Help End the Long COVID Crisis (UK Letter)

© Long Covid Action Project

To Whom It May Concern:

I am writing as part of the International Long Covid Awareness Day, to alert you to the ongoing concern of many thousands of Long Covid sufferers across the nation, and the lack of support and awareness that all of these patients are receiving. Below is a list of project demands which we urge you to consider. In the most recent report from the Office for National Statistics, they report that “Long COVID symptoms adversely affected the day-to-day activities of 1.5 million people (77% of those with self-reported long COVID), with 380,000 (19%) reporting that their ability to undertake their day-to-day activities had been ‘limited a lot’". The situation is continuously increasing, as more and more people who have contracted acute Covid, go on to suffer from hallmark Long COVID symptoms, regardless of vaccination status or severity of their SARS-CoV-2 infection. Whilst the ZOE study reports that being vaccinated can halve the risk of developing Long Covid - half of a large number, is still a large number of new patients. Concerningly, a study of more than 13 million people found vaccination only lowers the risk of long COVID after infection by about 15%.

The widespread presence of Long COVID and the lack of access to prevention, support, and treatments has already created a crisis for individuals and communities. The United KIngdom cannot defend itself if its people are battling a disabling disease, with no proven cure or effective treatment yet available. This crisis also impacts the economy, as the Financial Time reports, “Long Covid is costing UK workers a total of £1.5bn a month in lost earnings and looks set to have a lasting impact on Britain’s economy, according to research by the Institute for Fiscal Studies.” Furthermore, Long COVID poses unprecedented risks for the world economy that could rival the Great Depression. According to David Cutler, an economist at Harvard University, Long COVID could cost the economy $3.7 trillion in lost wages, increased medical expenses, and reduced quality of life. In 2023, up to 4 million Americans between 18 and 65 are missing from the workplace due to Long COVID. That could equate to 15% of the current labor shortage according to a January Brookings Institution report.

The current response to Long COVID is not enough to tackle these problems. Long Covid Clinics are fairly prevalent in England, but are not available in Scotland, and in many cases across NHS England, they are being defunded and scaled back in 2023, leaving many patients on NHS waiting lists for a year or more before getting assessed. Today we don’t have enough clinics, enough funding, enough education, nor enough specialists to care for the rising cases of Long COVID. As a large and ever-growing international community, we feel that the UK government is not meeting the needs of this crisis.

Sadly, a further reason to promote Long COVID Awareness Day has just arisen. The Office for National Statistics has just ceased carrying out their ‘gold standard’ Long COVID surveys. Without these surveys, information about Long COVID will be much harder to come by, and it will be harder to know the prevalence of it. I have lobbied three Members of Parliament about this sad development, and also Independent Sage. Now, more than ever, we need clear information about the severity of Long COVID.

Therefore, We, the undersigned, demands that the UK Government explains what steps you are taking in response to the Long COVID crisis. Specifically, the following objectives have been prepared by LCAP (the Long Covid Action Project) and we ask that you issue a statement of response to LCAP in which you consider the following points:


1. Declare Long Covid a public health emergency

  • There is a huge number of adults and children with Long Covid patients in the UK and this number is growing daily with further surges of acute Covid infections. This is a disabling multi-system condition. It is a Public Health Emergency and should be treated as such.

2. Include risk of developing Long Covid in public health messaging, and the risks associated with reinfection.

  • Even with the fully vaccinated, there is a risk of developing Long Covid. Long Covid can also be developed on the 3rd/4th/5th reinfection, so an individual’s experience of symptoms in a previous infection has no bearing on future infections. This is not being communicated in public health messaging - the general public should be informed.

3. Reintroduce mask mandates in healthcare settings

  • Around 35% of new acute Covid infections are from healthcare settings - which is a shocking state of affairs. Community transmission in hospitals is unacceptable. Masks should be compulsory in all healthcare settings - for the safety of healthcare staff, sick patients and anyone else who needs to visit these settings.

4. Establish and fund a permanent entity for Long Covid - building on Mel Heightman + Graham Burns's roles as joint LC National clinical directors NHS England » National clinical directors and specialty advisers

5. Fund and staff Long Covid clinics

  • Expand the provision of Long Covid clinics into NHS Scotland and Northern Ireland, ensuring that there is a high standard of care across all NHS Trusts - so that Long Covid patients are not presented with a ‘postcode lottery’

6. Fund / prioritise Long Covid research

  • Whilst there are ongoing research studies into Long Covid in UK institutions, this activity could be greatly expanded, prioritised and funded. Research should be directed towards expanding upon what is already understood - for example, there is not a need to revisit concepts that have been debunked, such as Graded Exercise Therapy. Research into true ‘cure’ potential avenues.

7. Make benefits easier to apply for for Long Covid sufferers

  • All disabled people are presented with a challenging, time-consuming and labyrinthian system when attempting to apply for living support. This should be streamlined and made much more disability-friendly, especially when considering disabilities such as Long Covid and ME/CFS which have a strong Chronic Fatigue presentation. People with Chronic Fatigue Syndrome should not be expected to make themselves much more ill through the attempt to seek help with living support.

8. Fund training on Long Covid for primary care

  • GPs and other staff in Primary Care settings should be trained on Long Covid - the presentation of symptoms in particular. This is the main access point into care in this country, and many GPs continue to be under-informed about the different presentations of Long Covid and related chronic conditions. We call for effective and consistent nation-wide training for all primary care staff.

9. Issue guidance to businesses on Long Covid in the workplace

  • Many companies and organisations are up to date with how Long Covid can present in the workplace, however, this lacks consistently. We call for the UK government to provide guidance to all businesses about Long Covid and potential reasonable adjustments under the Equality Act 2010, in order to support as many people with Long Covid as possible to remain active in the workforce.

10. Endorse Clean Air Bill - over 30 organisations/charities wrote a letter to the Health Secretary on 30 Jan 2023 - Legislate to Ventilate - Long Covid Support

  • Covid is transmitted primarily through aerosol transmission in the air. All public transport and public buildings such as hospitals and schools should have clean, filtered air, to reduce community transmission, and thus prevent developing Long Covid. We endorse the Clean Air Bill and are requesting that every public space, especially vulnerable communities and high risk environments such as schools and health and social care settings, upgrade their current ventilation and air filtration units and install visible CO2 monitors.