Commissions and commissioners: final report

6. Lived experience and commissioners

Introduction

This chapter explores learning about how commissions and commissioners work with and involve people with lived experience. It draws on evidence from a brief literature review, and interviews with commissions and commissioners in Scotland, Northern Ireland and Wales.

Ways of including lived experience

Connecting with people with lived experience is a key role for most commissions and commissioners. The way in which this is done varies.

In some cases, individual commissioners bring strong lived experience themselves. For example, the former UK wide Victim's Commissioner brought lived experience through the murder of her husband, which led to her significant involvement in campaigning activity.^[31] In other cases, commissioners bring expertise in the subject matter, for example running a prominent organisation or service in their field.

Most commissions and commissioners have clear plans and strategies for involving a wide range of people with lived experience, regardless of the personal experience of commissioners. This includes:

• ensuring membership of the Board and/ or other key decision making groups for people with lived experience
• creating lived experience panels or groups to inform and influence the decisions of commissions and commissioners
• networks of lived experience advisors, champions or human rights defenders
• ongoing engagement through interviews, focus groups, panels and national events.

Perceptions on including lived experience

The commissions and commissioners involved in this research took different approaches to including lived experience within their work.

Some said that participation and including people with lived experience was central and core to their work.

"Engagement is a vital part of our work… For me, my boss is the (people with lived experience)." Interviewee

These commissions were constantly evolving their practice in this matter, and strongly focused on developing and using best practice in their engagement with people with lived experience. Approaches used included:

• employing participation specialists to develop best practice in engaging with people with lived experience
• ensuring that all members of staff across the team live the values of working directly with people with lived experience to make sure their voices and views are heard in all their work
• paying people with lived experience for their time, particularly if they are doing the work that a professional might do (for example being involved in recruitment)

• co-design and co-production of principles for projects and approaches
• peer review of the commissioner's work by people with lived experience

• people with lived experience being directly involved in investigations
• people with lived experience being involved in the governance of the organisation including audit and recruitment
• outreach work with community groups, forums and other groups of people with lived experience where they meet.

These organisations highlighted that ensuring lived experience was embedded throughout the organisation was resource intensive, but recognised as very important across the organisation.

"We are constantly immersed in what people (with lived experience) are saying and what matters to them. That's really resource intensive but it's absolutely fundamental to the work that we do." Interviewee

Through involving people with lived experience, some interviewees felt that they were more in tune with issues on the ground, and more likely to hear from the groups they worked with.

"People with lived experience and carers, people that are actually walking in the shoes of those that we work alongside will perhaps on occasion be more willing to hear from those that have walked in their shoes rather than those with the professional badge on." Interviewee

Example: Human rights defenders

The Children and Young People's Commissioner Scotland must encourage children and young people to be involved in his work, and must have a strategy around involving children and young people^[32]. There is a team of 40 young advisors, aged 14 to 17. The team acts as human rights defenders and work on three themes:

• A mental health group – informing and leading a new investigation into children and young people's mental health.
• A governance group – informing how the Commissioner spends money, what work it does and who it hires.
• A European Network of Young Advisors group.

The Commission works to ensure that lived experience is embedded across the organisation, across all teams.

Example: Engagement strategy

The Mental Welfare Commission for Scotland has an engagement and participation strategy^[33], which sets out how it will involve people who use services and carers. The Commission has a legal requirement to have a person with lived experience and a carer on the Board^[34]. A service user is also included on all executive appointment panels. The Commission has an Advisory Committee including members from 40 key national stakeholder organisations, including lived experience and carer organisations.

The Commission has a team of four people with lived experience, covering autism, learning disability, carers and mental ill health, who work within the engagement and participation team. They are involved across the Commission's work, including identifying and verifying issues that feed into decision making about priorities; undertaking preparatory work on themes and scoping work; and feeding back on issues emerging at local level.

The team also takes part in investigations and helps to shape the questions explored during visits and investigations and feed into decision making about priorities based on their work and intelligence gathered.

"It has brought that part of it to life I think for us as a commission."

The Commission also gathers lived experience input on an ongoing basis through meeting people with lived experience and carers groups on key topics as it undertakes its work.

All of the interviewees said that they talked to people with lived experience who were affected by issues they were exploring – for example through projects, investigations or inquiries.

A few commissioners highlighted that their work was very broad, so they often spoke to third sector organisations to hear their views, and through this hear the views of their members with lived experience.

A few highlighted that they were on a journey around involving people with lived experience, with a focus on ensuring that people's voices are heard from very early stages – informing priorities and decision making, rather than giving their experience on particular topics once these have been decided. Interviewees highlighted that this required time, resources and engagement activity to ensure a wide range of people have the opportunity to have their voice heard.

"It requires time, relationships and trust." Interviewee