If someone was making a decision that would affect your life, would you want to be in the room? If you’re anything like me, you’d be baffled if people made choices affecting your health, housing or happiness without asking you, or without talking to someone else in your situation.

In the charity world, this happens more often than we might like to admit. It’s understandable why. If you have a lot of people who are experts in housing policy or the science of cancer care, they have the knowledge needed to make certain decisions. Charities are full of passionate, knowledgeable people. But it’s the sad truth that many of them don’t have representation from the people they serve. They’re trying to be the best they can for their service users, but they end up with a room full of people with great skills and knowledge, and no “lived experience” of the issue at hand.

As recruiters of charity trustees and chief executives, we’re seeing more and more requests from charities to find trustees with lived experience. But what does this really mean? How can charities make the most of lived experience? And what role can recruiters play in finding, recruiting and retaining talented people with lived experience for charity boards?

What is lived experience?

Put simply, it’s having experience of the actual issue that a charity works on. It means having people with experience of homelessness on the board of your charity for homeless people. It means having people who have been refugees or displaced in a humanitarian charity. It means having Blind trustees at a sight loss charity.

Lived experience isn’t an optional add-on  

Lived experience is critical to charities delivering services. Getting it right makes the services, organisation and ultimately the system better.

But you can’t just add a dash of lived experience into your organisation, without changing things at the deeper level.

Let’s say your charity supports people who’ve recently come out of prison, but you don’t have anyone with related experiences on your board. Saying “we’d like to get one or two people on the board who have lived experience” isn’t going to change things overnight. It’s an issue that will take more than a recruitment process to solve.

Charities may need to make big changes

Charities say they want lived experience on their boards but are often unaware of or unprepared for the changes they need to make for it to work.

You don’t just plonk somebody on a board. You don’t positively discriminate either. That’s tokenism. Tokenism does more harm than good, and good recruiters will challenge you on this, helping you avoid making a tokenistic appointment.

To understand how charities and recruiters can get it right, we spoke to Mark Johnson, the CEO of User Voice. He talked to us about his experiences as a leader with personal experience of the criminal justice system.

If you ask for lived experience, be prepared to listen

Mark helped us understand that people with lived experience often feel like they are being used by the charity to help tick boxes. If a charity just wants to be able to say “We have two people with experience of homelessness, or childhood cancer, or surviving domestic violence on our board”, that’s not going to set them up for success. The whole board needs to be genuinely open and willing to learn from new perspectives.

Mark talked to us about his first experience on a board. He was intimidated. It took him six months to realise that the board was lost in reporting and lacked clarity in its purpose. “They were talking in another language.” It was Mark who helped the board to understand simply what the organisation was about.

Mark helped the board to get clear on its mission and talk in plain English. Without an outside perspective, it can be really difficult for a group to see itself clearly. It’s easy to drift away from our purpose, get lost in detail, and start talking in a jargon that only a few of us understand. It means many charities miss out on valuable insights.

The harsh truth, as Mark puts it is, “people who are making the policy do not understand the living reality of people like me.” And “lots of people on the boards are there for their own motives and careers – people with lived experience want to make change from the heart.”

“Power gravitates to power” says Mark. “It wants to use lived experience. It doesn’t want to acknowledge or address it or set the terms in a fairer way. People calling for lived experience often will regret calling for it. Bad practice gets highlighted. User feedback is hard to listen to.”

You can’t just listen, you also need to share power

“You can’t leave it to the executive team to engage service users” says Mark. If you’re serious about learning from people with lived experience, you need to develop a strategic approach to being service user led. You need to gather feedback from your service users, and you need to genuinely listen to and act on what they tell you.

Don’t assume you need a trustee

In Mark’s experience, learning from people with lived experience often works best through an adviser to the chair role. This is independent from the executive team. It could be a trustee role, but it doesn’t have to be. It could be a paid advisory role.

Use reporting lines to signal importance

“What is important is that the role is specified clearly, it works closely with the chair and CEO and has equal power. They need a mandate from the chair to access all areas, with a reporting line directly back to the chair and the board to give the role profile. People throughout the organisation will see that the chair is taking user voice seriously having given the person with lived experience real authority to make change. This triggers behavioural change.”

Mark also suggests that lived experience roles need to be research-based and consultative. People need to be trained to do it properly, and the person delivering the role must have a connection to service users. One of the great values of this approach is that lived experience gives a person the authenticity to ask the right questions and be heard.

Charities work on some of the most vital and sensitive issues in our lives. Many of us would hate to talk about our experiences of violence, serious illness or time in prison with a stranger. But if we feel that the other person knows where we’re coming from, has had the same or similar experience as us, and isn’t judging us, we can feel more confident that it’s safe to share our thoughts.

Less talk, more action

Once service users have been heard they need to have real involvement in the design and delivery of services, says Mark.

If you ask someone “What do you need? What changes would help improve your life? How are we missing the mark?” and then you go away and make a whole raft of changes without running them by that person, you still might get it wrong. A quick check-in won’t cut it. You need to share the process with them, inviting them to get into the nitty gritty of designing and delivering new solutions.

Don’t expect one person to change the whole culture

Bringing a single person onto the board with one set of experiences is not going to create change. Too often, we see charities do it in the name of diversity. They expect one person to carry the voice and influence of an under-represented group. This sets people up to fail.

If they’ve never been on a board before, can we reasonably look to them to create change in an organisation? Boards can be intimidating places. Expecting somebody who is different from everybody else (whether a diverse appointment or somebody bringing a unique set of experiences) to come into this environment and effect change without support is ludicrous.

What we need is a sensitive approach to addressing the needs of the person and appreciating that the nuances of their role and implementing systems so that somebody with lived experience is enabled to take part effectively.

Get clear about your goals

You should start by asking some simple questions.

  • What place has somebody with HIV got on the board of an HIV charity?
  • Why do you want them in your organisation?
  • Why do you need them? (Are you ticking a box?)
  • Are you really up for the challenge?
  • What training and support are you giving people so they can step up to the role?

Somebody with HIV and professional experience at board level might be harder to find as they might have had more limited chances to advance their careers. Could you find a manager level person, as opposed to somebody with strategic leadership experience? Will they be equipped for their role, and if so, how will they also be supported to operate as an effective trustee?

Lived experience isn’t simple. We need to be thoughtful, respectful and committed before we start to recruit people who have it.  But we shouldn’t shy away from difficulty. We need to find the right people because it will benefit them (giving them more opportunities to grow) and us (our charities will deliver better outcomes). Ultimately, we all benefit because we’ll be creating a more inclusive world.

Three practical steps you can take

Mark left us with a formula to remember. It’s applicable whether you’re looking for a trustee, an adviser, new staff or just curious about how to bring in lived experience into your organisation. Here are the three steps.

1) Listen and include

2) Offer opportunity, encouragement and support

3) Provide a vehicle for change

There’s no doubt in my mind that charities and recruiters need to take urgent action to get this right. As charity recruiters, we’re committed to doing everything we can to help charities find, recruit and retain people with lived experience. Let’s start by listening to the many amazing experts with experience who are already sharing their insights.

Will you join me?

At Peridot Partners, we’re specialists in recruiting executive and board roles.

If we can help, please contact Grant Taylor via email at grant@peridotpartners.co.uk