Webinar: Lived experience on nonprofit boards

Watch our Lived Experience webinar

We launched our Lived Experience on nonprofit boards online resource on 15th April 2021 with a webinar. Caroline Copeman, Fiona Ash and Jacqueline Williams from CCE’s governance team were joined by Judith Davey (Chief Executive, The Advocacy Project) and Darren Murinas (Chief Executive, Expert Citizens CIC) to explore this topic and introduce some of the themes covered within CCE’s online resource. Their discussion considered the benefits and value to boards of including trustees with lived experience and how to overcome some of the barriers and issues that may be encountered.

Closed captions are available for this webinar via the CC button along the bottom of the video screen. Please note that this is an automated function. We do not have control over the words produced by the software and they may not accurately reflect what was said by the speakers.

Webinar poll results

During the webinar the audience was asked three poll questions.

Please find the results of this poll here.

Webinar Q&A

During the webinar, there were many interesting questions from participants that we weren't able to address due to time constraints. The webinar hosts and speakers have provided some responses to these, grouped into themes, which we hope you will find helpful.


If we have trustees with lived experience, does it matter if they aren’t also our service users?

Check your constitution (governing documents), but we don’t know of any reason why not – indeed we would encourage it

If service user trustees are also directors they don't represent service users in law. They have the duty in Company Law to promote the interests of the company, not any individual part of it.

We are not really advocating ‘representation’ in that respect. We are more interested in ensuring a range of different voices are around the board table, including those with lived experience of the cause or challenge the charity exists to address. There are many other ways of getting ‘representation’.

Can there be difficulties in relation to possible conflict of interests?

Good practice is to declare any conflicts of interest at the time of recruitment and include these as part of the organisation’s governance risks. Otherwise in managing possible conflicts on an on-going basis, good practice includes reminding trustees to be alert to potential conflicts and to declare them at the appropriate times, eg. when board agendas/papers are circulated and in the Chair's introduction at the start of the board meeting.

Getting started

How do you attract and target individuals with lived experience to apply to join the board?

Charities often use professional head-hunters whose networks will rarely include those with lived experience of the charity’s cause. You could consider approaching organisations who have experience and networks or the Centre for Knowledge Equity (website and resources) or organisations like Expert Citizens who have connections. Social media is important (#livedexperience).


How do you ensure that service user trustees accurately represent the range of service user voices, not just their own personal views?

We don’t see the inclusion of trustees with lived experience as being about representation in that sense. We would expect every trustee (with their diversity of experience) to acquaint themselves with the breadth and depth of needs and views of both prospective and current services users.


Are there any practical impediments to the participation of trustees with lived experience, such as time off if they work, transport, or timing of meetings?

Often it’s about how information is presented, which should be done in a way that anyone can understand. With current Charity Commission regulations, it is hard to pay trustees for their time spent in the role, but there are other ways to recompense trustees, such as support via a development budget for new trustees.

Did you have to spend time working with lived experience trustees to avoid a single issue dominating their input at meetings?

This is not an issue that only applies to trustees with lived experience; other trustees will often focus on their specialist area and not contribute as much to others. We shouldn’t put trustees with lived experience of the cause in boxes – they have just the same responsibilities as any other trustee and should expect (and the whole board should expect) to contribute to all areas as part of their collective responsibility. It’s about being transparent about the nature and responsibilities of the trustee role and giving support to new trustees (with whatever knowledge, skills or experience they bring) to enable them to be effective in the role and confident about all aspects (even if they aren’t, for example, a financial expert). Boards should not expect new trustees to be fully up to speed right from the beginning but be prepared to support and help them develop their understanding and the necessary knowledge.

Practically, how do you deal with financial decisions in times of crisis, even insolvency risk, if some of the trustees might have difficulties that limit their ability to absorb the issues, as the complexity must of necessity grow?

It can be hard (and hard for all trustees) when there’s a crisis, but with the right coaching and support (from other board members or a member of the executive team) everyone can make a valuable contribution. It’s really important to help everyone on the board understand how things work and how they might contribute effectively in a meeting. Prior preparation is essential as well as offering support.

‘Traditional’ trustees need support too on how to work with trustees with lived experience; it can be uncomfortable (for everyone) to hear experiences that might be completely outside their own. It can be helpful to find ways to overcome that discomfort and encourage greater equality, for example by occasionally holding meetings where the service is delivered, so that trustees have an opportunity to meet those who are being supported and hear their stories, in a location where those with lived experience feel safe.

How do you address power dynamics within the board?

Be alert; identify them; call them out!  Have board meeting reviews that address what works well and what could work better. Have an annual review, both of the board (external every three years) and of individual trustees. You will get power dynamics - indeed we want people to challenge each other - but it needs to be focused on improving governance and making better decisions.


What training do you need to do with non-service user board members to help them value the voice of service users fully? I am thinking of a typical profile of a non-profit trustee coming from the "great and the good" and perhaps not having much of their own lived experience of interacting with service users.

Our starting point is that the board wants to learn about different lived experiences and is open to hearing different views.

We need to recognise that lived experience is a ‘knowledge’ just as much as, for example, knowledge of accounting, and to value it equally. It shouldn’t be about introducing those with lived experience onto your board as a box to be ticked (‘because it’s the right thing to do’).

In preparing a ‘traditional’ board for this change, it can be helpful to bring in consultants, such as Expert Citizens. Having lived experience in the room is more likely to result in a diverse range of views being heard which can be uncomfortable. It can be a major change for many boards – having those with lived experience fully participating in the boardroom, is very different than, say, hearing a case study from a beneficiary who then leaves the room.

Boards face ever-increasing pressure, from the Charity Commission and others, to be professional governance bodies in tight control of HR, IT, finance, safeguarding etc. Trustees need a lot of technical and professional skills to make it work. How do you make that work?

Boards can overthink the legal requirements of what it is to be a trustee, and you could argue that our model is out of date. The organisation will have an executive with those specialisms - the board needs to be able to hold the executive to account by asking questions.

No matter how hard managers/professionals try, they will use jargon; do you have any techniques/processes for de-jargonising board papers/policies etc

Every sector/organisation has its own jargon (its own language).

We just need to be conscious of it and alert to the need to speak in plain English. The board needs to hold the executive to account for this by alerting them to wording that isn’t clear or is full of jargon. Get back to basics!


How do you know that you were a token and not the first of others?

This question was asked in response to the webinar video clip in which Naana Otoo-Oyortey describes an instance when she felt she was going to be a ‘token’ person on a board.

The truth is that you don’t! However, if there has not been evidence of diversity on the board previously then the context of the recruitment could lead you to feel that there is tokenism eg. is it because funders have asked the question? An honest message from the board that we have not got diversity right and are working on this (as part of an organisational value that includes staff) helps to dispel this fear.

I absolutely agree that there shouldn’t be recruitment of ‘token’ representatives - but if a charity has an all-white board and wants to diversify its membership, how should they start?

This is touched on in another question about tokenism (above). Part of a diversity review does identify:

  • What is missing (eg. different perspectives)
  • What might be some of the barriers to attracting diverse members?
  • What do we really have to look at to improve “inclusion” on our board - not just being invited to the party but also asked to dance?!
  • Being clear about skills needed which can be combined with race/ethnic diversity can help potential trustees feel they are adding real value

Definitions of 'lived experience' and wider context

Is there a definition of lived experience? My charity helps people with a specific disability. Could "lived experience" be a family member who has any disability or does it have to be that specific condition, or even having used this specific charity's services? How narrow or wide is the definition?

There is not a specific definition. It’s more about making your board more inclusive overall, rather than conforming to a narrow definition.

In this online resource, we are, especially interested in encouraging the idea of organisations actively seeking to ensure they have trustees with personal experience of the challenges they are trying to tackle (but that doesn’t have to be as a service user).

Is it enough for a board to have researchers who also have lived experience of the condition or do we need to have people without the professional experience of the condition?

It could be either.

Do you think funders should be asking for/placing a priority on organisations which can demonstrate their commitment to having people with lived experience being meaningful and proactive members of the board?

Only if the funders are doing the same ie. that decisions are made with input from those with lived experience!

Naming the experience

I’d be interested to hear views on the term "service user". I think it tends to put a barrier between them and other trustees. What about the term "service partner"?

We’re not really keen on any specific labels which encourage people to be put in boxes when all trustees have the same legal responsibilities and accountabilities; and not keen on ‘user’ as the word has connotations of addiction; but as we heard in the webinar, if the trustee with lived experience would prefer to have such a title, that is of course their choice.

What’s wrong with just referring to our fellow trustees with lived experience as trustees? We don’t refer to other trustees by their experience. Do we really need this label?

Totally agree about not assigning labels but if the trustees themselves prefer that title that’s fine.

We’re differentiating between Direct LE (actual use of MH services over time) and Indirect LE (working with people with MH or a close family member with long term MH) - how far is it legitimate to use Indirect LE?

If the indirect (or direct) lived experience is current, that’s the most valuable (rather than past life experience where the situation may be very different now). Indirect lived experience, such as the experience of a carer of someone with mental health issues, can be very useful.

Direct & indirect lived experience? Are there people without lived experience?

We all have life experience; we all bring very different experiences into the boardroom.

Our board mainly consists of trustees with personal experiences (racial) relating to our charities work, however, is it better for the board to gain academic qualifications or remain self-learned especially in areas relating to professional competencies?

It’s up to individuals to make the choice whether to seek such qualifications but if they do, they should be supported in that endeavour.

We have audiences rather than service users. This has been really interesting as I now realise we should explore who has "lived experience" relevant to us - probably music enthusiasts (which all trustees are!), musicians and other key people in our sector. At the same time we need to broaden our welcome and inclusion to ensure everyone feels they can belong to our community - understanding lived experience should be central to this as we strive for greater equity and inclusion.

Exactly – thank you!