Clothworkers' Company logo featuring a shield flanked by two griffins.

3 ways that charity trustees can centre lived experience

By Manya Beri 31 May 2024 5 minute read

A recent seminar hosted by NPC, in partnership with The Clothworkers’ Company, looked at how charity trustees can centre lived experience in their work. The event was chaired by Katie Boswell, Associate Director at NPC, and our speakers were: Aphra Tulip, Vice-chair of Rethink Mental Illness, Penny Lawrence (Chair) and Catherine Lebadou (trustee) of Refugee Action, and Tamzin Reynolds (National Youth Engagement Manager), Abbey Bree, and Stephen Chance (members of the Youth Voice Initiative) of St Basils

In the charity sector, the integration of lived experience into governance and decision-making is becoming increasingly recognised as essential. And charity trustees play an important role in this.  

Here are three key tips on how trustees can help to centre lived experience:  

1. Boards need to shift the power 

Efforts to embed lived experience into an organisation need to start at the top, and one way to make this happen is by inviting people with lived experience onto the board of trustees. 

Refugee Action have taken significant steps to empower individuals with lived experience, referred to as ‘Experts by Experience’ (EBE) at the charity. By transitioning to a majority board composed of EBEs, they’re ensuring that the voices of refugees and asylum seekers are not only heard, but instrumental in shaping the organisation’s direction. This approach has allowed the charity to appreciate the diverse perspectives and valuable skills that EBEs can bring, even if they don’t have the same qualifications as other board members. However, they have over time realised that representation is not enough, and wish to further shift power by appointing an EBE as Chair of the organisation. 

Similarly, the governance structure of Rethink Mental Illness has embedded lived experience at all levels, with regional representatives bringing firsthand insight as carers or individuals with mental health conditions. Trustees appointed by the governing board (co-opted trustees) complement this with technical skills, ensuring amix of expertise. Rethink address imposter syndrome among new trustees through rigorous selection processes and fostering a welcoming environment for all.  

St Basils build confidence in young people with lived experience of homelessness through various forums, helping them work their way up to governance roles. They also implement ‘quick wins’ to build trust and engagement, a strategy that effectively fosters confidence and commitment, encouraging people with lived experience to become trustees on their board.  

However, trustees must keep in mind that having a single voice representing lived experience on a board can place too much pressure on the individual. 

 2. Trustees need to consider the many different aspects of inclusion  

It is important that trustees consider the various aspects of inclusion to ensure that governance structures are not only representative, but also empower those with lived experience. 

St Basils engages young people with lived experience of homelessness at all levels, from house representatives to advisory boards, driven by their negative experiences and desire for tangible change. Through initiatives like the Youth Voice podcast and ‘Time to Talk’ sessions, young people can express their opinions and influence the organisation’s decisions, ensuring that their voices are both heard and valued. 

Similarly, Rethink Mental Illness involves people with severe mental illness at every level of their operations, from informal engagement (like surveys and focus groups), to strategic decision making, where individuals make up advisory boards or regional panels. Acknowledging the varying challenges faced by people with severe mental illness and busy caregivers, the charity sees the inherent value in informal engagement alongside formal methods. Rather than adhering to rigid rules, they are committed to adapting engagement to suit the specific needs of those with lived experience. The trustees also ensure that everyone grasps key terms like ‘involvement’ and ‘co-production’, fostering a shared language.  

Refugee Action has also implemented processes to facilitate inclusion, such as providing upfront travel payments and establishing buddy systems to support new EBEs. For their strategy, the charity made sure to listen to the views of their lived experience members, allowing them to take bolder decisions. Additionally, they have adjusted their skills and perspectives audit to evaluate the unique contributions of individuals with lived experience.  

3. Trustees should embrace the value of lived experience and drive continuous improvement 

A breadth of experience is key to a good board and fruitful discussions. Integrating lived experience can reconnect all trustees with the mission, improve decision-making, and lead to better quality projects and efficiency. It fosters openness to different perspectives and creates impactful moments for individuals with lived experience, boosting their confidence and assertiveness.  

However, while centring lived experience is essential, the work is never truly done. Trustees must continue to reflect and improve, maximising the benefits of lived experience on their boards by routinely assessing involvement, identifying gaps, and maintaining a transparent and honest culture to effectively manage expectations. 

Refugee Action demonstrates continuous improvement through their training and capacity-building efforts. They simplify complex documents, provide specialised training sessions on topics like finance, and create task and finish groups to help EBEs engage meaningfully. 

St Basils prioritises feedback and continuous engagement with young people, seeking their input on service needs and implementing their suggestions. This iterative approach to improvement is backed by senior leadership, ensuring that engagement is not tokenistic.  

Whilst Rethink Mental Illness consistently evaluates its procedures to better incorporate individuals with lived experience. They follow up after surveys and feedback sessions, ensuring individuals are thanked and informed about the impact of their input.  

Our next free event for trustees will take place on 20 June 2024. It will offer trustees the chance to network in person, connect with others, and think through how they can shift their practice to meet today’s challenges. 


Related items