Heart Disease and Long Covid Lived Experience roundup 2025

In 2025, the networks have continued to information share and connect people with experience of heart disease and Long Covid.

Heart Disease

In early 2025, the ALLIANCE was invited by Scottish Government’s Clinical Priorities Team to join the CVD Prevention Workstream 1 (Information & Awareness) Development Group. This workstream forms part of the Preventative and Proactive Care Programme, to which the ALLIANCE already contributed, and informs how best to increase public awareness of cardiovascular risk factors and improve public facing resources. In support, the ALLIANCE worked with the Scottish Government’s Marketing and Insights Team to recruit patient and professional focus groups to inform a review of public facing CVD preventative messaging. We also contributed as members of the CVD Quality Prescribing Guide Short Life Working Group.

Also in early 2025, the ALLIANCE continued to co-ordinate meetings of the Third Sector Partners Steering Group, chaired by Heart Failure Hub Scotland. This work culminated in delivery of a Heart Failure Hub Patient and Carer Conference on 22 March 2025, held at the NHS Golden Jubilee National Hospital, which brought together third sector support, clinical teams and people affected by Heart Failure, for a day of information sharing and conversations on the theme of ‘Living Well with Heart Failure’.

In summer 2025, we commenced a desk-based review to evidence where the third sector currently or could add value to the prevention of cardiovascular disease more broadly, and the structural factors and financial resources necessary to do so successfully. The resultant paper was finalised in Autumn 2025 and subsequently shared with key senior stakeholders across the Proactive and Preventative Care Risk Factor Programme for consideration, with a meeting taking place with those stakeholders in December 2025 to discuss and explore next steps.

In support of our evidence review and wider scoping of secondary prevention activity, we also forged new strategic relationships in 2025 – including the Common Health Assets Research Team based at Glasgow Caledonian University. We also joined a working group of third sector partners, whereby we contributed to the design, promotion and analysis of a survey exploring the current relationships between Community Health Organisations and their statutory public health partners.

In addition, national expansion of the Sudden Cardiac Death/Out of Hospital Cardiac Arrest (SCD/OOHCA) pathway commenced in October 2025 following a successful British Heart Foundation (BHF) Innovation Fund grant. The ALLIANCE continued to participate as a member of the Steering Group to advise on and support lived experience engagement. In support, the ALLIANCE co-authored an academic journal article to showcase the centrality of lived experience in this work. Dependent on the outcome of peer review in late 2025, we anticipate potential publication in early 2026. Planning also got underway for the ALLIANCE to potentially deliver more focus groups with families affected by sudden cardiac death in 2026.

Throughout 2025 we also continued to identify participation opportunities for our Heart Disease Lived Experience Network. Examples of their activity in 2025 included participation in the Connect Me Primary Care Blood Pressure Pathway Review; and continuing to inform and influence the Scottish Cardiac Audit Programme (SCAP).

Long Covid

In early 2025 we delivered four Focus Groups to inform phase one review of the NHS Long COVID Self Management Workbook, with 13 people living with Long COVID and 16 professionals/clinicians participating. Our findings included:

• The positive value placed on the workbook by patients and clinicians.
• The workbook’s role in validating people’s own experiences of Long COVID.
• Suggested content and physical format improvements.

We delivered two online webinars targeted at people affected by Long COVID – engaging with 147 people who signed up to attend and/or receive a link to the webinar recordings, with 79 people participating:

• signposting to available Long COVID services – delivered in partnership with researchers from the University of Stirling and the ALLIANCE ALISS team;

• a session delivered in partnership with Chest, Heart and Stroke Scotland to promote their support services available for people affected by Long COVID.

The webinars facilitated wider engagement with the Long COVID community, and enabled people’s experiences and concerns to be readily captured. A thematic analysis of the chat function feedback from both webinars captured key issues being raised by people affected by Long COVID during 2025 – these included:

• concerns raised re existing Long COVID services in Scotland
• concerns raised re Scottish Government strategic direction / national policy
• difficulties accessing medical specialisms
• role and recognition of the Third Sector

We continued to feed-in to various NSS Strategic Network Governance Groups. Resultant engagement support provided by us included seeking feedback from our network members to inform the Vocational Rehabilitation Workstream’s Return to Work Pack, with six of our lived experience network members contributing their constructive feedback and comments; promotion of and participation of our network members at the Data and Intelligence Workstream’s Research Symposium in February 2025; and pro-active advice, support and engagement co-ordination on behalf of the Self Management Workbook Review Sub-Group.

Delivery of a Long COVID Service Evaluation was commissioned by NSS and led by a team of Clinical Researchers at NHS Highland. The ALLIANCE was approached to lead on authoring the signposting chapter, with the support of our ALISS Team and University of Stirling colleagues, due to the pro-active support we’d provided in Spring 2025 to improve signposting to Long COVID services [see case study]. We also contributed reports and content to inform the Lived Experience Chapter.

We continued to capitalise on opportunities to capture and share peoples lived experience of Long COVID. We worked in partnership with Forth Valley Long COVID Cuppa Group over several weeks to support them to record and share a video with the NSS Governance Groups describing their own experience of engaging with people affected by Long COVID, as well as showcase their awareness-raising efforts across Primary Care in Forth Valley.

We also worked in partnership with Academia, supporting recruitment of participants on behalf of the Poverty Alliance/Robert Gordon University to inform their research on the financial impacts of living with Long COVID; as well as supporting patient recruitment on behalf of a NRS Research Fellow in Post Infection Syndromes

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