Experts by experience are invaluable in mental health: but how exactly?

8th Jan 2018
Challenging mental health inequalities
Mental health

This content discusses eating disorders, personality disorders, anxiety and depression, which some people may find triggering.

It seems irrefutable that the perspectives of those who have experienced mental health problems should be indispensable to those making decisions that affect their lives.

Experts and professionals have essential skills and knowledge, but most decision-makers would recognise (in theory, at least) that those who have personal experience of living with anxiety, depression, eating disorders, bipolar disorder, psychosis, schizophrenia or other mental health challenges can bring something special and different.

But what, exactly, do they bring?

As someone with a bipolar diagnosis and a decent CV of 'lived experience' myself, I’m personally very concerned with how to maximise the value that I can bring to my work in the mental health sector. How can I ensure that difficult experiences I’ve had in my life bring benefits to others in the future? How can I turn a negative into a positive?

On one level, I’m proud to adopt the current jargon and call myself an 'expert by experience' or 'person with lived experience'. It reinforces my efforts to take control of my story and use it constructively.

On another level, however, I find these labels quite othering. Putting my hand up as an 'expert by experience' sets me up as a different category of person (that is, in contrast with people who are not experts by experience). It can obscure the other kinds of expertise I have. It feels very different to be a person with lived experience than to be a person who can put on a lived experience hat: I can take my lived experience hat on and off, and I can put it on without other people knowing I’m doing it.

How do people with lived experience contribute?

Reflecting on all this, I have been thinking about the different ways that I, or others with lived experience, can contribute our expertise within the mental health sector. Some examples include:

  • A person with lived experience is named within a case study in a report or piece of social media content
  • A person with lived experience appears in a film
  • A person with lived experience acts as a discussant within a podcast, where they discuss issues with experts
  • A person with lived experience discloses themselves within a discussion or a workshop in order to make their point more strongly
  • A person intervenes in a discussion or workshop saying 'from my own experience' without disclosing the specific nature of the experience
  • A person with lived experience is an anonymous reviewer of a report or piece of content, commenting from a lived experience perspective
  • A person with lived experience is a member of an organisation’s Board of Trustees
  • A person makes a point that an issue would look like such and such 'from a lived experience perspective' but elides that the fact at it is their own experience they are talking about

I have mapped these in a grid with two axes: gifted versus owned, and disclosed versus anonymous:

A 'gifted' experience - the meaning of a 'gifted' experience is largely interpreted by colleagues, experts and others – the person offers it as an example which typically fits a broader narrative which is already carved out by others. The experience often becomes embedded within intellectual property owned by an organisation or expert (such as reports, papers, films and social media feeds).

An 'owned' experience - when an experience is 'owned' by the person, the person with lived experience takes a more active part in interpreting what their experience means; for example, by disclosing themselves in a workshop in order to make their point more strongly. Their experience is separated from the intellectual property of others.

Full disclosure - the second axis represents the extent to which the person gives 'full disclosure' or maintains 'full anonymity'. Appearing in a film, photo or being a member of a Board of Trustees fully identifies the person as someone with lived experience.

Full anonymity - an anonymous reviewer on a paper or piece of content, however, can bring their experience to bear on evaluating work, without disclosing it as their personal experience.

Lived experience diagram

From an organisation's point of view, the value that people with lived experience can bring takes on different dimensions depending on whether their contributions are owned or gifted, disclosed or anonymised. Gifted contributions play an essential role, especially as case studies for fundraising or report writing, and disclosure can be central to ensuring these examples are perceived as authentic and genuine.

But owned contributions can also be very valuable, playing a particular role in critical reflection, quality control, challenging assumptions and holding power-holders (including the organisation) to account. Disclosure is not always essential here – it may be that those with lived experience can offer a range of analytic contributions while staying anonymous (or only partially disclosing).

How can we get the most value out of lived experiences in mental health?

Personally, I have found that the majority of the opportunities I have to contribute my lived experience in the mental health sector have fallen in the 'disclosed' quadrant of the matrix, and I have been asked to 'gift' more frequently than I have been asked to 'own' my contributions.

The power dynamics here are complex, but the pattern of these opportunities raises a question in my mind around whether lived experience is being valued intrinsically (because of the substance of these contributions) or extrinsically (because of the it's simply just seen as 'good' to include these voices).

Asking the question of what added value, exactly, we are seeking from a lived experience perspective is crucial for deciding whether we need to request contributions that are owned or gifted, disclosed or anonymous.

Lived experience can add different kinds of value in different circumstances – and we should be open and reflective about times when it doesn’t appear to add much value at all. I suspect we would gain deeper, more meaningful value from lived experience contributions by doing this. And by providing a carefully thought out reason why we were asking people to make contributions a particular way, we might also find more people stepping forward to share their insights.

Wearing my own lived experience hat, I would say that the best way to honour the hard-won expertise of those who have lived with mental health challenges might be to honestly reflect on what, exactly, we value about it.

Both for experts by experience themselves and for the organisations whose work they contribute to, this would be the most invaluable thing of all.

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