The Long Covid Groups' joint letter to Andy Burnham
10 September 2026
Dear Mr Burnham,
Welcome and proposing a meeting to discuss Long Covid
Congratulations on your appointment as Prime Minister. We are writing to you from a coalition of charities supporting people with Long Covid, comprising Long Covid Kids, Long Covid Physio, Long Covid Scotland, Long Covid SOS and Long Covid UK, to request a meeting with you or your team to discuss urgent national action on Long Covid.
According to ONS statistics, approximately 2 million people in the UK are estimated to be living with Long Covid, including 100,000 children. Our organisations support adults, young people and carers through peer support, information and advocacy. Together, we work across all four nations to highlight the need for specialist care, sustained research investment and better public understanding of Long Covid. While healthcare delivery is devolved, the UK Government has a critical leadership role in research, public health preparedness and cross‑government policy.
We have long-standing relationships with DHSC, DWP, the Department for Education, NHS England and colleagues across the devolved administrations, built over many years of patient-led advocacy. As core participants in the UK Covid Inquiry, we have provided evidence on the impact of Long Covid on the workforce, children and the economy, and on preventing post‑infectious conditions in future pandemics.
We also work closely with the All‑Party Parliamentary Group on Long Covid, with Long Covid UK acting as secretariat.
We would welcome the opportunity to bring some key areas of concern directly to your team and explore how we can work together to see real, tangible change:
Treatment: we want to see better treatment for people with Long Covid, who currently face a lack of clinical expertise; lengthy waiting times; and inappropriate, generic care which cannot account for the complexity of the condition. The lack of specialist paediatric care is a significant concern, leaving young people excluded from education, work and key social milestones for years with no help available locally. Long Covid clinics continue to close across the country and significant multi-disciplinary experience accumulated through them is at risk of being lost. Decision-makers must introduce a joined-up, strategic approach to this multi-systemic condition, introducing ring-fenced, recurrent funding for Long Covid services and a national standard for Long Covid services, including dedicated paediatric services, across all four nations.
Research: Long Covid has no cure, and the only way we will get closer to one is to fund high-quality clinical research. We support calls for increased, ring-fenced investment in Long Covid research, increasing our previous £80 million ask to £100 million. Investment should include biomedical, clinical, rehabilitation, paediatric and health services research, alongside mechanisms to rapidly translate emerging evidence into clinical practice across all four nations and meaningful patient involvement.
Employment and welfare: Too many people with Long Covid have been forced to reduce their hours, leave employment or retire early because they could not access support - including many healthcare workers who contracted Covid-19 while caring for patients during the pandemic. Closer collaboration between healthcare, employers and the DWP could help ensure that people with Long Covid can remain in or return to work wherever possible, and that those who are too unwell to return to work still receive support. The DWP should establish structured engagement with Long Covid organisations to better understand the fluctuating nature of the condition, including lived experience input into Access to Work assessment providers. Equivalent engagement should happen with Social Security Scotland to deliver consistent support across the UK.
Prevention and awareness: UK society has taken steps to move forward from the pandemic and forget the trauma it caused – but for people living with Long Covid, this simply isn’t possible. We see new Covid-19 infections every day with each new infection carrying a risk of long-term disability. Patients face stigma and ignorance when trying to access support, with healthcare providers refusing to engage with preventative measures like masking. Improved public awareness and practical preventative measures, such as implementing the relevant UK Covid-19 Inquiry recommendations on clean air; ensuring equitable vaccine access and eligibility for people with Long Covid; and adopting a ‘mask if asked’ approach across healthcare providers, are essential.
Strategic action: There remains no coherent national strategy for Long Covid care, and no consistent, reliable methods of counting the numbers of those affected. This results in inconsistent clinical pathways, significant regional variation and unacceptable inequity in access to diagnosis, treatment and rehabilitation. We would like to see a national commission on Long Covid, with representation across the devolved nations, to develop a long-term, cross-government and multi-agency strategy for supporting and caring for people living with this disease. The Government should also commit to beginning implementation of all relevant UK Covid-19 Inquiry recommendations by September 2027 and establish robust population-survey methods to ensure its impact continues to be better understood. The 2 million people affected need to see stronger action.
We are asking the UK Government to provide national leadership, establish clear accountability and begin delivering the practical changes that people living with Long Covid urgently need. We would welcome the opportunity to meet to discuss these recommendations, and to share the experiences of our communities. Please do get in touch below to let us know when would suit you. We very much look forward to hearing from you.
Yours sincerely,
Sarah Craner, Chair - Long Covid Kids Lindsay Skipper, director, and Todd Davenport, Chair - Long Covid Physio Jane Ormerod, Chair, Long Covid Scotland Nigel Rothband, Chair, Long Covid UK Sarah Barley McMullen, Chair - Long Covid SOS
