The risk of Long Covid must be a primary consideration in policy decisions

Updated: Sep 18

LongCovidSOS has written to Prime Minister Boris Johnson to express concerns that #LongCovid is not informing policy decision making. Action must be taken to prevent a detrimental impact on more lives


The letter is also published in the British Medical Journal








Recognition · Research · Rehab

www.longcovidsos.org

info@longcovidsos.org

@LongCovidSOS


12 January 2021


The Rt Hon Boris Johnson MP

Prime Minister

10 Downing Street

London

SW1A 2AA



Dear Prime Minister


In your address to the nation on 4th January you said the following regarding the vaccination programme: “By the middle of February … we expect to have offered the first vaccine dose to everyone in the four top priority groups identified by the joint committee on vaccination and immunisation….If we succeed in vaccinating all those groups we will have removed huge numbers of people from the path of the virus. That will eventually enable us to lift many of the restrictions we have endured for so long”


We have no doubt that the population is desperate to return to previous freedoms, to be able to return to work, socialise and spend time in close proximity to friends and family members. However, we and many of those still suffering from Long Covid after managing acute Covid-19 in the community in the early months of 2020 are extremely concerned at the potential consequences of such a decision.


There will inevitably be a delay between the vaccination of the most ‘at risk’ groups and the rest of the population. Hospital admissions and deaths will no doubt decrease significantly, the news media will move on to other issues and the country will heave a communal sigh of relief. However, if all or most restrictions are eliminated during this period, we run the risk of the virus circulating freely among younger people (3). We will then see a huge rise in the number of those going on to develop Long Covid.


We learn from provisional figures released by the ONS that 10% of those infected with Covid-19 go on to suffer symptoms for over 12 weeks (1). As yet we do not have data for longer time periods, but recent research suggests that many continue to suffer for 7 months or more (2) and evidence from patient groups supports this. It is not yet established whether or not these long-term symptoms may lead to chronic disease and permanent disability.


Unfortunately, we still don’t know exactly who is at risk from Long Covid and so cannot vaccinate this group prospectively. This cohort will be working age people who are contributors to the economy and who will develop a debilitating condition for which there is currently no effective treatment. Their transformation from taxpayers to consumers of NHS resources will be keenly felt. There are already very concerning numbers of previously healthy people with Long Covid who require sick pay and disability benefits. More are joining them in this wave of the pandemic and a further catastrophic increase must be avoided at all costs.


We appreciate that decisions on relaxing restrictions are not easy ones for any government to make. However, we urge you not to base these decisions on deaths and hospital admissions alone. It would be very short-sighted indeed to ignore the potential for a huge increase in people with long-term ill-health on top of those already suffering.


We are asking you to please make Long Covid a primary consideration in your policy decision making for lifting restrictions. The potential for Covid-19 to cause significant morbidity is now recognised, and both NICE and NHS England are making provision for assessing, diagnosing and treating those affected. The availability of a vaccine does not mean that we can relax containment measures – we must continue to test, trace and isolate sufferers, take steps to make schools safe and most importantly ensure that the public is appraised of their ongoing risk so that as individuals they continue to be mindful of the consequences of infection.


Yours sincerely



LongCovidSOS

Ondine Sherwood

Kay Whitehead

Sandra Edwards

Karen Matthews

Lyth Hishmeh

Francis Simpson

Leanne Ford

Tom Stayte


cc:


The Rt Hon Matt Hancock MP

Secretary of State for Health and Social Care

House of Commons

London

SW1A 0AA


The Rt Hon Jeremy Hunt MP

Chair, UK Health and Social Care Committee

House of Commons

London

SW1A 0AA


Professor Chris Whitty

Chief Medical Officer for England

Department of Health and Social Care

39 Victoria Street

London

SW1H 0EU


The Lord Bethell

Parliamentary Under-Secretary (Department of Health and Social Care)

House of Lords

London

SW1A 0PW


References

1. https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications

2. https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2

3. Younger people may now be more vulnerable to severe disease: https://www.theguardian.com/society/2021/jan/07/so-many-covid-patients-younger-this-time-hospitals-full , https://www.bbc.co.uk/news/health-55559727




On 04/03/2021 we received the following reply from the Dept of Health and Social Care. The email did not address the concerns we raised:


Our ref: PMDE-1295310

Dear LongCovidSOS,   Thank you for your correspondence of 12 January to the Prime Minister about easing lockdown restrictions. Your email was forwarded to the Department of Health and Social Care and I have been asked to reply. I apologise for the delay in doing so.

From the beginning of the COVID-19 outbreak, the Government’s policies have been guided by the advice of the Scientific Advisory Group for Emergencies, which is led by the Chief Scientific Adviser and Chief Medical Officer for England, and the response is kept under constant review.

Public safety is the Government’s priority and it has a team of public health experts and scientists working round the clock to make sure the NHS, the care sector and the country as a whole are fully prepared.

The Government understands that these are difficult times and that the measures people are being asked to take are very disruptive to normal life. However, it is vital those who are most vulnerable are protected, and people are therefore being asked to act in the interests of everyone in society.

As you will know, the Prime Minister recently announced the Government’s roadmap to ease lockdown restrictions in England. The success of the vaccine programme means the Government can begin to chart a course out of lockdown. However, the Government will take a cautious approach to easing lockdown, which is guided by the data in order to avoid a surge in cases which would put unsustainable pressure on the NHS and claim more lives before people have the chance to take a vaccine.

Further information about the roadmap is available at:

www.gov.uk/government/publications/covid-19-response-spring-2021

In addition, you may be interested to know that the Department recently announced £18.5million to tackle long COVID through research. Further information about the research projects involved is available at:

www.gov.uk/government/news/185-million-to-tackle-long-covid-through-research

I hope this reply is helpful.

Yours sincerely,   Joseph Rawlinson Ministerial Correspondence and Public Enquiries Department of Health and Social Care

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