Glossary and examples

Expert by experience

An expert by experience (EbyE) is someone who uses their personal lived experience of using health, social care, or supported services - or of caring for someone who has - to help improve those services. 

Together Expert by Experience Network

The Together EbyE Network brings together individuals with lived experience and carers to ensure their voices are meaningfully included in shaping services. The network is committed to improving services, driving positive change and challenging stigma and discrimination.

Peer support worker

Peer support workers are people who use their lived experience of mental health problems to support others

Standard operating procedure (SOP)

A set of step-by-step instructions compiled by an organisation to help staff carry out routine operations

PROMs and PREMs

Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are used to assess the quality of healthcare experiences, focusing on patients

Consultation

Asking for people's views on ideas, plans, or options

Engagement

Listening carefully to understand people's experiences and perspectives

Co-design

Working together to shape ideas and develop plans, with people's input clearly reflected in the outcome

Co-production

Collaborating as equal partners from start to finish, sharing decisions and responsibility throughout the process.

Mental Health, Learning Disability and Autism (MHLDA) Inpatient Quality Transformation Programme

A major national initiative launched in early 2023 to fundamentally reshape inpatient mental health services in England

Best practice involvement examples

Secure services

In the Secure Directorate, there are many ways for service users and carers to influence services.

Each ward at Langdon Hospital holds a fortnightly patient forum, with patient representatives attending the monthly site-wide Patient Council. We also run a Family and Friends Steering Group, a Carer Peer Support Group and host open days every six months.

The Patient Council Chair and a carer representative attend inpatient governance meetings, helping escalate key topics and shape service development. 

Patients and carers also regularly take part in staff interviews and inductions.
We offer co-produced activity sessions each term, following recovery college principles. 

There are a number of peer support worker roles (paid and unpaid) across the directorate but mainly within the community services.

Recent successes include co-producing an updated inpatient takeaway food policy, revising patient and carer welcome booklets, and developing presentations for family and friends open days.

"Everything we talk about in the Patient Council is taken seriously. It's shared with managers and talked about in their meetings. We often see things differently from staff, and that's really important. It helps break down the 'us and them' feeling. When we work together, we can achieve so much more.

The Patient Council helps change how things are done. Sometimes staff say, 'I didn't think of that,' and it helps everyone understand each other better. Listening to both sides and working as a team makes a big difference.

When we make something happen together, it feels really good. It makes you want to keep going and do even more. The Patient Council doesn't just help patients and staff work better together-it also helps carers feel more involved.
In the future, I'd love to see the Patient Council lead a project that brings inpatient and community services closer together. It would be great to involve local people more and share the good things we're doing here." - Patient Council Chair

TALKWORKS

The TALKWORKS volunteer and expert by experience project is a vital component of the TALKWORKS service. It aims to improve access for hard-to-reach communities, enhance service reflexivity through co-production and provide career pathways within Devon Partnership NHS Trust and the wider NHS. The project also helps to improve service resilience, offer post-therapy involvement and support the provision of post-therapy support groups (facilitated by peer support staff).

As the project enters its second year, it focuses on individualised client support, where volunteers assist clients with everyday tasks. TALKWORKS experts by experience contribute valuable insights from their lived experiences - from supporting with the design of photo storyboards, to featuring in service videos promoting our care. The diverse team of volunteers, representing various demographics and geographic areas, actively participate in marketing events and service development, ensuring a wide range of perspectives and fostering inclusivity.