Long Covid Support is a registered charity in England and Wales, formed by a group of people struggling to recover from Covid-19.
Our work spans three key areas:
Our tightly moderated, international Long Covid Support Group is a friendly, inclusive space for people experiencing the diverse, debilitating and alarming symptoms of Long Covid to share information, help each other through the bad days and celebrate in the good.
Strictly for patients or their direct carers, our online group is one of the largest of its type in the world, with members in 100 countries.
In addition to the posts written by members, we host an active programme of social and wellbeing activities including Zoom chats, the Long Covid Choir, chair yoga and opera breathing.
Our advocacy work includes our instrumental role in establishing the Long Covid term, now used around the world, although our focus tends to be on the UK. We speak at conferences and contribute to pieces in international, national and local media.
We provide patient and public voices to UK bodies involved with Long Covid, including the NHS England Taskforce on Long Covid, National Institute of Care Excellence, National Institute of Health Research, Department of Health & Social Care, Department of Work and Pensions as well as the World Health Organisation. We advise and provide insights from our surveys into patient experience.
We have a dedicated team focused on employment and benefits, comprising people with professional as well as lived experience. Our work focuses on supporting workers and employers with return to work, and we have co-developed materials with bodies including the UK's Society of Occupational Medicine and Chartered Institute of Personnel and Development.
We strongly believe that patients should be at the heart of research, working as equal partners with scientists throughout the research lifecycle, and we promote the sharing of learnings between all chronic post viral conditions.
We work actively with researchers, including as co-investigators and members of advisory groups, and have co-authored numerous papers published in scientific journals. We host the Covid-19 Research Involvement Group in which researchers can interact directly with people with Long Covid for participation, involvement and engagement in research. In December 2020 Long Covid Support partnered with ISARIC and GLOPID-R to organise the Long Covid Forum, the first international research conference on the condition, which was opened by WHO Director General Dr Tedros Adhanom Ghebreyesus.
We have worked with Imperial College London’s Patient Experience Research Centre to co-create the VOICE Global Long Covid Research Involvement Hub. This is a focal point for research where the public can sign up to receive alerts about new research, and investigators can place opportunities for involvement, participation and engagement in research.
At Long Covid Support our vision for everyone affected by Long Covid to have access to appropriate treatment and support.
Through support and advocacy, to research and education, we are on a mission to:
- connect people living with Long Covid globally to share learnings and perspectives and provide support to improve their quality of life
- engage with key policy makers and service providers so that patients’ rights and needs are heard and they are equal partners in all decisions about their health, employment and welfare
- support research into effective treatments, innovations and services and to ensure that research priorities are informed by lived experience
- raise awareness and improve understanding so that Long Covid is well defined, with high quality information, support and health services in place throughout the UK
- Peer-led: Warm, genuine, compassionate, empathetic and approachable
- Inclusive: Diverse, equity-oriented and open-minded
- Expert: Professional, lived-experience informed, evidence based and knowledgeable
- Driven: Motivated, tenacious, passionate and determined
- Collaborative: People-centred, partner-oriented, open, fair and holistic
- Dependable: Trustworthy, safe and respected