Lived Experience networks round up 2023

An update of the development and progress of the ALLIANCE Lived Experience networks.

Over the last year, the Heart Disease Network has continued to work closely with Public Health Scotland to develop their Scottish Cardiac Audit Programme (SCAP), and with Scottish Government and clinical teams to influence six different cardiovascular disease pathways. These included contributions to the heart rhythm pathway, an Inherited Cardiac Disease pathway, and a coronary heart disease pathway for people who present at A&E with chest pain. We have also taken forward planning with the Scottish Government to conduct engagement in early 2024 for the Sudden Cardiac Death (SCD) pathway, as well as engagement sessions focused on improving NHS Inform pages for cardiovascular disease risk factors and prevention.

The ALLIANCE also continue to host regular evening meetings to build collaboration within the Heart Disease Network and were happy to join a meeting organised by British Heart Foundation between the Scottish network and their Welsh counterparts to discuss their experiences. It was fantastic to hear that one of the main outcomes people are experiencing as part of the network is confidence and empowerment.

The Long Covid Network was set up in spring 2022, and since then we have worked with Asthma + Lung UK, Chest Heart & Stroke Scotland, and National Services Scotland (NSS) stakeholders to expand representation for people affected by Long Covid in Scotland, and inform the design, development, and implementation of Long Covid services at local and national level across Scotland. In 2023, the network has supported a range of work, including developing NHS Inform pages on how to communicate to others about living with Long Covid, as well as continuing the work the on the Long Covid Self Management Workbook. Network members have also had the opportunity to join a capacity building session on mental health and wellbeing. Working with NSS and network members, the ALLIANCE is conducting a research and engagement project on people living with Long Covid who have disengaged from services. This project includes a national online survey and multiple focus groups, to gather evidence which will be shared with NSS and on the ALLIANCE website in January of 2024.

We have continued to develop our Community of Practice for Lived Experience, following its creation in 2022. This community brings together a diverse network of people and organisations to share learning, good practice, and ideas with regards to engaging with the voice of lived experience. Over the past year, the group has identified and developed a range of priorities, including capacity building for the network on topics such as emotional support for participants; relationship building; managing difficult conversations; and monitoring and evaluation methods.

Our ALLIANCE Readiness for Engagement working group is also supporting these goals by collating the learning taking place across the ALLIANCE’s lived experience engagement portfolio. This group is producing a range of engagement tools, guides, and policies to support our engagement work, including a ‘Preparing for Engagement’ and ‘Reaching seldom heard communities’ toolkit, which will be shared on the ALLIANCE website in early 2024.

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