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 they have participated.
Some people may have additional and very specific 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 important to ask people if they have any additional needs and what reasonable support they need to enable them to take part.
When people with lived experience become involved in your work, there is always a chance that challenging situations could occur. This shouldn't put you off reaching out to people. But 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 be able to manage challenging or difficult situations? What training can you access to ensure you feel confident and have the required skills?
Encourage participants to really think about whether they are ready to share their experiences, and what they are comfortable with. For example, would they be at 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. This will enable 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 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 a great opportunity for participants – both for the good of the project and for their own 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. However if the opportunity is longer term or 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.
Time to Change volunteers, for instance, must undertake training in how to approach members of the public and have conversations about alleviating stigma and discrimination, as well as how to handle difficult situations. Only after they've completed this training can people take part in that activity; those who express an interest in going on to co-ordinate future events are then given further training in co-ordination.
Sheffield Users Survivor Trainers (SUST) developed peer support for trainers, which includes encouraging them to debrief after delivering training, providing peer support at SUST meetings and creating opportunities for trainers to work in pairs.