How Experts by Experience contribute to service review and improvement

Service review often draws on policies, records, performance measures, incidents, complaints and professional observation. Each source matters, but none gives the whole picture of what it is like to receive care or support.

Experts by Experience can add that perspective. They may notice how a service communicates, how choices are experienced, whether the environment supports dignity, and where the written process differs from everyday experience. They can also help patients and/or carers speak about things they may not raise through a formal survey or complaint.

Their contribution should sit alongside other forms of evidence. It does not replace clinical review, regulatory inspection, safeguarding, complaints or organisational governance.

Before a service visit or review

Useful involvement begins before anyone arrives at the service. The organisation and Expert by Experience team need a shared understanding of:

• the purpose of the review
• the service, pathway or setting included
• the questions the organisation needs to answer
• which patient and/or carer perspectives are relevant
• what information can be accessed
• how people will be invited to contribute
• consent, confidentiality and access arrangements
• how concerns will be handled
• what the review will produce

Preparation gives Experts by Experience enough context without scripting the answers they are expected to find. It also helps staff understand the role and reduces the risk that the activity is mistaken for a regulatory inspection.

Seeing the service from another position

Staff know their service from inside its processes. An Expert by Experience can approach it from the position of someone receiving care, trying to find information, entering the environment or relying on a pathway to work.

• how easy it is to understand what will happen
• whether people know how to ask questions or raise a concern
• privacy, dignity and the feel of the environment
• how choices and rights are explained
• whether communication works for different needs
• what patients and carers say about transitions and continuity
• whether the experience described by people matches the intended service

Listening to patient and/or carer feedback

People may speak differently with someone who has relevant lived experience. They may feel that less explanation is needed, or that the person listening will understand why a detail matters. Shared experience can help create a conversation, but it should not be assumed.

Feedback might come through one-to-one conversations, a small group, observation, a written route or a mix of approaches. People should understand why feedback is being gathered, how it will be used and any limits to confidentiality.

Comparing intended practice with lived experience

Policies and service descriptions show what should happen. Lived experience can help test how that intention is reaching people. A review can explore whether patients understand the plan, recognise their own priorities in it and know when it will be reviewed.

Where there is a gap, the contribution can help the organisation ask why. The answer may involve communication, environment, timing, staffing, access or a wider pathway. Findings should be described carefully and not stretched beyond the evidence gathered.

Identifying themes without losing individual experience

A single account can reveal an important issue, but it does not automatically show how common that issue is. Equally, a recurring theme should not make distinctive or serious experiences disappear.

• experiences raised by several people
• individual examples that illustrate a theme
• significant concerns that need a separate route
• differences between patient and carer perspectives
• positive practice people want the service to retain
• questions that could not be answered through the available information

Turning findings into practical recommendations

Recommendations are most useful when they connect clearly with what was heard and sit within the scope of the review. They might address information and communication, access and reasonable adjustments, privacy, dignity, the environment, feedback, transitions, carer involvement or subjects that need further investigation.

The organisation remains responsible for deciding and delivering action within its clinical, operational and governance duties.

Following themes across time

One visit provides a view at a particular point. A regular Expert by Experience programme can show whether themes recur, whether new issues emerge and whether changes are visible in later feedback. The purpose is not to turn lived experience into a league table. It is to give the organisation a consistent way to see and consider what people are experiencing.

Keeping the role clear

A lived experience service review is not a Care Quality Commission or other regulatory inspection, a substitute for clinical audit, a route for taking over safeguarding or complaints responsibilities, proof that every patient or carer has the same experience, or an endorsement of the service.

Questions to ask when planning the work

1. 1.What decision or improvement work will the findings inform?
2. 2.Do we need patient experience, carer experience or both?
3. 3.Which services and questions are in scope?
4. 4.How will people be invited and supported to give feedback?
5. 5.Who is responsible for urgent concerns or safeguarding matters?
6. 6.What will the report distinguish and what will it not claim?
7. 7.Who will consider the recommendations?
8. 8.How will the organisation follow up?