The ALLIANCE Voices of Lived Experience 2021 review

Creating networks to platform voices of lived experience.

The ALLIANCE set up a Heart Disease Network and Reference Group in 2021 to support the Scottish Government’s refreshed Heart Disease Action Plan which will be overseen by a National Heart Disease Task Force. Our role is to ensure that the Task Force is influenced and informed by people with lived experience of heart disease. We are working closely with our partners – Chest Heart & Stroke Scotland and British Heart Foundation to ensure that the group is as diverse and inclusive as possible.

In October we hosted an online event to officially launch the Heart Disease Network. We received a fantastic response and had over 40 participants attended to hear more about the network. During the discussion we had a rich conversation to help shape the network moving forward.

The Heart Disease Network have been working closely with Public Health Scotland to explore cardiac audits. The purpose of the cardiac audits is to ensure that the information the NHS holds is reliable and standardised so that it can be used safely to support decisions about clinical needs. The network have been providing key insights to shape the work moving forward.

In addition, a new Respiratory Network for people affected by respiratory conditions has been set up in partnership with Chest, Heart & Stroke Scotland, Asthma UK and the British Lung Foundation. This network will bring together people to share their lived experience with Scottish Government and influence the implementation of the Respiratory Care Action Plan. Following the establishment of the network, a Reference Group will be set up from members who will directly inform the action plan.

During the launch event in December the Respiratory Network heard from Dr Tom Fardon from Respiratory and General Internal Medicine at NHS Tayside.

In partnership with Diabetes Scotland, a new Diabetes Network has also been set up for people affected by diabetes. The network will bring together people with lived experience, support them to share that experience with Scottish Government and influence the implementation of the Diabetes Improvement Plan.

The network launched in December with an event, providing presentations on the work of the Scottish Diabetes Group, as well as the opportunity to shape the direction and priorities of the network going forward.

As part of the Readiness for Engagement group, we designed templates, processes, tools and guidance to support our lived experience work and wider engagement to capture our diverse knowledge, learning and skills. During this process we consulted with the wider ALLIANCE staff and will continue to develop culture, learning and knowledge to support all areas of work moving forward.

We also worked with Matter of Focus to host a series of online events bringing together individual members with lived experience and policy makers to design an outcome map examining the processes and the difference involving people can make, as well as the risks and assumptions.

During co-production week we hosted a learning event focusing on supporting the voice of lived experience, bringing together over 60 representatives across health and social care. During the event we launched Community of Practice (CoP) – Lived experience. Taking a collaborative and partnership focused approach, we have developed a community of practice of people working in this space across sectors to connect and share learning. To find out more information or to sign up please email people@alliance-scotland.org.uk (this link will take you away from our website).

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