For people with lived experience, participation can sometimes be stressful or distressing – especially if you're asking them to share personal stories. It's essential to be clear about what support is available throughout: before, during, and after participating.
Some people may have additional and particular support needs. For example, a blind or partially sighted person might need large-print paperwork, information in other formats, or a carer or personal assistant in attendance. It's essential to ask people if they have any additional needs or require reasonable support to participate.
When people with lived experience become involved in your work, there is always a chance that challenging situations could occur, but this shouldn't put you off reaching out to people. Think about what support systems are in place in your team. Do you have a dedicated member of staff you can call upon if needed, or is everyone trained to manage challenging situations? What training can you access to ensure you feel confident and have the required skills?
Encourage participants to think about whether they are ready to share their experiences and what would best accommodate this. For example, would they ease being interviewed by the media or presenting at a public event, and have they considered the potential longer-term consequences of doing so?
Most importantly, be clear from the outset about what support you can and cannot provide, thus enabling people to find alternative sources of support if necessary and to make an informed decision about whether it's the right time for them to be involved at all. Perhaps there are other ways they can influence or participate, such as attending a focus group or completing a survey. These can be less intrusive and have as strong an impact.
Nikki explains her journey working with Mind and the now-defunct Time to Change, the support she received and the benefits she has experienced.
"It's very easy for an organisation to give you many opportunities, but it's not easy for an organisation to support you through those opportunities and see you out the other side."
Training can be an excellent opportunity for participants – both for the project's good and for their personal development – but be clear about how much of a commitment the training is likely to be and whether you can pay expenses for them to attend.
It's also important to communicate whether training is a prerequisite for taking part. For example, will people need to attend an induction before speaking at an event?
Training isn't always essential; there wouldn't be an expectation for people to attend training before attending a focus group, completing a survey or joining a service-based forum. For longer-term opportunities or those that focus on a specific topic or methodology, it will be beneficial to those taking part and your work to offer training in these areas before the work starts.
Sheffield Users Survivor Trainers (SUST) developed peer support for trainers, including encouraging them to debrief after delivering training, providing peer support at SUST meetings and creating opportunities for trainers to work in pairs.