The campaign to beat the pandemic

Comment The Scottish Government and Long Covid

The Scottish Government is neither preventing nor funding treatment for Long Covid. This has to change!

At the time of writing this briefing, Scotland has the highest rate of Covid-19 infections in Europe, [1] yet no additional restrictions nor mitigation measures are being considered by the Scottish Government. The Government is justifying this inaction by the fact that far less people are being treated in hospital than during the first two waves of Covid, thanks to the fact that the majority of people over 50 as well as particularly vulnerable younger people are now fully vaccinated.

The age groups with the highest rates of infections since lockdown was lifted have been those between 15 and 24, followed by adults age 25-44 and children under 15. [2]

Focusing on hospitalisation and deaths only rather than all infections means ignoring the long-term health effects and disability suffered by a significant minority of people of all ages after Covid-19 infections, regardless of how mild or severe the initial symptoms had been.

In England, specialist help for Long Covid is now being provided at 60 sites, [3] although some sufferers report treatment delays of several months. [4] 15 new hubs for children with Long Covid are being set up. [5] However, the Scottish Government stated earlier in June 2021 that no specialist Long Covid clinics are being funded or planned in Scotland. People with Long Covid in Scotland are being referred to a range of different services, whereas what they need in relation to their complex needs is a specialist service within which a range of NHS professionals, particularly those in the allied services sector, are coordinated. This means that people with Long Covid are getting even less overall access to help and support in Scotland than in England, as well as less appropriate services.

Finally, people suffering from Long Covid across the UK are routinely experiencing discrimination and disadvantage at work and the Trade Union Congress is calling for Long Covid to be classed as a disability under the Equality Act. [6] While equality legislation is not devolved in Scotland, far more can and must be done to support people affected by this condition.

What needs to be done:

1. Prevention: The Scottish Government needs to urgently change its recent approach to Covid-19 and act to suppress infections, using proven public health measures and mitigations in workplaces including schools and hospitality. Otherwise, thousands and perhaps tens of thousands more people in Scotland will be suffering from Long Covid.
2. Treatment and support: It is unacceptable that the Scottish Government is refusing to fund specialist NHS support for adults and for children suffering from Long Covid. Such support must be urgently provided and funded and be accessible to everybody affected without delay.
3. Protection from discrimination: Although the Scottish Government does not have powers over equality legislation, it can and must fund advice and advocacy for people with Long Covid affected by discrimination.

What is Long Covid?

The term refers to new symptoms of ill health that people suffer for more than four weeks – but often far longer – after a Covid infection. According to a survey of 2,550 adults with Long Covid, the main persisting symptoms were exhaustion, chest tightness, shortness of breath and headache, with cognitive problems (brain fog, concentration and memory problems) and palpitations becoming more common over time. However there are other symptoms too. 83% reported symptoms which affected at least three organ systems.[7] According to the authors: “Findings from this survey indicate that Long Covid is a debilitating multisystem illness for many of those experiencing it. For most participants, several of their initial symptoms became less prevalent with time, with the stark exception of cognitive dysfunction and palpitations. However, for a minority of participants who had extensive multisystem involvement from the start, many symptoms tended to become more common with time.”

The underlying biology of Long Covid is not yet understood. And, as an article in the science magazine Nature states: “preliminary data suggest that long COVID could be several disorders lumped into one”. [8]

One recent finding from a preprint (publicly posted prior to peer review) longitudinal study in the UK [9] is that people who have had Covid-19 infections, compared to ones never infected, have a statistically significant “loss of grey matter” in certain areas of the brain. How far brain damage caused by Covid-19 is responsible for some Long Covid symptoms remains unknown. As long ago as October 2020, a Harvard Medical School neurologist commented: “Particularly troubling is increasing evidence that there may be mild — but very real — brain damage that occurs in many survivors, causing pervasive yet subtle cognitive, behavioural, and psychological problems. [10]

How many people suffer from it?

According to figures by the Office off National Statistics (ONS), in early March 2021, 1.1 million people reported having suffered symptoms for more than four weeks, 697,000 of them for more than 12 weeks, and 70,000 for more than one year. The large majority of them reported that symptoms were severe enough to limit their day-to-day activities.[11]

From an ONS study, 13.7% of people who had tested positive for Covid suffered at least 12 weeks of symptoms. The most affected age group was people age 35-49, i.e. people most of whom are not fully vaccinated at the time of writing this briefing. However, Long Covid affects people of any age, including children. Not surprisingly, frontline workers have been particularly affected. [12]

It is therefore inevitable that thousands of people who are being infected by Covid-19 in Scotland will go on to suffer health problems for many months. The long-term outlook for those who do not recover within a year remains unknown.

Footnotes

[1]  travellingtabby.com/uk-coronavirus-tracker/ and https://uk.news.yahoo.com/uk-highest-rate-covid-cases-europe-155248784.html

[2] travellingtabby.com/scotland-coronavirus-tracker/

[3] england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

[4] theguardian.com/world/2021/may/30/some-long-covid-sufferers-in-england-waiting-months-for-treatment

[5] england.nhs.uk/2021/06/nhs-sets-up-specialist-young-peoples-services-in-100-million-long-covid-care-expansion/

[6] tuc.org.uk/sites/default/files/2021-06/Formatted version of Long Covid report – v1.3.pdf

[7] Characteristics of Long Covid: findings from a social media survey, Nida Ziauddeen et.al., medRxiv, March 2021 medrxiv.org/content/10.1101/2021.03.21.21253968v2

[8] The four most urgent questions about long COVID, News Article, Michael Marshall, Nature, 9th June 2021 nature.com/articles/d41586-021-01511-z

[9] Brain imaging before and after COVID-19 in UK Biobank Gwenaëlle Douaud et.al., MedRxiv preprint, 15th June 2021 medrxiv.org/content/10.1101/2021.06.11.21258690v1.full.pdf

[10] health.harvard.edu/blog/the-hidden-long-term-cognitive-effects-of-covid-2020100821133

[11] ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021

[12] tuc.org.uk/sites/default/files/2021-06/Formatted version of Long Covid report – v1.3.pdf

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