All too often, patient participation in the mental health field looks more like tokenism than genuine inclusion. Maddi, who trains mental health professionals as an Expert by Experience, examines how patient participation can look if implemented effectively, giving people like herself the space to be heard.
I have been a mental health volunteer for just over a year and recently landed a paid role working as a person with experience of mental health difficulties, delivering training for postgraduate students. I now work in both of these roles at a mental health centre.
Expert by virtue of life experiences
What I do is known as participation as an Expert by Experience. Expert by Experience means that I am educated in the area of mental health not academically, with a course or degree, but because of my own life experiences. My participation looks like going to visit researchers, clinical staff, or other mental health specialists, and telling them what I think of their work or their next steps, based on what I know it is like to experience the symptoms in the people they work with.
"If you’re a clinician, can you honestly say you’ve tried to understand a contrasting point of view?"
I work as part of a team - we're all Experts by Experience. So talk to these staff, answer their questions and help with their work.
This is the bare bones of participation.
If it were all like this I would consider it tokenism: a tick box exercise, not out of genuine interest. In this case, staff asking questions without us Experts by Experience having the opportunity to do the same is a sign of poor participation because it is a one-way thing.
Staff working in the mental health field may already have their own thoughts or goals in mind. For example, a researcher may have an opinion on what their outcome will be, and asking those with mental illness would just be done to say it has happened. Or they may try to get information from participants on their opinion but twist it to agree with the researcher’s prior thoughts.
Thankfully, there are ways to improve poor participation work. For example, working with contributors to make them feel that the work goes both ways as a two-way interview is great. Meetings should be loose enough to allow participants to ask their own questions and give as much or as little detail as they feel comfortable and propose further lines of enquiry.
Going back to the researcher example, it is much better to be open to the suggestions of participants, allowing their voices to be heard throughout the process.
After all, the point of involving them is to see what those who live through the subject really think about it. Of course, when it comes to mental health it can be a very sensitive topic, especially if participants are young such as myself. Anybody, particularly those with lived experience, might find mental health a difficult subject to talk about.
So to make involvement positive for all involved it’s really important to have support in place. This could be a designated area to step out into if someone needs a break, or someone on hand to chat or focus on how participants feel after the session, like an informal debrief. Nobody should ever be pushed to answer or expand upon their thoughts - it could be a painful topic to be asked about.
Often, a single session for a topic - or even multiple topics - may be arranged. That’s fine as an introduction but projects that are worked on over time give everyone a better chance to achieve a good outcome. Sometimes participants, like anyone, may have a bad day, or forget to say something at the time.
If a project is not possible, there could be someone available digitally to take further questions or information.
The space to be listened to
Having large groups of participants is another way that sessions can be made more comfortable for people with lived experience. This not only allows them to bounce off each other’s ideas but also gives a sense of community within the work, allowing them to socialise with those who can understand their viewpoint. This can be a really positive experience.
To recognise what good participation looks like it’s important to know what works well for you or your participants. Have a conversation about what is wanted, what is intimidating, and what would be a deal-breaker. Open, honest conversation is always a good idea.
- See more: Rejecting the "service user" narrative in shaping mental health policy and practice
- See more: Which voids can be filled through peer support?
With regards to the points already mentioned, you could think about how questions are being asked; is there space for feedback and an environment in which someone feels comfortable to respond to questions?
Does it seem like your point is being heard or, if you’re a clinician, can you honestly say you’ve tried to understand a contrasting point of view?
Have ways to get further support been clarified and has there been discussion about creating a safe space? Is there room for a further discussion? And how many participants are involved?
And if you’re still not sure how well participation is going, the most important thing to remember is this: participants are not there for interrogation, and they deserve a positive experience just as much as the leading staff member does.