Lived experience networks review 2022

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

The Heart Disease network has continued to work closely with Public Health Scotland to explore lived experience in relation to cardiac data audits, hosting events throughout the year. Several other events were hosted, including a general information event with speakers from Scottish Government and a series of regular evening meetings to build collaboration within the network. In the second half of the year, the network worked closely with British Heart Foundation to support a national perspective for the Heart failure with preserved ejection fraction (HFpEF) Engagement Sub-group as part of the Heart Disease Action Plan. In April, Media Education training was offered to members of all networks, with six members taking part.

The Diabetes Network launched in December 2021, and our key achievement since launching has been a large piece of work around information and support offered to people with diabetes post-diagnosis. This took place throughout Spring and Summer, with a survey and several focus groups feeding into a final comprehensive report and shorter summary report with key findings. The feedback from clinicians and Scottish Government colleagues was very positive and has informed a draft education pathway for which we hosted focus groups and interviews with network members in December to gain their feedback. We also produced a ‘Voices of Lived Experience’ video which has been shared with clinicians to support the voice of lived experience. Finally, we have supported the design of an information leaflet for people newly diagnosed with type 2 diabetes.

Since the launch event in December 2021, the Respiratory Network has continued to grow, hosting an Information Event on 25 August to increase membership and gather network members together. This was followed by a survey and discussions with network members on their experiences of pulmonary rehabilitation. We have continued to develop our relationship with partners at Scottish Government, Asthma and Lung UK and Chest, Heart & Stroke Scotland and are planning future work to support plans for respiratory child to adult transitions. We have attended meetings of the Respiratory Care Advisory Group and subgroups throughout the year, along with Lung Health CPGs to raise the profile of the network and promote the importance of the voice of lived experience.

The Long Covid Network was set up in spring, with a launch event on 10 August, from which a summary report was shared with network members and National Services Scotland (NSS) stakeholders. Following this, we launched a survey to hear about people’s experiences of Long Covid to shape priorities for the Network going forward.

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