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Support during a lived experience opportunity

For people with lived experience of mental health problems, 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 before, during, and after participating.


What kind of support do you need to offer?

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. It's essential to ask people if they have any additional needs or need reasonable support to participate.

Managing challenging situations

When people with lived experience become involved in your work, there's always a chance that challenging situations could happen. But this shouldn't put you off reaching out to people.

Think about what support systems are in place in your team, for example:

  • Do you have a dedicated member of staff you can call?
  • Or, is everyone trained to manage challenging situations?
  • What training can you do so you feel confident in challenging situations?

Encourage participants to think about whether they're ready to share their experiences and what would best accommodate this.

For example, would they be at ease being interviewed by the media or presenting at a public event? Have they considered the potential longer-term consequences of doing so?

Being clear about the support you can offer

Be clear from the outset about what support you can and can't provide. This will help people to find other sources of support if needed. And it'll help them make an informed decision about whether it's the right time for them to be involved at all.

There might be other ways they can influence or participate, like going to a focus group or filling out a survey. These can be less intrusive, but still have a strong impact.

Nikki's experiences

In the video below, Nikki explains her journey working with Mind and Time to Change. She talks about the support she had and the benefits she felt.

"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."

Offering training to participants

Training can be an excellent opportunity for participants – both for the project and for their personal development. Be clear about how much of a commitment the training is likely to be, and whether you can pay expenses for them to go.

It's also important to tell them whether they have to do training in order to take part. For example, will people need to go to an induction before speaking at an event?

Training isn't always essential. You wouldn't be expected to go to training before going to a focus group, completing a survey, or joining a service-based forum.

But for longer-term opportunities, or opportunities that focus on a specific topic or method, having training before the work starts could help the people taking part.

Sheffield Users Survivor Trainers (SUST) developed peer support for trainers. This covered:

  • Debriefing after delivering training
  • Offering peer support at SUST meetings
  • Creating opportunities for trainers to work in pairs

Top tips for supporting participants

You could offer the following kinds of support:

  • Training (for longer-term roles)
  • Holding a pre-meet to discuss agenda items and answer any questions
  • Reminder texts, e-mails or phone calls
  • Helping participants to create a plan of what to do or who to contact if they're distressed
  • Going with people to interviews or events
  • Booking and paying for travel in case cost is a barrier to taking part

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