Involving people with lived experience

In this guidance, a person with lived experience refers to ‘New Scots’ as defined in the New Scots Refugee Integration Strategy 2024 people living in Scotland who have been forcibly displaced or are making a claim that they have a well-founded fear of persecution.

The term ‘New Scots’ includes people who have been granted refugee status or another form of humanitarian protection, and their dependents; people seeking asylum and people seeking protection as a result of displacement, exploitation or political persecution; as well as those whose application for asylum has been refused, but who remain in Scotland. It also includes people who are or may become stateless and in need of international protection.

New Scots partners understand that there is not universal consensus around the term New Scots but the consultation has shown that there was agreement on the fact that it conveys a helpful message of inclusion to all who need safety in Scotland for as long as they need it.

Historically, New Scots have often been treated as passive recipients of policy decisions rather than active participants, resulting in tokenism and exclusion.

Recognising lived experience is therefore not only good practice but a matter of justice. People with first-hand experience of asylum, displacement and refugee systems bring unique knowledge and insight, helping to make services and policies more inclusive, responsive, and effective (Campbell & McKenzie, 2016), while also strengthening organisational legitimacy and accountability. Meaningful engagement requires a commitment to ethical and inclusive practice, fostering self-determination, respecting dignity, and recognising people with lived experience as experts in their own right (Global Refugee-led Network, 2019). At the same time, it is important to question our own assumptions about involvement, the language we use to define lived experience, and the narratives we centre, recognising that these choices shape both whose voices are heard and how engagement is experienced.

Drawing on the Meaningful Engagement of People with Lived Experience Toolkit (National Survivor Network, 2023), this guidance recognises three approaches:

Lived Experience-Informed: Engagement with a diverse community of people with lived experience, whose input shapes policies, services, and activities from design through evaluation. This requires awareness of power imbalances and vigilance against tokenism.

Lived Experience-Centred: Places the rights, dignity, strengths, and needs of people with lived experience at the heart of all efforts. Their voices are prioritised in decision-making, with collaboration aimed at transforming the conditions that perpetuate exclusion.

Lived Experience-Led: Positions people with lived experience in leadership roles, decision-making processes, and governance structures, recognising their expertise as fundamental to fairer systems and sustainable solutions.

These are clear principles and practical models to guide safe, meaningful, and sustainable participation.

All involvement of people with lived experience should follow these principles:

Clarity of Purpose – Be clear on why people are involved, what is expected, and how input will shape outcomes.

Inclusion and Accessibility – Anticipate and remove barriers such as childcare, travel, digital access, and language.

Recognition and Respect – Value expertise through fair compensation, training, and opportunities for growth.

Trauma-Informed and Culturally Safe – Avoid re-traumatisation, respect cultural context, and provide emotional support where needed.

Transparency and Accountability– Share feedback on how contributions influenced decisions.

Progression and Sustainability – Create pathways for leadership and embed participation in organisational practice.

Equity, Consent, and Safeguarding – Ensure power-sharing, voluntary participation, and safe processes.

Evaluation and Learning – Regularly review and adapt engagement based on feedback and impact.

Different levels of participation depend on skills, interests, and context. 

Levels of Participation 

•  Engagement/Inform: One-off interactions such as surveys, focus groups, or interviews. Participants are informed and provide insight but do not influence decisions directly.
• Consultation: Structured opportunities to review or comment on proposals, policies, or service design. Feedback is actively considered in organisational decisions.
• Involvement/Influence: Regular participation in advisory groups or committees where participants shape services, policy, or strategy.
• Co-Production/Co-Design: Equal partnership in designing, implementing, and evaluating services or policies. Decision-making responsibilities are shared.

Leadership/Empowerment: Participants hold decision-making authority, e.g., trustees, project leads, or advisory chairs. Leadership can include mentoring others,representing the organisation externally, or guiding strategic initiatives.

Practical Tip- Choosing the right model depends on purpose, resources, and participants’ aspirations. All roles should include support, feedback, and clarity on whether involvement is voluntary or paid. 

Effective lived experience engagement begins with careful planning. Practitioners should: 

• Conduct background work: Map existing knowledge, identify gaps, and avoid duplication with previous engagement activities.
• Draft a purpose statement: Develop a clear, concise statement of intent (1–2 lines) and set out terms of reference for the engagement. This ensures all participants and staff understand the objectives and scope.
• Define outcomes: Establish SMART outcomes – specific, measurable, achievable, relevant, and time-bound – to evaluate the success of engagement.
• Set timeframes: Allow a minimum of six weeks lead-in time to build trust, secure participation, and make necessary access arrangements.
• Integrate operationally: Ensure involvement activities are embedded in teamwork plans, budgets, and timelines, not treated as optional add-ons. 

It is good practice to regularly remind people that their expenses will be covered, so they do not feel they need to ask. Responsibility for ensuring these arrangements are in place, and that reimbursements are made promptly, should rest with the organisation or individuals leading the work.

All engagement must be designed to remove barriers and be accessible to all participants:

• Language access: Provide interpreters, translations, and materials in plain English or Easy Read formats where necessary.
• Travel and venue: Cover travel costs in advance and ensure venues are fully accessible, including physical access and transport links.
• Childcare and family considerations: Offer childcare provision or reimburse costs and schedule activities around participants’ family commitments.
• Digital inclusion: Provide devices, data, and technical support to enable participation in remote engagement.
• Hospitality: Ensure food is provided, taking account of cultural and dietary needs.

This guidance emphasises that participation should not create financial or practical barriers. Compensation is intended to acknowledge the expertise of people with lived experience and ensure that involvement does not negatively impact participants. It is good practice to cover costs related to participation barriers and provide appropriate compensation.

It is helpful to regularly remind people that their expenses will be covered, so they do not feel they need to ask. Responsibility for ensuring these arrangements are in place, and that reimbursements are made promptly, should rest with the organisation or individuals leading the work.

Current forms of compensation can include support for preparation meetings, training, professional development opportunities, and/or vouchers for main involvement activities.

People with lived experience are not a homogenous group. Organisations must not assume anyone speaks for others. Lived experience is diverse, and involvement must reflect this. Intersectionality must guide planning, with proactive steps to reduce barriers through Equality Impact Assessments (EQIAs) to inform planning. Representation must reflect the diversity of refugee communities. Engagement should consider diversity in gender, age, disability, LGBTQ+ identity, faith, legal status, experience of different protection routes and geographical representation.

Practical Tip: Avoid over-reliance on the same individuals to prevent burnout and ensure broad representation. Match participants to project goals.

Engagement with people with lived experience must prioritise safety, respect, and ethical practice.

All involvement should:

Confidentiality: Conduct Data Protection Impact Assessments (DPIAs) and anonymise data where possible.

Participant Control: Enable participants to review and approve their contributions.

Power-Sharing: Share facilitation, decision-making, and leadership responsibilities.

Safeguarding: Ensure informed consent, voluntary participation, and respect for privacy.

Risk Management: Anticipate and mitigate risks through clear safeguarding protocols, particularly for high-risk participants.

Meaningful engagement requires adequate resourcing and strong partnerships:

Resourcing: Allocate dedicated budgets for lived experience involvement at the planning stage.

Partnerships: Establish clear agreements covering roles, responsibilities, governance, data protection, and branding.

Capacity-Building: Invest in staff and participant training, peer mentoring, and communities of practice to strengthen skills and knowledge.

Time: ensure you are creating time within the planning process to involve people.

Monitoring, evaluation, and accountability (MEA) ensure engagement is effective, ethical, and continually improving:

Participant Feedback: Collect feedback after each activity to understand experiences, perspectives, and suggestions.

Impact Assessment: Evaluate the effect of participation on individuals and organisational outcomes.

Transparency: Communicate decision-making processes and outcomes clearly to all stakeholders.

Continuous Improvement: Regularly review and refine practices based on feedback and evaluation findings.

Monitoring should track levels of participation, participant satisfaction, and the influence of engagement on services, programmes, and outcomes. Evaluation supports continuous quality improvement (CQI), helping the organisation plan improvements, assess strengths and weaknesses, and ensure that data collection drives practice enhancement rather than simply fulfilling funding requirements.

Evaluation Process:

1. Develop measurable indicators reflecting engagement strengths and areas for growth.
2. Use structured instruments such as group discussion, surveys or checklists to collect data.
3. Conduct data analysis to identify trends, gaps, and opportunities.
4. Implement an action plan based on findings.
5. Conduct reassessment to track progress and update strategies

This suggested evaluation process can be adapted. It is important to use a range of methods to gather feedback, depending on the group’s membership and goals. Some groups may prefer to take part in more formal evaluation processes, while others may find informal approaches more appropriate and accessible. The key is to co-design feedback, decision-making, and group development processes with members so that they are meaningful, inclusive, and accessible to everyone involved.

Learning from existing models helps embed meaningful lived experience involvement.

1. Breaking Barriers’ Lived Experience Panels work in partnership with staff throughout the organisation, contributing to new and ongoing projects, events, and workshops along with shaping decision-making processes at every level. Their role can vary from strategic management and planning to front line service delivery.
2. The New Scots Core Group Advisers have a clear role description, and a structured remit in the New Scots Refugee Integration Strategy
3. Co-Production for Organisational Change: Refugee Action’s Experts by Experience programme demonstrates how training, leadership opportunities, and organisation-wide toolkits standardise co-production and embed lived experience across governance, strategy, and services.
4. Fair Compensation: A Guide by Experts by Experience, a guide developed by a group of campaigners with lived experience of the immigration system and published by PRAXIS and the NRPF network.