Having worked in a range of charities over many years, I’ve often been struck by the seeming disconnect between what people at the top of charities think about and prioritise and what the people the charity is designed to serve think about and prioritise. Too few charities have people with personal experience of their causes in leadership or oversight roles. Who gets to decide what policies are prioritised, what programmes are designed, and ultimately, what gets funded? Even the language that is used can be problematic, with terms such as beneficiaries and users creating an unequal power dynamic right at the heart of the way charities work.

Many organisations often involve people with relevant experience to contribute their views through research or as a panel of service users which the executive or board engage with. The problem is that in many cases these people have no real power over the issues that affect them more than anyone in the decision-making process. Who gets to decide what is being researched in the first place?

I believe that improving the mechanisms for engagement of people with lived experience as trustees and senior leaders will help the connection with the organisational purpose remain strong, ensure the work stays in line with the organisation's values, ensure better, more informed decision making, and improve board effectiveness.

This write up combines desk research, one to one interviews and an online survey conducted during Spring and Summer 2020. Even though these are ideas I’d been thinking about for a while, the work was conducted against quite an extraordinary backdrop. I’m very grateful to everyone who contributed their time, expertise, and ideas to this work, especially when there was so much going on. They and their organisations are all listed at the end.

When I set out to look at this issue, the problem I thought I was looking to address was how to engage people with lived experience better and more authentically within organisations. As I did my research, I soon found that the problem isn’t just that people with lived experience aren’t at the top table, but that the ways charities engage with them, can actually cause harm to the very people we set out to help. We do this in a range of ways. We encourage them to repeatedly share their stories of pain. We reduce them and their professional skills to their stories. We ask them to share their time for free, even making them feel bad for claiming expenses.

The charity had an event at the House of Commons. They played the interviews captured as part of a series of storytelling workshops but didn’t invite any of the people who participated in the programme to attend the event.

Someone put in his travel expenses as a mileage. And he did a four hour trip. And they were questioning his mileage. And it made him feel really bad.

People gave permission to tell their stories, but only if their face was hidden. And then the journalist showed their faces anyway.

I began to realise that the issue is more fundamental than I’d thought and, with covid 19 as a backdrop, and the spotlight firmly on entrenched issues of societal inequality, I set out to write what I hope are some useful thoughts about lived experience which will contribute to a more informed, shared understanding of the issues.

How have we even ended up with a model whereby that's not where the power is centred?


With grateful thanks to:


Firstly, I set out to define what lived experience is. In my time working in charities, I’ve heard people talk about case studies, real life stories, and now the terminology seems to have moved onto lived experience. These terms seem to be interchangeable. If we’re honest, when we’re talking about lived experience it’s a particular kind of person we mean. But I’m not sure if anyone would think of themselves as having lived experience and if we reduce someone’s life to a single story that doesn’t take account of the fact that our lives change, and that we are the products of multiple overlapping experiences and identities.

I’m 31. At what point can I stop saying I've got lived experience of being young?

It seems more useful to unpick the definition to understand that what is useful to charity policy development and programme delivery is to have access to a range of perspectives that have meaningful understanding of the issues that an organisation is championing. It is important to recognise that lived experience is something that you have but it's also something that you can develop and gain given that no one's life remains static.

Baljit Sandhu’s report, The Value of Lived Experience in Social Change,[1] defines lived experience as ‘The experience(s) of people on whom a social issue, or combination of issues, has had a direct impact’ and her work recommends how important it is to value lived experience as a key ingredient of social change. Some people who work in specific sectors have a lived experience of the social justice issue that that charity or third sector organisation is attempting to resolve.

However, even though people evolve, it is dangerous to assume that you can somehow absorb lived experience through being close to it. Sufina Ahmad of the John Ellerman Foundation distinguishes between professional experience and personal experience:

I had professional experience of working in learning disability services. I should at no point ever describe myself as having lived experience. It's lived experience to actually feel the situation in a really personal way to you.

Also umbrella terms like LGBTQ or BAME are unhelpful here where the experiences of people within these groupings are vastly different and individual. Lumping people together and assuming one person’s experience is representative of the whole is reductive, and it could be positively dangerous to extrapolate.

A consultancy set up to address issues of diversity, inclusion, and culture change in the social justice sector and beyond.
Lucy Caldicott runs ChangeOut, a consultancy set up to address issues of diversity, inclusion, and culture change in the social justice sector and beyond.

This page was last reviewed for accuracy on 14 September 2022