People with lived experience play an important role in shaping and developing services, their experiences and ideas help us to develop tailored services that meet the needs and challenges people struggle with every day. This can be achieved in many different ways. Services that are already operating can involve current and past service users by sending out surveys and holding discussion groups to better understand people's experiences of using the service and what they would like to see changed. Many local Minds have gone a step further and support service based steering groups that ensure people have the opportunity to share decision making with the organisation in order to guide the development of the service.
It is essential people with lived experience influence the development of new services, this will ensure the service meets the needs of the community is will serve. Service design is a methodology that helps you explore what the needs are with potential users of the service and staff that may work there. This method has many benefits for organisations and individuals; its ethos puts people with lived experience at the heart of design and delivery and is closely aligned with co-production.
Also it is one of the most powerful ways to maximise the impact of campaigns, help them resonate with the public and give credibility to your message is to involve people with lived experience in the campaign. This should start at the earliest opportunity with people helping you understand the focus of the campaign, exploring the issues and defining what needs to change. There should also be opportunities for people to be involved in the delivery, Mind and Time To Change did this in many ways including case studies, photographs, becoming a 'face' of the campaign (see election campaign) as well as speaking at parliamentary events and attending conferences. A steering group is a good way to ensure the campaign stays on track and ensures people with lived experience are able to contribute to decisions relating as the campaign progresses.
At Newport Mind, young people are involved in all aspects of running the services provided. They hold regular steering group meetings that bring to light many issues; during one meeting, it became evident that young people often found coming to new places and meeting people for the first time a daunting experience that can trigger anxiety.
So, some of the young people made short films aimed at new service users, which were made available online for new users to watch before taking part in an activity or going to a new place for the first time, to prepare them for what to expect and minimise their anxiety.
You can watch one of these videos here.
Terry explains how his insights from having mental health problems have contributed to various services he has worked within. He says that one of the main benefits that he has had through voluntary positions is becoming proud of having a mental health issue and taking the shame away.
At Solent Mind, one of the organisation's most successful projects that has been led by people with lived experience is a peer support programme called Heads Up. It involves people visiting local secondary schools to talk about mental health, challenge discrimination and set up buddying schemes.
The success of Heads Up demonstrates the wider social and educational benefits of influence and participation and the positive impact on local and national-run services.
"It's why we do what we do. If we're going to do this stuff, why not do it with the people who are our raison d'être. It's not just about 'consultation'; it's a living, breathing process."