How to support and supervise Experts by Experience ethically

Experts by Experience are asked to bring personal knowledge into organisational work. That knowledge may come from difficult events, periods of illness, caring responsibilities, exclusion, treatment or contact with complex services.

Supporting the role ethically does not mean treating people as fragile or lowering expectations. It means designing the work carefully, being clear about responsibilities and recognising that lived experience should not be extracted without thought for the person contributing it.

The right arrangement will depend on whether someone is employed in an ongoing role, placed within an organisation or contributing to an individual assignment. The principles below apply across those differences, but the formal responsibilities should always be set out for the actual arrangement.

Start with a role, not a personal story

An organisation should know what it is asking the Expert by Experience to do. A role description or assignment brief should explain:

• the purpose of the work
• the tasks involved
• the experience relevant to it
• what the person is and is not responsible for
• who they will work with
• where decisions sit
• what information they can access
• any confidentiality requirements
• how concerns are raised
• what the work will produce

This moves the relationship away from tell us what happened to you and towards a contribution with a defined purpose. A personal account may form part of the work, but it should not be the whole role unless that has been discussed and agreed.

Do not expect one person to represent everyone

An Expert by Experience can speak from their own knowledge. They may also bring themes from listening, research or wider involvement, but they should not be treated as the voice of every patient, carer or community.

Supervision should help keep this distinction clear by asking which parts of a contribution come from direct experience, which have been heard from others and what information would be needed before making a wider claim.

Agree what disclosure is relevant

People should not feel that they must reveal the most private or distressing parts of their lives to prove their expertise. Before an activity, discuss what the person may want or need to share, who the audience will be and how the information may be recorded or repeated.

Consent is not a single question asked at recruitment. It needs to fit the particular use of a person's experience.

Prepare people for the setting

• the purpose and history of the project
• the people attending and their roles
• papers or materials to review
• what decisions have already been made
• what is open to influence
• the likely format and questions
• unfamiliar terms or governance processes
• what to do if the meeting changes direction
• who to contact with a practical or personal concern

Staff also need preparation. They should understand why the Expert by Experience is there, how the role fits with theirs and why disagreement should not be treated as a problem to manage away.

Ask about access rather than making assumptions

Two people with similar service experience may need very different things to take part. Discuss venue and physical access, online platforms, communication format, sensory environment, timing, breaks, advance information, alternative ways to contribute, travel or caring constraints and what helps the person take part in a difficult subject.

Give supervision a clear purpose

Supervision can cover current work, preparation, reflection, workload, practical arrangements, boundaries, confidentiality, learning and development, working relationships and escalation. It is not therapy, although a conversation may acknowledge the personal effect of the work.

In a placement, the organisation and employer must understand who manages day-to-day activity, who provides formal supervision and who deals with employment or conduct matters. Ambiguity leaves the Expert by Experience carrying the gap between two organisations.

Plan for work that may be personally difficult

Some projects are more likely to connect with distressing experiences. This does not mean excluding people from subjects relevant to them. It means discussing the work honestly and planning proportionate support before a person is visibly distressed.

• what subjects may arise
• whether participation is optional within parts of the activity
• who can pause or change the format
• whether a debrief would be useful
• how someone can step back from future activity
• what happens if a current risk or safeguarding issue is disclosed

Set boundaries around clinical, safeguarding and complaints matters

Experts by Experience may hear personal information or concerns. They need to know what they can keep confidential and what must be passed on. They should not be left to investigate a safeguarding concern, provide clinical advice or act as a substitute for a complaints team.

Make disagreement safe and useful

Lived experience involvement loses value if contributors learn that only reassuring views are welcome. Supervisors and managers should distinguish between respectful challenge and inappropriate conduct, and should address dismissive behaviour from staff, not only the conduct of the Expert by Experience.

Close the loop on contributions

Support continues after a meeting, visit or project activity. Experts by Experience should hear how their contribution was used where the arrangement allows, including agreed findings, changes made to a draft, responses to recommendations, questions needing further work or why a suggestion could not be taken forward.

Questions for organisations placing an Expert by Experience role

1. 1.Is the purpose and scope written clearly?
2. 2.Does the person's experience fit the work?
3. 3.Are employment, placement and day-to-day responsibilities understood?
4. 4.Have access, preparation and relevant checks been addressed?
5. 5.Is there a named supervisor and a regular route for contact?
6. 6.Are confidentiality, safeguarding and complaints boundaries clear?
7. 7.Can the person contribute a different view without being penalised for it?
8. 8.Is there a route for feedback in both directions?
9. 9.How will the organisation return to what the person contributes?
10. 10.What happens when the role, placement or assignment ends?