Delayed diagnosis, fragmented care and barriers to social protection continue to affect people living with Long COVID. An EUPHA-led policy dialogue, developed in collaboration with OECD, brings their experiences together with survey findings to identify priorities for action.
The Long COVID Policy Dialogue Summary Report draws on a survey of more than 2,000 people and four focus group sessions. It highlights how the design of health and welfare systems can leave people struggling to access the diagnosis, care and financial support they need.
Among survey respondents, 27.1% waited more than 12 months for a diagnosis, while 52.6% rated their care 2 or below out of 5. These findings reinforce the experiences described in the focus groups, where participants reported difficulties navigating services and securing appropriate support.
Looking beyond individual care encounters
The findings point to structural barriers across health and social protection systems. Participants described diagnostic processes focused on excluding other conditions, difficulties accessing benefits when eligibility depends on biological test results or participation in rehabilitation, and the closure of specialist services.
The work also identifies challenges for people who have paid into social insurance systems in more than one EU country. Separate, uncoordinated claims processes can create additional obstacles to accessing support.
Together, these experiences show why improving the response to Long COVID requires action across healthcare, employment and social protection.
Priorities for policy action
Survey respondents identified several areas as extremely urgent:
- Training for healthcare professionals: 81.0%.
- Research funding: 78.3%.
- Access to multidisciplinary clinics: 69.1%.
- National clinical guidelines: 67.6%.
- Coordination across EU member states: 54%.
Focus group participants also highlighted the need to reform disability and sick leave rules so that they better reflect the experiences and needs of people living with Long COVID.
These priorities provide an agenda for national policymakers, health service leaders, research funders and social protection authorities, alongside stronger cooperation at EU level.
Guided by people living with Long COVID
EUPHA led and carried out the work, complementing OECD’s wider analysis of the financial, social and health system impacts of Long COVID.
People living with Long COVID and carers helped guide the process through an advisory board. They also contributed directly through the survey and focus groups, with the recommendations grounded in the evidence gathered.
Their involvement places lived experience at the centre of the findings and the proposed policy response.
The report underlines the need to translate these experiences into changes in how care and support are organized. Better professional training, coordinated services and accessible social protection are central to a response that meets people’s needs.
