Words to describe lived experience work

Lived experience is the knowledge and understanding you get when you have personally lived through something.

For Mind, a person with lived experience is someone with personal experience of mental health problems. Or, people that have experienced marginalisation which may affect their mental health.

This may include lived experience of poverty, racial trauma, or other forms of prejudice or discrimination.

Mind wants to work with a diverse range of people with lived experience to fight for better mental health for all.

Indirect lived experience is close, second-hand lived experience. It can be related to:

• Mental distress, illness, or diagnosis experienced by your close friend, family member, carer, colleague, acquaintance, or other person
• Use of mental health services by your close friend, family member, carer, colleague, acquaintance, or other person

People using the knowledge and insights gained from their own lived experience to influence and take part in Mind’s activities and projects. This might also be referred to as involvement or engagement work.

An example of this work is influencing the way we  do research. People with lived experience of depression might help us decide how we should conduct research on the impact of depression. They might help us decide how to get people to take part.

Mind uses this term to describe how we develop and promote opportunities, so that a diverse range of people can influence and take part in our work.

Influence and participation recognises that people want to take part in lots of different ways. There is not a ‘one size fits all’ approach.

For example, Mind offers lots of opportunities to influence and take part in our work. This includes surveys, focus groups, co-design projects, advisory groups, and people with lived experience leading our work.

This means that people with lived experience help make decisions about our work. They help decide what work we prioritise, and how we should plan, deliver, and evaluate it.

An example of this is when people with lived experience are part of a Mind advisory group. Or, they might help to design a product or service.

Lived experience participation means people with lived experience take part in our work.

Examples of participation include:

• Sharing your story at an event
• Being part of a Mind campaign
• Co-delivering or leading training

Shaping our work means you inform what work we should do and what it should look like.

An example of this is helping to design our organisational strategy.

Co-design means people working together to design a product or service.

People will use other skills and experience in this work, as well as their lived experience.

An example of this is when staff and people with lived experience work together to create mental health awareness training.

Co-production happens when people who provide services, and people who use those services, work together as equal partners. They work together to design and deliver the services.

Co-production is different from co-design. In co-production, people with lived experience also help to deliver the service.

An example is when staff and people with lived experience work together to plan and deliver a peer support service.

A focus group is a small group of people brought together to talk about a topic, usually for research.

The purpose is to listen and gather information. It's a good way to find out how people feel or think about an issue, or to come up with possible solutions to problems.

An example is bringing a group of people together to find out more about their experiences of social prescribing.

This means working with an organisation to help develop or advise on their strategy.

A strategy sets out what the organisation's main work focus will be, and how they'll achieve it.

For example, Mind is currently focusing on:

• Working with young people
• Supporting people experiencing poverty
• Becoming an anti-racist organisation

Mind held workshops with people with lived experience to help develop our strategy in these areas.

This means working with an organisation to help develop or advise on their policy. A policy sets out guidelines about how the organisation will work.

For example, people with lived experience might help to develop a policy on how to involve people with mental health problems in an organisation's work.

In service design, people who provide services, and people who might use those services, work together.

Together, they decide what services should look like. It might involve carrying out research and developing and testing ideas.

For example, women who need a perinatal mental health service could work with service staff to:

• Carry out research on what people need from the service
• Develop a service to meet these needs
• Test and evaluate the service

A workshop is an interactive meeting or educational session. It will usually have a specific result or goal. People will work together in a small group to carry out an activity.

For example, staff and people with lived experience might work together to come up with ideas for a new resource.

An advisory group is a group of people who meet regularly and use their experiences, skills, and knowledge to give feedback and advice to an organisation.

The group won't normally make final decisions. They're more likely to give advice about decisions.

The group could include people with lived experience of mental health problems, or a combination of staff and people with lived experience.

For example, the group might advise on Mind’s response to a government issue. Mind currently runs an advisory group to help our campaign on the Mental Health Act.

A steering group is a group of people who use their experiences, skills, and knowledge of specific topics to make strategic decisions.

The people with lived experience have an equal say in the agenda, and what tasks the group do. 

The group could include people with lived experience of mental health problems, or a combination of staff and people with lived experience.

For example, a steering group involving people with lived experience and academics might decide what work Mind should do on physical activity and mental health.

This is a group of people who meet regularly to work on a specific task or project. They may bring specialist skills and expertise which is needed for the project.

The group could include people with lived experience of mental health problems or a combination of staff and people with lived experience.

For example, staff and people with lived experience might work together to develop a a new set of information resources about schizophrenia.

A lived experience advisor is someone who has experienced a mental health problem. They use their personal insight and understanding to make sure the work we do meets the needs of people with lived experience.

For example, people with lived experience might review a guide which helps workplaces to embed mentally healthy practices in their workplace.

Someone who bring their insight and understanding to a piece of work, as a result of having experienced a mental health problem.

They will also bring other specialised skills and experience which are needed for the role.

For example, people with lived experience who have skills in developing training might help us to create a workplace wellbeing training course.

This is when people with lived experience share decision-making to steer Mind’s work and lead projects.

For example, people with lived experience might work in a steering group for Mind. They'll use this influence to improve how projects are run.

Another example is PeerFest, which is fully organised and led by people with lived experience. 

Someone with lived experience of mental health problems who is working as part of a service design project.

They  may carry out tasks such as research, workshopping ideas, testing, and reviewing products or services.

For example, a person might carry out research in their community and bring this into the design process. They'll use this research to help create a service which meets the needs of that community.

A peer researcher is someone who uses their lived experience to direct the research process. They'll be given a brief by Mind and will decide how to plan and carry out the research. They'll report back on their findings.

For example, a person with lived experience might lead a piece of research on how to recruit more people from racialised communities into leadership roles.

A member of the public who takes part in activities for research or to evaluate services.

These activities recognise that people have lived experience which means they can contribute valuable insights.

A person who's used health or social care services because of illness or disability, who will then go on to share their experiences. They'll do this to help develop a service or run a project.

Presenting means speaking to a meeting or a group of people at an event, about a specific topic or issue.

Presenting may involve:

• Speaking from notes
• Doing a presentation, for example using PowerPoint
• Taking questions from people during or afterwards

Presentations may take place as part of meetings. The amount and type of people in the audience will be different for each event.

Facilitating means helping people in groups and meetings to work well together.

You might do this by leading a discussion and making sure everyone has a chance to share their views. Or, you might help organise the meeting (like setting up the a meeting room).

The person chairing a meeting is the person who leads the meeting. Chairing a meeting includes:

• Creating the meeting agenda
• Making sure everyone can contribute to the meeting
• Making sure it runs on time.

Chairing can happen in different ways. There might be:

• 1 chair per meeting
• Co-chairs who split up the responsibilities of chairing
• Co-chairs who are responsible for specific sections of the meeting