SPICe first published a blog on long COVID, Long COVID: will the policy response lead it into the long grass?, in June 2021. Since then, the numbers of people in Scotland reporting having long COVID has increased from 79,000 to 175,000, an increase of 122%.
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.
What are the symptoms of long COVID?
There are many symptoms associated with long COVID, these can include respiratory, cardiovascular, neurological and musculoskeletal symptoms. The Office for National Statistics reported that fatigue continued to be the most common self-reported symptom of long COVID (71%), followed by difficulty concentrating (52%), shortness of breath (48%) and muscle ache (47%).
How many people have long COVID in Scotland?
Since the last blog was published in June 2021, the number of people self-reporting symptoms of long COVID has increased from an estimated 79,000 to 175,000 people in Scotland (3.3% of the population).
Is long COVID considered a disability?
A person is disabled under the UK’s Equality Act 2010 if they have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ adverse effect on their ability to do normal day-to-day activities. Only three conditions are specifically included in the Act: cancer, multiple sclerosis and HIV infection. If long COVID has this effect on an individual they would meet the definition of disability in terms of the Equality Act 2010.
The Equality Act 2010, in the main, is reserved under Schedule 5 of the Scotland Act 1998 but there are some exceptions. These are the encouragement of equal opportunities, and the power to impose duties on Scottish public authorities to meet equal opportunities requirements.
What social security benefits might be available for people affected by long COVID?
People who have long COVID that affects their everyday life may be eligible for a number of benefits such as:
- Adult Disability Payment
- Attendance Allowance
- Universal Credit – limited capacity to work
- Child Disability Payment.
Carers of people who receive certain disability benefits may be eligible for [BL(4] Carer’s Allowance and Carer’s Allowance Supplement.
Who is most at risk from having long COVID?
As a proportion of the UK population, the prevalence of self-reported long COVID was greatest in people aged 35 to 69 years, females, people living in more deprived areas, those working in social care, those aged 16 years and over who were not working and not looking for work, and those with another activity-limiting health condition or disability.
How many children have long COVID?
The ONS estimates that 21,000 2 to 11 year olds have long COVID in the UK and 37,000 12 to 16 year olds are estimated to have long COVID. NHS England has established a specialist long COVID services for children and young people through 15 paediatric hubs.
What guidelines exist for the treatment of long COVID?
SIGN (the Scottish Intercollegiate Guidelines Network) in conjunction with NICE (the National Institute for Health and Care Excellence) has published a guideline on managing the long-term effects of COVID-19. This includes recommendations on assessment, investigation and referral, planning care, management, rehabilitation and research.
What is the Scottish Government’s policy on long COVID?
The Scottish Government published a paper on Scotland’s Long COVID Service in September 2021. This notes that its approach is based on four elements:
- supported self-management
- primary care and community-based support
- rehabilitation support
- secondary care investigation and support.
The Scottish Government has also established a National Strategic Network. This was established in March 2022 to provide national support to building the capacity, capability and co-ordination of health and social care services for people with long-term effects of COVID-19.
The Strategic Network structure is composed of:
- a strategic oversight board
- a steering group
- a clinical and subject matter expert group
- a service planning group
- a lived experience planning group.
The services available for people with long COVID in Scotland varies by health board. The Scottish Government said:
“funding has been made available to NHS Boards and partners to respond to the needs of people with long COVID in their areas. NHS Boards are using the resource to develop pathways which aim to support early intervention and improved co-ordination of support and services for people with long COVID. For example, many Boards are introducing a single point of access for assessment and co-ordinated support from services including physiotherapy, occupational therapy and psychology, depending on what is most appropriate for a person’s needs.”
What funding is available for long COVID services in Scotland?
The Scottish Government has announced a £10 million Long COVID Support Fund, of which £3 million has been made available to the following NHS Boards and organisations. The Scottish Government has said that the long COVID Support Fund will be allocated and spent over the three financial years (2022-23, 2023-24, 2024- 25).
The Scottish Government has provided information to the COVID-19 Recovery Committee on what this funding has been used for. The Committee also wrote to all territorial NHS Boards for information on the long COVID services they provide. The Scottish Government has provided information to the COVID-19 Recovery Committee on what this funding has been used for. The Committee also wrote to all territorial NHS Boards for information on the long COVID services they provide.
Funding amount made available (£)
NHS Ayrshire and Arran
NHS Dumfries & Galloway
NHS Forth Valley
NHS Greater Glasgow and Clyde
NHS Western Isles
NHS National Services Scotland
Source: Scottish Parliament
How are other countries addressing long COVID?
The NICE guideline on managing the long-term effects of COVID-19 applies across the UK. However, there has been some variation in how services for long COVID have been organised. In England the NHS has established 90 post COVID assessment services clinics. These are intended to provide access to specialist diagnosis, treatment and rehabilitation. Guidance was published in July 2022 to inform the commissioning of post COVID services in England, alongside the NHS plan for improving long COVID services. A similar approach has been taken in Northern Ireland. In Wales, as in Scotland, support is provided within the wider NHS services through local health boards. The NHS Wales Respiratory Health Group has developed a long COVID Recovery App as part of the wider support available for people experiencing the longer-term effects of COVID-19.
What research into long COVID is taking place in Scotland?
The Chief Scientist Office’s launched a funding call for applications which aimed to investigate the longer-term effects of COVID-19. Applications were invited for Scottish-led applied research proposals, designed to improve understanding of the longer-term effects of COVID-19 infection on physical and mental health and wellbeing in Scotland, and/or research with the aim of developing effective clinical interventions to support recovery and rehabilitation from COVID-19 infection. Nine projects received funding and are currently taking place. Further information on each of these is available on the Chief Scientist’s Office website.
What work has the Scottish Parliament undertaken on long COVID?
The COVID-19 Recovery Committee is undertaking an inquiry into long COVID. The Committee plans to scrutinise what action the Scottish Government is taking to address long COVID and post COVID syndrome. It is focusing on:
- awareness and recognition
- therapy and rehabilitation
- study and research.
Long COVID has also been discussed in the Scottish Parliament on a number of occasions:
- Scottish Government debate on long COVID- Thursday 19 May 2022
- Members’ Business debate on long COVID as a condition of concern – Tuesday 09 November 2021
There is also a cross-party group on long COVID.
“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”.
How can I get involved in the work of the COVID-19 Recovery Committee?
The COVID-19 Recovery Committee has launched an open call for views which closes on Friday, 10 February 2023. You can let the Committee know your views and read other submissions.
How can I access help for long COVID?
NHS inform has information on long COVID. This notes that some people can carry on their day-to-day life managing long COVID symptoms themselves. Others may need further help from a healthcare professional, such as their primary care team and in some cases people may be referred for more specialist advice.
Lizzy Burgess, Senior Researcher, Health and Social Care, SPICe