience that advises the main Board of Trustees. They may not have legal responsibility or direct decision-making power, but you may decide you want them to have a considerable influence on governance decisions.
  • Recruiting trustees who have a mix of lived and learned experience. This encourages trustees to use their experience in the round.

There is no right way, and these three ways aren’t the only options. You will need to work out what is best for your charity, drawing on the answers to the questions that come before this and the decisions you made in Step 2.

Who will make this model work and what additional resources do you need?

Consider what you’ll need to do to support your new governance model. Examples of additional structures you might want to put in place are buddy schemes, a Board support worker, and inductions or training for new and existing Board members. It might require more time from staff to prepare for Board meetings, or a different way of working for trustees. All of this will take time and resource, so you need to consider how you will make this work.

Trustees are important in making this work—both by how it is designed but also how they can adapt to the new way of working. But also consider whether you will need others to support you. Are there others who can support you to reach out to a different pool of people when recruiting trustees? Are there members of staff who will play a role in supporting your new governance model? How will your leadership team need to do things differently? For example, will you still prepare Board papers in the same way, or will that need to change?

What skills do we need to develop?

Consider whether staff, trustees and experts by experience will need to develop new skills to make your new governance model work. Will you need to train new Board members in any way? Will existing Board members need training? Might you be able to build a pool of future trustees from other experts by experience you engage with? Are there training opportunities you can provide to do this?

What is your timeline?

Will you make all these changes at once? What feels like a realistic timeline? What do you need to do first?

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Case study: Young Manchester’s Co-Chair and Co-CEO roles

Young Manchester felt that youth boards, advisory committees and one young trustee only got them so far.

After trying these approaches, the charity now ensures lived experience is centred within their governance structures by having two Co-Chairs, one of whom is a young person, and requiring a minimum of three trustees to be young people.

The charity is also run by two Co-CEOs, one of whom is a young person, as the charity wanted to make sure that all operations had a youth voice.

Asking staff who were young people to make recommendations at a governance level led to the structure they have today. This model has helped Young Manchester to shape its services with a youth voice perspective and redistributed power into the hands of young people, a balance they continue to work on and improve.

Case Study: Governance at Your Voice Counts

In 1991, Your Voice Counts set up its board which had a majority of the board with a learning disability.

As an organisation it has always sought to include experts by experience in leadership roles where they can directly influence and shape decision making. This is currently modelled with a lived experience co-chair and another co-chair who supports and compliments the role and range of expertise between the two people.

YVC says that the investment to appoint experts by experience to directorial positions has been ‘key to the board’s success’. The recruitment process involves different methods such as practical workshops that enable applicants to showcase the skills they can bring and the values they hold.

People with lived experience on the board participate fully in board meetings and discussions. The board have embraced new ways of working to ensure those with learning disabilities can participate meaningfully which has enhanced learning as a board.

Refining this approach has been part of the learning and in recent years YVC hired someone to support the Co-Chair (with Lived Experience) showcasing its journey of iterating and improving its involvement practice. The Board is also supported by a member of staff responsible for ensuring that governance is accessible.

Step 4: Prepare for meaningful and safe delivery

Once you’ve got structure and processes in place to support your approach, you’ll want to put these into practice. While this will not always be done by senior leaders, senior leaders should make sure that delivery is meaningful and safe for everyone by setting clear policies and principles around delivery.

These considerations will be highly dependent on your charity and its context, but in this guide, we’ll explore some examples that will apply to most charities. It is likely you will have other considerations.

For particular groups, there will be additional considerations—for example, for children and vulnerable adults, additional safeguarding measures should be in place.

Role of senior leaders in Step 4

  • Set clear expectations around how certain situations will be navigated.
  • Be clear about the principles and values that should underpin the delivery of involvement work.
  • Support your colleagues to make decisions that result in meaningful and safe delivery of involvement work.

4.1 Ethical considerations

Involving experts by experience in your work should never come at a cost to those individuals. Tokenistic actions or exploiting a person’s lived experience is detrimental to that person and your charity. Consider what might be relevant for the people you are supporting.

The following are prompts and suggestions that you will want to add to:

  • How will you ensure experts by experience have the privacy and anonymity they want while sharing their stories, expertise, insight or making decisions?
  • How will you ensure experts by experience and staff are not re-traumatised by their involvement?
  • How will you ensure everyone involved has given their consent to take part, and does not feel pressured or hurried into involvement?
  • How will you ensure appropriate safeguarding measures are in place? Will this be different if you are facilitating peer-to-peer work?
  • How will you ensure everyone involved is clear about what can and can’t be influenced?
  • How will you ensure there are clear feedback loops established so everyone will be able to hear about the impact they had on a decision or delivery?

Senior leaders should answer these questions and be clear about expectations and standards regarding ethical considerations. They should also ensure that colleagues are following these when delivering involvement work.

NPC’s Listen and Learn gives more guidance on using qualitative research and ethical research practices.

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4.2 Ensuring you have diverse insight to draw on

A lack of diversity within the experiences you are drawing upon can lead to biased insight, or the insight of only a portion of those that your charity is trying to support.

Senior leaders should focus on increasing the diversity of lived experiences that are centred within their charity to further its impact and be relevant to more of the people they seek to support.

Many considerations here are important at the point of delivery, but senior leaders can emphasise the importance of diversity of experience and should consider how they can support and encourage it by setting expectations and/or policies around the following:

  • Recruitment of experts by experience and staff to take part in centring lived experience: What channels will you use? How will you reach people with diverse experiences? Are there partners or peers who could help you?
  • Removing barriers to entry: How will you remove barriers to taking part (eg., travel costs, childcare, language, confidence)? Are you putting unnecessary requirements on role descriptions that limit who can take part? Could you be more flexible in how people input or engage?
  • Making engagement inclusive: How will you equip everyone with the skills to participate or facilitate fully so that you hear from everyone? How will you make spaces as safe and inclusive as possible? Can you partner with others to support you?
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Involving experts by experience in step 4

Listen to experts by experience to understand how you can best answer these questions and tailor your response.

Remember that this will require ongoing listening and sense-checking to make sure your approach is right.

Applying Step 4 to your charity’s governance

  • Ethical considerations: Questions to consider might be: what safeguarding procedures, and policies might you need to introduce to your governance? How will you ensure a safe space in Board Meetings?
  • Diverse input: Where and how might you be recruiting for new trustees? What skills are you specifying in your job description? How are you making your governance accessible so that you attract a diverse range of trustees?

Further resources

The best way to approach centring lived experience will inevitably vary depending on the groups your charity works to support.

Many specialist organisations have shared learning / advice for particular groups which may be useful as you consider this within your own organisation, for example:

Make it count

Why impact matters in user involvement

Find out more

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