SPICe first published a blog on long COVID in June 2021, Long COVID: will the policy response lead it into the long grass? An update blog was published in February 2023.
This blog provides a further update on recent service and policy developments. It intends to supplement the existing blogs and should be read alongside them. The House of Commons library has published a research briefing on long COVID and the Welsh Government has published Science Evidence Advice: long-COVID update 2024, which may be of interest.
Long COVID is a condition where people have signs and symptoms that develop during or after an infection that is consistent with COVID-19, which continues for more than four weeks and are not explained by an alternative diagnosis.
Estimating the prevalence of long COVID in Scotland
The Office for National Statistics (ONS) published estimates of prevalence of ongoing symptoms of COVID-19 for Scotland covering the period March 2021 to March 2023. Estimates were produced from the UK Coronavirus (COVID-19) Infection Survey which ran until March 2023.
The ONS also published estimates of self-reported long COVID prevalence in Scotland using data from the Winter Coronavirus (COVID-19) Infection Study which ran from November 2023 to March 2024. The latest estimates of long COVID prevalence from the Winter COVID-19 Infection Study was that 168,000 people (3.2% of people living in private households) in Scotland had self-reported long COVID in March 2024.
The Scottish Health Survey (SHeS) also asked participants questions on long COVID when it was undertaken in 2021 and 2022.
Using these data sources, the Scottish Government has published, Investigating the prevalence of long COVID in Scotland, which presents new estimates of long COVID prevalence based and specific insights into long COVID in Scotland.
As the ONS surveys have now ended, the Scottish Government has said that future estimates of long COVID prevalence will use data from the Scottish Health Survey. It is expected that the prevalence estimates for 2023 will be published in November 2024.
Long COVID funding in Scotland
In September 2021, the Scottish Government announced a £10 million Long COVID Support Fund to help NHS boards respond to the condition. The intention was for this to be allocated and spent over the three financial years (2022-23, 2023-24, 2024- 25). As of 11 July 2024, a total of £5,681,361 had been allocated to organisations from the fund.
The Scottish Government has said that it:
“…remains committed to delivering the £10 million Long COVID Support Fund in full, and we anticipate that the remainder of the funding will be allocated within the financial years 2024-2025 and 2025-2026”.
The table below shows the breakdown of expenditure from the Long COVID Support Fund over 2022-23 and 2023-24.
Organisation or project | Amount spent 2022-23 | Amount spent 2023-24 | Amount allocated 2024-25 (as of 11 July 2024) |
NHS Ayrshire and Arran | £35,590 | £134,523 | £131,288 |
NHS Borders | £11,162 | £49,253 | £38,319 |
NHS Dumfries and Galloway | £0 | £55,598 | £55,598 |
NHS Fife | £0 | £23,902 | £124,636 |
NHS Forth Valley | £0 | £110,631 | £99,414 |
NHS Grampian | £34,125 | £160,756 | £178,393 |
NHS Greater Glasgow and Clyde | £12,992 | £582,859 | £416,618 |
NHS Highland | £45,350 | £167,586 | £117,310 |
NHS Lanarkshire | £320,007 | £320,007 | £224,005 |
NHS Lothian | £63,265 | £367,719 | £268,168 |
NHS Orkney | £14,716 | £14,716 | £10,301 |
NHS Shetland | £0 | £0 | £9,573 |
NHS Tayside | £113,548 | £194,620 | £138,330 |
NHS Western Isles | £19,988 | £19,988 | £13,992 |
NHS National Services Scotland | £101,498 | £277,144 | 251,422 |
NHS Inform microsite development | £18,276 | £5,676 | £0 |
Thistle Foundation | £27,228 | £0 | £0 |
Health and Social Care Alliance Scotland (the ALLIANCE) | £13,345 | £0 | £0 |
Covid Aid | £144,095 | £0 | £0 |
Chest Heart & Stroke Scotland | £28,904 | £0 | £0 |
Long Covid Scotland | £25,000 | £0 | £0 |
Scottish Opera | £86,892 | £0 | £0 |
Scottish Ballet | £3,035 | £0 | £0 |
Total | £1,119,016 | £2,484,978 | £2,077,367 |
Source: Scottish Government
Long COVID service
The Scottish Government has confirmed that there no current plans to update the publication Scotland’s Long COVID Service, published in September 2021. This set out the four elements of the Scottish Government’s approach:
- supported self-management
- primary care and community-based support
- rehabilitation support
- secondary care investigation and support
The Alliance has published a report Accessing Long Covid services in Scotland: to be believed, listened to, and supported which found:
“Most of the people surveyed had attempted to access health and social care services to support their health and wellbeing. They reported their experiences of accessing care was generally negative, but with some positive aspects – for most, this was around relationships with healthcare professionals, especially GPs.”
Development in research
Since the last blog was published, two additional research studies have been awarded funding by the Scottish Government’s Chief Scientist Office (CSO).
In total the CSO has awarded around £3.1 million to 11 projects on the long-term effects of COVID-19. This includes projects to better understand the underlying risk factors, prevalence, symptoms and impacts of long COVID, to examine effects on cognitive function, to evaluate rehabilitation approaches, and to examine access and explore how to improve people’s support through primary care.
The House of Commons Library briefing provides a summary of National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) funded studies to improve understanding of long COVID. Information on ongoing research in Wales can be found in the Welsh Government’s briefing Science Evidence Advice: long-COVID update 2024
Economic inactivity and long COVID
The Institute of Fiscal Studies published research on long COVID and the labour market. This estimated that one in ten people who develop long COVID stop working, with sufferers generally going on sick leave (rather than losing their jobs altogether). Those with long COVID have an increased risk of reducing their work hours to zero, with an associated fall in earnings.
A recent SPICe briefing on Economic Inactivity and Ill Health in Scotland, noted that several pieces of research show that increases in ill health due to the pandemic are unlikely to have caused documented changes in inactivity rates. Long Covid is unlikely to be the cause of rising inactivity due to ill health in Scotland, while mental health issues are increasingly important for explaining this trend.
Recent parliamentary business
International long COVID day, 13 March 2024, was marked in the Scottish Parliament by a debate on motion S6M-12371: International Long Covid Awareness Day 2024.
Recent parliamentary questions cover topics including the Scottish Government’s Long COVID Service publication and specialist treatment for long COVID and public health messaging.
The COVID-19 Recovery Committee published its report on its inquiry into long COVID on 26 April 2023. The inquiry focused on the themes of awareness and recognition, therapy and rehabilitation and study and research. The Scottish Government’s Minister for Public Health and Women’s Health responded to each of the report’s recommendations.
In its Legacy Report the COVID-19 Recovery Committee noted:
“The Committee considers that the Scottish Government’s actions to improve awareness and recognition, therapy and rehabilitation and study and research of Long COVID should be monitored by the Scottish Parliament for the remainder of Session 6. The Committee draws the Health, Social Care and Sport Committee’s attention to the matters highlighted in the Committee’s report on Long COVID and the Scottish Government’s response. The Committee recommends that the Health, Social Care and Sport Committee should seek to identify opportunities to consider the progress being made on the recommendations set out in the inquiry report for the remainder of this session.”
The Health, Social, Care and Sport Committee considered this paper on 19 September 2023. The Committee has also received correspondence from Long Covid Scotland regarding the COVID-19 Committee’s Long Covid inquiry. This outlined the group’s concerns regarding the implementation of the recommendations from the inquiry.
There is also a cross-party group on long COVID. The group last met on 1 October 2024.
“The group aims to elucidate the impacts that Long-COVID has on the people living with the condition, and seeks to ensure that they have a strong voice within the Scottish Parliament. We believe those voices should be at the heart of every cross-party meeting and recognise that Long-COVID affects people of all age groups, including children. Long-COVID has significant educational, social, economic, and cultural impacts for people living with Long-COVID”.
Further information
Long COVID educational resources have been published on the NHS Education for Scotland’s learning platform – Turas.
Information for the public is available from the Scottish Intercollegiate Guidelines network through its webpage on Long Covid.
NHS inform has information on long COVID, this information was updated and expanded in 2023 following a process of user experience research with people living with long COVID.
There are a number of third sector organisations supporting people living with long COVID in Scotland, including:
The UK COVID-19 inquiry has also been taking evidence from long COVID groups and expert witnesses.
Lizzy Burgess, Senior Researcher, Health and Social Care, SPICe