Long Covid UK: A message from our chair
Long Covid Support began in 2020 as a Facebook group. People who were not recovering as expected after acute Covid-19 found one another online. They came together to support each other, and that simple act of mutual support became the foundation of everything that followed.
As the community grew, so did the need for advocacy, research and better care. In May 2022, the charity Long Covid Support was formally established to take that work forward.
We had hoped that the need for our work would be temporary. It has not been. Long Covid continues to affect millions of people across the UK, yet too many people are still struggling to access the recognition, care and support they need. Not enough is being done to address the scale and persistence of this illness, and the consequences for individuals, families and society are profound.
From the beginning, our work has brought together peer support, research involvement and advocacy. We have worked nationally, alongside policymakers, researchers, health systems and people affected by Long Covid, to make sure their experiences and needs are heard — and, crucially, acted upon.
But being heard is not enough. People affected by Long Covid need meaningful action: better access to appropriate care, sustained investment in research, greater understanding across health and social care, and policies that reflect the reality of living with a complex and often disabling condition.
Today, Long Covid Support becomes Long Covid UK.
This is the same charity, the same team, and the same mission: to drive systemic, long-term change and improved outcomes for people affected by Long Covid and their carers.
Our new name reflects the organisation this community has built. It recognises the national scope of our work and better describes what we do today: bringing together community, research and influence to improve the lives of people affected by Long Covid across the UK.
We will continue to work alongside our valued partners across the Long Covid charity landscape, including specialist organisations in Scotland, Wales and Northern Ireland. Our shared commitment to people affected by Long Covid makes collaboration more important than ever, and we look forward to strengthening those relationships further (find out more about those partnerships here).
The need for this work is not going away. Neither is our determination to see change. Long Covid must remain a priority for governments, health services, researchers and policymakers. The current response does not yet match the scale of the challenge, and we will continue to press for the action that people affected by Long Covid have a right to expect.
This charity exists because people who were unwell and overlooked decided to come together, support one another and act. That spirit remains at the heart of who we are.
Long Covid UK is a new name for an organisation built by its community — but it is not a new cause. We will continue to push for a future in which people affected by Long Covid are heard, supported and able to access the care, understanding and opportunities they deserve.
Nigel Rothband
Chair of Trustees, Long Covid UK