External resources

Guides, reports and toolkits

• Knowledge is Power – Community-led action research toolkit: Community-led action research is where the community decides on the issue to be researched, designs and carries out the research, and makes use of the results. This toolkit outlines what community-led action research looks like, how it works, how to deliver it, and how to use it to take action.
• National Standards for Community Engagement: The Standards are good-practice principles designed to improve and guide the process of community engagement, helping to build and sustain relationships between public services and community groups, and take action on the needs or issues that communities experience. The Standards were developed by the Scottish Community Development Centre, who host a range of useful resources to support people engaging with communities.
• WHO framework for meaningful engagement with lived experience: This framework shares understanding, knowledge and action on meaningful engagement and related participatory approaches from an evolving evidence base.
• Planning with People: community engagement and participation guidance: This guidance sets out the responsibilities of Integration Joint Boards, NHS boards and local authorities to involve community engagement in the planning and consideration of changes to health and social care services, and to ensure people are involved meaningfully.
• Public Health Scotland have published two leaflets, ‘Why are you asked for equalities data?’ and ‘Why do we collect equalities data?’, developed for staff and for healthcare service users. These will hopefully provide a better understanding of why they ask for it and what they do with the personal information.
• Understanding the experience of growing up with a chronic illness, how it impacts different areas of children and young people’s lives and how this changes over life stages, means seeing the bigger picture. Children and young people often share that they feel like their experiences are split up into different ‘slices’ that are separated out – physical health, mental health, education, family and friendships. Similarly, different ages and stages are looked at in isolation. Over a series of creative workshops Young Voices volunteers, came together to create something to help adults and professionals to see the ‘whole picture’. It was also important for children and young people to see their experiences growing up represented. This resource, published by Teapot Trust, documents thoughts, feelings, experiences, and reflections of growing up with chronic illness.
• The Co-production Guide aims to help users to carry out co-production in a more meaningful way and to embed co-production processes in their work. It identifies what co-production is and what it looks like in different contexts.
• The Homeless Network Scotland created a video as part of research they were involved in with University of Glasgow. The research focused on developing interventions to address missingness – where people repeatedly miss appointments – in primary healthcare. It aims to develop an understanding of missingness from service user, professional and policy perspectives to produce a suite of interventions to test in a future study. You can watch the video here.

Networks

• The Community of Practice – Lived Experience is facilitated by the ALLIANCE, but is a cross-sector network of individuals and professionals involved in lived experience. The group meets quarterly to provide a space to connect, and share learning, challenges and ideas on meaningfully involving lived experience across all areas of policy and service development.
• The Scottish Co-production Network is a way for people to share ideas and learning about co-production: a way for those who run public services and those who use them, to come together to make the most their own skills and ideas to improve how services work. The Network hosts learning events where people can share their learning and experiences, publishes materials and resources to support good practice, and promotes the sharing of co-production approaches across Scotland.
• The Personal Outcomes Network is a national cross-sector group with membership from across health, social care, education and housing. Members work in a wide range of roles but share a common passion for developing and implementing personal outcomes approaches locally and nationally. The Network is an open group, which holds quarterly meetings and aims to offer a safe place for reflection and sharing of practice through stories, learning, resources and evidence.

Have you found any useful resources that have supported your lived experience work?

If so, please feel free to suggest them for inclusion on this page by emailing rachel.cairns@alliance-scotland.org.uk.