The Shared Learning Group on Involvement aims to encourage shared learning about the involvement of people with lived experience (also called service users, patients, carers and other terms) between charities working in the UK. We meet every two months in central London, or online. At meetings we discuss topics that have been identified as a priority by members. There is also always time for members to raise issues that they would like help with, and to get some input from other members about these.
We have a sister group which focuses on involvement in research. This group (called the Charities Research Involvement Group) meets every three months in central London, or online.
Members of both groups have access to the password protected area of this website and can also attend training events and workshops that are organised by the Group.
We are funded through membership fees.
What is involvement?
‘Involvement’ covers a range of activities, from consulting people with lived experience about their views or wishes, through to working in partnership with them to develop projects or services (often referred to as co-production), right through to people with lived experience leading projects, services or organisations.
When we talk about involvement, we mean the active involvement of people with lived experience in a charity, not their passive involvement as recipients of services or information. Involving is often described as doing things with or by people, rather than for or to them. Some organisations use the term ‘service user involvement, ‘participation’, ‘patient and public involvement’, or PPI.
We use the term ‘people with lived experience‘ to describe people who use (wish to use, or have used) health and/or social care services. We do not mean all users of an organisation’s services, as this may include, for example, health professionals. Some organisations prefer the terms ‘service users’, ‘patients’, ‘public’, or ‘people affected by…’
We use the term ‘carer’ to cover family members, partners or friends who have some responsibility for caring for someone who uses health or social care services. We do not mean professional carers, such as home helps or personal assistants, for whom caring is a paid job.
How are people with lived experience involved in the work of our member organisations?
People with lived experience are involved in a wide variety of activities. These include:
- Campaigning – prioritising which campaigns an organisation will undertake, lobbying and campaigning at local and national levels
- Complaints and comments – developing and reviewing comments and complaints procedures, making comments and complaints
- Conferences and events – planning, speaking at and taking part in conferences and events for staff, people with lived experience and other stakeholders
- Fundraising – deciding the direction of and being involved in the implementation of fundraising
- Governance – through acting as trustees, or on regional or national steering groups and reference groups
- Impact – capturing the impart of a particular activity or deciding how to capture the impact of involvement across a range of activities
- Involvement – determining how to take forward involvement in an organisation, running consultations and involvement events
- Media – speaking to the media, public speaking, writing testimonials.
- Promoting diversity – making links with and involving people from communities that may be marginalised
- Publications – writing, commenting on, editing and disseminating publications. This includes paper based publications as well as websites, videos and DVDs.
- PR and marketing – decision making about how best to promote the work of the organisation
- Recruitment and selection – recruiting new members of staff and being involved in induction training for new staff
- Research – deciding what research will be funded, overseeing the development of a project and disseminating the results, undertaking research, as well as developing and reviewing research strategy for an organisation.
- Strategy, policy and planning – developing or reviewing organisational strategies, plans and policies on a range of topics. Involvement informs our organisations’ responses to statutory and government-led consultations.
- Support – running self help and support groups, taking helpline calls, determining the direction of a helpline’s work
- Training – training staff, people with lived experience, volunteers, other stakeholders
Our members also support and promote the involvement of people with lived experience in NHS and social care services.