What is an Expert by Experience in health and social care?

An Expert by Experience uses knowledge gained as a patient, through accessing services or as a carer to contribute to health and social care work.

An Expert by Experience is someone who contributes knowledge gained through direct personal experience. In health and social care, that usually means experience as a patient, as someone who has accessed services, or as a carer.

The word expert does not suggest that one person knows everything about a condition, service or community. It recognises that direct experience creates a form of knowledge that is different from clinical, professional, academic or operational knowledge.

That knowledge can help an organisation see how a policy, environment, conversation or service is experienced in practice. It can also draw attention to questions that would be easy to miss from within the organisation.

What makes lived experience a form of expertise?

People using health and social care services notice things that may not be visible in a procedure or performance report. They experience how information is explained, whether a space feels safe, what it is like to wait, how choices are offered and what happens when different parts of a service do not join up.

Carers can bring another important perspective. They may see changes over time, support communication, help someone navigate services and understand what happens between appointments or outside a care setting.

An Expert by Experience draws on what they have encountered and learned. In some roles, they may also listen to patient and/or carer feedback, review information from several sources, identify themes or work alongside people with different experiences.

The contribution is most useful when the purpose is clear. Asking someone to share their story is not the same as giving them a defined role in a service review, research project or decision-making process.

What can an Expert by Experience do?

The role depends on the work. Experts by Experience may:

• visit a service and contribute to a review or assessment
• listen to and help gather patient and/or carer feedback
• sit on an advisory board, steering group or project group
• review policies, pathways, training materials or public information
• contribute to research design, interviews, focus groups and analysis
• test products, services, resources or digital processes
• help plan or co-deliver training
• contribute to a panel, event, film or facilitated discussion
• work in an agreed role within an organisation

These activities require different things. Someone who is well suited to reviewing written information may not want to speak at a large event. Someone with relevant experience of one setting may not be right for a project about another. Good involvement starts by defining the work, then considering what experience and way of contributing fit it.

Is an Expert by Experience the same as a patient representative?

The terms can overlap, but they are not always used in the same way. Patient representative can suggest that a person is expected to speak for a wider group. An Expert by Experience should not be assumed to represent every patient or carer. They bring their own knowledge and may be able to identify wider themes, particularly when they have listened to others, but their personal experience remains their own.

This distinction matters. It allows people to contribute honestly without being asked to make claims on behalf of communities they do not represent.

Do Experts by Experience need professional qualifications?

Not simply because they are Experts by Experience. Their starting point is direct experience, not a clinical or academic qualification. Some assignments may need additional skills, such as interviewing, chairing a discussion, analysing information or contributing to a particular governance process. Those requirements should be connected to the actual role rather than used to make lived experience sound like a conventional professional credential.

Professional and lived experience knowledge can sit alongside each other. One does not need to imitate or replace the other.

Does someone have to tell their full personal story?

No. People should be able to decide what they share within the agreed purpose of the work. Some personal detail may be relevant, but useful involvement does not depend on disclosing the most difficult parts of someone's life. A clear brief helps the contributor understand what the organisation needs to learn and which parts of their experience may be helpful.

It is also important to agree boundaries, confidentiality and routes for support before the activity begins. This is particularly relevant when the subject may be distressing or when other people's personal information could arise.

How is the role used in health and social care?

There is no single model used by every organisation. The Care Quality Commission, for example, describes Experts by Experience as people with recent personal experience of using or caring for someone who uses health and social care services. It uses their knowledge in activities including evidence gathering, conversations, document review, design work and events.

That is one public example of the role. Other organisations use Experts by Experience in research, service design, workforce activity, quality improvement, education and governance. The responsibilities and boundaries should always be set for the particular work rather than assumed from the title alone.

The CQC Experts by Experience programme

The Care Quality Commission (CQC) regulates health and social care services in England. It runs its own Experts by Experience programme.

To take part, a person needs personal experience from the last eight years of using, or caring for someone who uses, health, mental health or social care services that CQC regulates.

During CQC assessments, Experts by Experience talk with people who use a service and with their families and friends. For services in the community, this can be by phone or video call. CQC notes that people often find it easier to talk to someone with similar lived experience. Experts by Experience also make their own observations during the assessment.

CQC involves Experts by Experience in other work too:

• helping to design how CQC works
• taking part in recruiting senior staff
• reviewing documents
• speaking at events across England

CQC looks for many kinds of experience. Its list includes people with experience of mental health services or of detention under the Mental Health Act, people with a learning disability, autistic people, people living with dementia, people who have used maternity services and family carers.

CQC works with a contracted partner organisation to recruit and support its Experts by Experience. To find out how to apply, see Experts by Experience on the CQC website (opens in a new tab).

LENs is independent of CQC. It is not part of the CQC programme and does not recruit for it.

Experts by Experience in the NHS

There is no single NHS job called Expert by Experience. NHS organisations use the title, and others like it, in different ways.

NHS integrated care boards and NHS trusts in England have a legal duty to involve the public in planning services and in decisions about them. NHS England explains how in its statutory guidance, Working in partnership with people and communities (opens in a new tab). Experts by Experience are one way to bring lived experience into that work.

One clear NHS example is the Care (Education) and Treatment Review, often shortened to C(E)TR. It looks at the care of autistic people and people with a learning disability who are in a mental health hospital, or at risk of going into one.

NHS England says every C(E)TR panel must include a chair, an independent clinical expert and an independent Expert by Experience. Here, the Expert by Experience is someone with relevant lived experience, or a close family member of someone who has it. NHS England sets this out in its C(E)TR role descriptors (opens in a new tab).

Other NHS roles draw on lived experience under different names. You may see patient and public voice partners, patient safety partners or lived experience partners. The titles vary, so read the role description to see what the work involves.

Experts by Experience in mental health services

People with experience of mental health services, or of caring for someone who uses them, can help a service see how its care feels from the inside. That may include experience of a hospital stay, of detention under the Mental Health Act or of secure care.

NHS England's Culture of care standards for mental health inpatient services (opens in a new tab) put lived experience first. The first of their 12 core commitments is to value lived experience, including in paid roles, at every level: design, delivery, governance and oversight.

In mental health services, Experts by Experience may:

• visit wards and community services and talk with patients and carers
• review care, policies and patient information
• join recruitment panels, steering groups and boards
• help to plan and deliver staff training
• take part in reviews such as C(E)TRs

Having been in hospital, including in secure care, should not rule someone out on its own. Talk through timing, setting and support with the person before agreeing any work. Some roles also have rules on conflicts of interest. C(E)TR panel members, for example, must declare it if they have been an inpatient at the hospital being reviewed.

Some subjects in mental health work can be distressing. Agree boundaries, preparation and support before the work starts, and make sure the person knows who to contact if they need help.

Expert by Experience, peer support worker and other lived experience roles

These roles all draw on lived experience, but they are different jobs. The terms overlap, and organisations use them in different ways.

A peer support worker uses their own experience to support other people directly. The NHS Health Careers page on peer support workers (opens in a new tab) describes them as people who use their lived experience of mental health problems to support others. They work one to one and in groups, as part of a person's care team.

NHS England's Culture of care standards say peer workers on inpatient wards do not take part in restraint or other coercive practices, so that the peer role is protected.

An Expert by Experience usually uses their experience to help an organisation understand and improve something: a service, a policy, a piece of training or a decision. They may listen to patients and carers as part of that work, but they do not usually give ongoing support to one person.

Lived experience roles are the widest group. The term covers any role where lived experience is part of what the person brings. Titles include lived experience lead, patient safety partner, patient and public voice partner and involvement worker. Some are paid jobs. Others are voluntary, sometimes with expenses or involvement payments.

Whatever the title, read the role description. It should tell you what you will do, who you will work with, how you will be paid and what support you will get.

How to become an Expert by Experience

You do not need qualifications. What counts is your lived experience as a patient, as someone who uses services, or as a carer. Some roles also ask for extra skills, and a good role description will say so.

1. 11. Think about the experience you could bring and the services it relates to, such as mental health, learning disability, autism, social care or caring for someone.
2. 22. Look for roles. Expert by Experience work is offered by NHS organisations, councils, regulators, charities and independent organisations such as LENs.
3. 33. Read each role description. Check what the work involves, how often it happens, how it is paid and what support is offered.
4. 44. Expect some checks. Work that involves visiting services usually needs references and a DBS (criminal record) check.
5. 55. If you get benefits, check how paid work could affect them before you start. Turn2us has a free benefits calculator, or you can ask a benefits adviser.

Becoming an Expert by Experience with LENs

LENs works with Experts by Experience across health and social care. The work is paid. You are paid for every piece of work, at a rate agreed with you before you start. Pay goes through payroll and includes holiday pay, and agreed travel and expenses are paid too.

Carers are welcome to apply, and so are people who have stayed in hospital, including in secure care. Applying does not promise you work. Work depends on the projects LENs has and the experience each one needs.

To find out more and apply, see Join LENs as an Expert by Experience.

What does a well-structured role look like?

A useful starting point is to answer six questions:

1. 11. What is the organisation trying to understand, decide or improve?
2. 22. Why is lived experience relevant to that question?
3. 33. What will the Expert by Experience be asked to do?
4. 44. What information, preparation and support will they need?
5. 55. How will their contribution be recorded and considered?
6. 66. What will happen after the activity?

These questions protect the value of the role. They also reduce the risk that someone is invited late, asked to speak without context or left unsure about whether their contribution went anywhere.