It is important for people with lived experience of a mental health problem to influence Mind’s strategy, so that our future plans reflect the true needs and priorities of people with lived experience. We recruited a panel of 12 people with lived experience from across England and Wales to work with us and take a detailed look at our strategy plans and shape them.
We chose to work with a panel because we needed the same group of people to get to know our strategy work and be able to hold us to account for including their thoughts in its development at every stage. We chose to run a focus group as we wanted to explore what drives people to prioritise certain things and not others. This method allowed us to have a rich discussion around our priorities in a way that a survey would not provide.
We planned to meet in Birmingham, but as this was not possible due to Covid-19, we held three digital focus groups, with four panel members in each group instead.
We can now be more confident that our strategy plans reflect the experiences and thoughts of the people we work for. The panel members emphasised the need to properly tackle inequalities and challenged our thinking about different areas of our strategy including campaigning, service delivery and community areas.
The panel reminded our staff of the realities that people with mental health problems face, leading us to put these at the forefront of our work. This has contributed to the development of our three new strategic challenges and we are making a real commitment to target those who are in greatest need of Mind’s work.
“Being involved in the panel has allowed me to voice my views and have them listened to. Drawing upon our experiences as members empowers us to be catalysts for change. I think it is important for Mind to understand and use the perspectives of people with lived experience to inform its future strategic focus."
We learned how to successfully run a digital focus group on Zoom, and how to facilitate a session when you’re not all in the same room. Next time, we would definitely add more breaks. We only had three five minute breaks within the two and half hour calls, and this was not enough for participants to focus.
We would add in more interactive activities e.g. polls on Zoom, because discussion after discussion can be tiring. We would also make more space to be comfortable with silence and sit through awkward pauses, so that there is more time for participants to speak.
Those involved told us that they felt they had contributed to Mind’s future plans, and defining the future of mental healthcare in England and Wales. They found this hugely rewarding and empowering as people who care a lot about mental health and who have often not had the best experience of mental health services or been listened to. They also told us that they found out more about mental health as a result of hearing others’ experiences on the call and found this very interesting.
By the end of the year, participants will be able to say that they’ve advised on Mind’s strategic direction as a part of a group, providing them with great experience for their CVs. We paid the panel members for their engagement. This is a great way to show people that we really value them and want this to benefit them.
We prepared the panel members for the meeting with calls separately in advance to welcome them, then sent out activity packs to read in advance, so that they could familiarise themselves with the content and feel prepared for the kinds of questions that were going to be asked.
We offered digital support via calls separately with each person before and a practice trial Zoom call for those who were worried they didn’t know how to use Zoom. We asked exactly what support people might need and adjusted our plans based on this. For example, two panel members with Attention deficit hyperactivity disorder (ADHD) wanted their activity pack printed in certain colours that made it easier for them to focus on.
There was a designated wellbeing support person in the room who is mental health first aid trained, and we said that anyone could contact him on the Zoom chat, or via our email which was monitored throughout if anyone needed extra support.
"There were so many innovative ways that made the online advisory panel just as good, if not better, than if it was run face to face.Conversation is more to the point and focused, and you have more time to compose your answers and questions. As strange as it was, I wouldn’t have had it any other way."