Skip to main content
Donate
Hide this page

Lived Experience Group Ethical Framework

Purpose

This Ethical Framework sets out the principles that guide how the Marie Collins Foundation (MCF) works alongside members of the Lived Experience Group (LEG).

The purpose of this framework is to ensure that lived experience is engaged in a way that is ethical, safe, meaningful and empowering, while recognising the expertise, autonomy and wellbeing of LEG members.

This framework sits alongside the LEG Terms of Reference, Handbook, Code of Conduct and associated MCF policies and procedures. It is intended to guide both day-to-day practice and decision-making where situations arise that are not explicitly covered elsewhere.

Two women sitting outdoors talking

Out Commitment

MCF believes that victims and survivors are experts in their own experiences.

Lived experience should not simply be heard; it should meaningfully influence the work we undertake and the decisions we make.

We recognise that sharing lived experience can involve emotional labour and vulnerability. We therefore commit to working in ways that minimise the risk of harm, reduce barriers to participation and create opportunities that are safe, inclusive and empowering.

Ethical Principles

Principle 1: Do No Further Harm

MCF's overarching approach is guided by the principle that victims and survivors have the right to suffer no further harm. We will:

  • consider potential risks and impacts before asking members to engage in activities
  • take steps to minimise emotional, psychological and practical harm
  • ensure safeguarding procedures are followed where concerns arise
  • recognise signs of distress and respond appropriately
  • avoid placing members in situations that create avoidable risk

We recognise that avoiding harm does not necessarily mean avoiding difficult conversations; rather, it means ensuring appropriate support, choice and preparation are in place.

Principle 2: Participation Must Be Voluntary

Participation in LEG activities is entirely voluntary. Members:

  • are under no obligation to participate in any activity
  • may decline opportunities without explanation
  • may withdraw from a project at any point
  • may pause or end their involvement with LEG at any time

We recognise that capacity and wellbeing change over time and that participation may vary accordingly.

Principle 3: Lived Experience Is Expertise

MCF recognises that lived experience is a form of expertise. We will:

  • value lived experience alongside professional and academic expertise
  • ensure members are engaged as contributors rather than token representatives
  • recognise the time, knowledge and emotional labour involved
  • reimburse members appropriately for agreed activities

Members are not expected to educate others through disclosure of personal experiences unless they wish to do so.

Principle 4: Safety and Wellbeing Are Paramount

The wellbeing of members is central to how LEG operates. We will:

  • provide regular opportunities for wellbeing discussions and support
  • identify barriers to participation and work to reduce them
  • offer training, development and appropriate support
  • recognise that advocacy work may have emotional impacts
  • create opportunities for members to raise concerns safely

We recognise that wellbeing needs may change and that support should be flexible and responsive.

Principle 5: Choice, Control and Boundaries

Members should retain control over how they participate. MCF will respect:

  • decisions about anonymity
  • decisions around what experiences members wish or do not wish to discuss
  • preferences around communication and participation
  • personal boundaries and support needs

Members should never feel pressured to share personal information beyond what they feel comfortable sharing.

Principle 6: Inclusion, Equity and Accessibility

MCF recognises that experiences of TACSA are diverse and that some individuals face additional barriers to participation. We will:

  • actively seek a diversity of voices and experiences
  • identify and reduce barriers to participation
  • make reasonable adjustments where required
  • consider accessibility in all activities
  • create environments where all members are treated with dignity and respect

Principle 7: Confidentiality and Trust

Trust is fundamental to effective lived experience work. MCF will:

  • manage personal information securely
  • clearly explain how information will be used
  • seek consent before sharing identifying information
  • maintain confidentiality wherever possible

Members are expected to respect the confidentiality and privacy of others.

Confidentiality may only be breached where safeguarding concerns or legal obligations require this.

Principle 8: Transparency and Shared Decision-Making

MCF will work openly and honestly with members. We will:

  • provide clear information about activities and expectations
  • explain intended outcomes and timescales
  • be transparent about how lived experience input will be used
  • communicate where recommendations cannot be implemented and explain why

We recognise that asking for input creates a responsibility to close feedback loops and demonstrate impact.

Principle 9: Accountability and Reflection

Ethical engagement requires ongoing reflection and learning. MCF will:

  • regularly review how LEG operates
  • seek feedback from members
  • identify and address unintended harms
  • adapt our approach as learning develops

Ethical practice is an ongoing process rather than a fixed set of rules.

Applying this Framework

This framework should inform:

  • recruitment and induction
  • project planning
  • external partnerships
  • research activity
  • media work
  • events and speaking opportunities
  • communications and campaigning
  • support arrangements

Where uncertainty exists, staff should ask:

  1. Does this create avoidable harm?
  2. Does the member have meaningful choice and control?
  3. Are we valuing expertise rather than extracting experience?
  4. Are appropriate supports in place?
  5. Are we being transparent about purpose and impact?

If the answer to any of these questions is unclear, the activity should be reviewed before proceeding.

People collaboratingat a meeting

Review

This framework will be reviewed annually alongside wider LEG policies and procedures and informed by feedback from LEG members and learning from practice.

Keep in Touch