Table of contents

On 17 November 2022, the House of Lords is scheduled to debate the following motion:

Baroness Thornton (Labour) to move that this House takes note of the short- and long-term challenges presented by long Covid.

1.   What is long Covid?

Covid-19 is an infectious disease caused by the SARS-CoV-2 virus. The symptoms of Covid-19 are very similar to symptoms of other illnesses, such as colds and flu. Symptoms of the virus in adults can include a high temperature or shivering (chills), a new, continuous cough, and fatigue. Most people infected with Covid-19 tend to feel better within a few days or weeks of their first symptoms and make a full recovery from the virus within 12 weeks.

However, for others, symptoms can last longer. This has widely been referred to as long Covid. In November 2022, the National Institute for Health and Care Excellence (NICE) published guidance on managing the long-term effects of Covid. In its guidance, NICE recommended that healthcare professionals use the following clinical case definitions to identify and diagnose the long-term effects of Covid-19:

  • Acute Covid-19: signs and symptoms of Covid‑19 lasting for up to four weeks.
  • Ongoing symptomatic Covid-19: signs and symptoms of Covid‑19 lasting from four weeks up to 12 weeks.
  • Post-Covid-19 syndrome: signs and symptoms that develop during or after an infection consistent with Covid‑19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑Covid‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

NICE stated that the term ‘long Covid’ has been commonly used to describe signs and symptoms that continue or develop after acute Covid‑19. This includes both ongoing symptomatic Covid‑19 and post‑Covid‑19 syndrome. Some of the common symptoms of long Covid include fatigue, memory loss and trouble concentrating, insomnia, breathing difficulties, and pain.

On 3 November 2022, the Office for National Statistics (ONS) published its latest monthly estimates on the prevalence of self-reported long Covid and associated activity limitation. It estimated that 2.1 million people in the UK (3.3% of the population) had self-reported experiencing long Covid symptoms as of 1 October 2022. Of this total, an estimated 1.8 million people said that they first had or suspected that they had Covid at least 12 weeks previously.

2.   What challenges have been created by long Covid?

Long Covid has created many challenges. For those suffering with the condition, it can impact their health, wellbeing and employment status. This in turn impacts the demands placed on health services and the labour market.

2.1 Health and wellbeing

Long Covid has had a negative impact on people’s health and wellbeing. There is currently no evidence-based treatment for long Covid. Instead, clinical guidance focuses on symptom management.

In its latest estimates on the prevalence of ongoing symptoms following Covid-19 infection, published in November 2022, the ONS reported that long Covid symptoms had “adversely affected” the day-to-day activities of 1.6 million people (73% of those with self-reported long Covid). As part of this, the most common symptom reported as part of an individual’s experience of long Covid was fatigue (70%). This was followed by difficulty concentrating (45%), shortness of breath (42%) and muscle ache (42%).

The ONS has also produced estimates on the impact of long Covid on wellbeing. In July 2021, the ONS reported that 61% of people with self-reported symptoms of long Covid had stated that the Covid-19 pandemic had affected their wellbeing, compared to 41% of people who had not had Covid-19 who stated that the pandemic had affected their wellbeing.

Similarly, the ONS reported that personal wellbeing levels for those who had experienced long Covid were lower across all wellbeing indicators compared to those who either had short Covid or had not had Covid-19. This is measured in the form of four questions, using a scale of zero to ten (whereby zero is ‘not at all’ and ten is ‘completely’):

  • How anxious did you feel yesterday? 4.6 for those suffering from long Covid, compared to 3.8 who either had short Covid or had not had Covid-19
  • How happy did you feel yesterday? 6.5 for those suffering from long Covid, compared to 7.1 who either had short Covid or had not had Covid-19
  • How satisfied are you with your life nowadays? 6.4 for those suffering from long Covid, compared to 7.1 who either had short Covid or had not had Covid-19
  • To what extent do you feel that the things you do in your life are worthwhile? 6.9 for those suffering from long Covid, compared to 7.4 who either had short Covid or had not had Covid-19

Long Covid is presenting a new challenge for the healthcare sector. In May 2022, the National Institute for Health and Care Research (NIHR), the research arm of the NHS, published an article detailing its research into long Covid. The NIHR described long Covid as a “new disease with many unanswered questions”. It argued that this “uncertainty” had created “huge challenges for patients and clinicians”. This included the NHS having to “create services for this client group from scratch, while addressing the pandemic and mounting backlog of other work”.

Similarly, the British Medical Association (BMA) has said that long Covid has become an “important public health issue in the UK”. In August 2022, it stated that the condition represented a “new, significant challenge for the health system—one that is likely to be a driver of ill-health for years to come”. Therefore, the BMA stated that there needed to be “more action […] to meet the rising demand of people suffering with long Covid in the UK”. This included calling for:

  • detailed data collection on long Covid to help accurately measure, report and monitor the number of people living with the condition
  • increased funding for research and infrastructure
  • support for health professionals to identify and treat long Covid

2.2 Employment and the labour market

Data has shown that long Covid is also affecting people’s participation in the labour market. In July 2021, the ONS published its latest analyses on the social impact of long Covid on people’s lives in Great Britain. This included an analysis of how it had impacted people’s work. The ONS reported that 44% of those who had experienced long Covid had said that their work had been affected. This proportion varied by age group, with those aged between 30 and 49 the most affected (47%). This was followed by those aged 50 to 69 (46%) and 16 to 29 (38%). The proportion of people whose work was affected by long Covid also varied amongst other groups:

  • 48% of men with long Covid reported that it had affected their work, compared to 41% of women
  • 48% of disabled people with long Covid stated that it had impacted their work, compared to 43% of people who are not disabled

In November 2021, the Resolution Foundation published the results of its survey examining the impact of Covid-19 on the UK’s labour market. It reported that the results of the survey suggested that 600,000 adults had left the workforce or were working fewer hours since the pandemic began. The organisation said that this activity could be “linked to specific features of this crisis: long Covid, or fear of the virus”.

In July 2022, the Institute for Fiscal Studies (IFS) published its assessment into the impact of long Covid on labour market outcomes. In its assessment, the IFS examined how outcomes had changed since before the pandemic for those suffering from long Covid and similar individuals without the condition. It estimated that one in ten people who had developed long Covid had stopped working, with people generally going on sick leave rather than losing their jobs. As a result, the number of hours worked on average by those with long Covid reduced by approximately 2.5 hours per week and earnings fell by £65 per month, or £1,100 per person who “drops out of work”. Concluding, the IFS said that long Covid had shown some “persistent labour market effects”, with impacts being felt at least three months after infection. It argued that further research would be required to “precisely determine the duration of the impact [on the labour market]”.

3.   How have the government and the NHS responded to such challenges?

Boris Johnson’s government sought to address the short- and long-term challenges presented by long Covid by funding care for people with long Covid and research studies to better understand the condition. Additionally, the government has provided some financial support through certain existing benefits to people suffering from long Covid who meet relevant eligibility criteria.

3.1 Supporting NHS England to provide care for people with long Covid

In October 2020, NHS England announced a five-point plan to support long Covid patients. This included:

  • commissioning NICE to develop new guidance on the clinical definition of long Covid
  • creating the ‘Your Covid Recovery’ online rehabilitation service to provide personalised support for patients
  • establishing designated long Covid clinics to provide “joined up care for physical and mental health”
  • creating the NHS long Covid taskforce to guide the NHS’s “national approach on long Covid”
  • funding NIHR research on long Covid to better understand the condition

Responding to the launch of the plan, the then secretary of state for health and social care, Matt Hancock, said:

Long Covid can have a huge impact on people affected. So we are doing everything we can to support people who are still suffering with effects on their health […] Combined with further research and the new NHS England long Covid taskforce, these additional services will ensure people get the care they need, improve lives and aid in the fight against this global pandemic.

In July 2021, NHS England published its long Covid plan for 2021/22. The plan built on NHS England’s initial five-point plan and detailed ten actions for the NHS in 2021/22. These included:

  • investing £70mn to expand long Covid services and £30mn in the rollout of an enhanced service for general practice to support patients in primary care
  • extending usage of the ‘Your Covid Recovery’ platform
  • establishing 15 long Covid specialist children and young people’s hubs across England to “co-ordinate complex care and provide expert advice to local paediatric services”

In July 2022, NHS England published an updated plan for improving long Covid services. In the plan, NHS England stated that it had made “significant progress” against the actions proposed in the 2021/22 plan. This included:

  • Establishing 90 post-Covid services tasked with providing access to specialist diagnosis, treatment and rehabilitation. NHS England noted that £194mn had been invested in NHS services for people with long Covid since October 2020.
  • Allocating a further £30mn for an enhanced service that helps general practice support patients and “enable more consistent referrals to clinics for specialist assessment and treatment”. NHS England stated that over 93% of practices in England had signed up for the service, which had “significantly increased” the recording of people diagnosed with long Covid in general practice, from 1,540 to 3,720 clinical codes per week between June 2021 and March 2022.
  • Establishing 14 of the proposed 15 post-Covid specialist children and young people’s hubs across England.

However, there have been concerns over the number of patients with long Covid who have been assessed by an NHS specialist service. In October 2022, the Guardian examined NHS England’s data on the Covid-19 Post-Covid Assessment Service and reported that only 60,000 people suffering from long Covid had been assessed by an NHS specialist service between July 2021 and August 2022. Responding to the Guardian’s findings, Dr Helen Salisbury, a general practitioner and columnist for the British Medical Journal, said that “a fraction of the people who have got this problem are actually being seen”. She attributed this to several reasons, including patients not realising that help was available to them and general practitioners not recognising long Covid in those who had not self-labelled as having the condition. To tackle this, she stated that it was “really, really important” that patients received symptom management and psychological treatment.

Criticising the total number of people with long Covid that had been seen by an NHS specialist service, Ondine Sherwood, the co-founder of the charity Long Covid SOS, said that “there was a lack of preparedness for the potential long-term morbidity which was not conveyed to healthcare professionals”. She argued that this had “contributed to the lack of care for long Covid”.

3.2 Funding research studies into long Covid

Boris Johnson’s government invested £50mn towards research projects into long Covid. The majority of this (£38.3mn) was awarded to 19 projects commissioned through two research funding calls. In February 2021, the then government announced that four research studies, that would receive funding totalling £18.7mn, aimed to “better understand and address the longer-term effects of Covid on physical and mental health”. In July 2021, it announced that a further 15 new research studies would receive £19.6mn. These studies included the largest long Covid trial as of July 2021 and would involve over 4,500 people.

3.3  Financial support

At present, the Department for Work and Pensions offers financial support through existing benefits to those who have long Covid and are unable to work, should they meet certain criteria.

If a person with long Covid is employed, they may be eligible for statutory sick pay (SSP). To qualify for SSP, a person must: be classed as an employee and have done some work for their employer; earn an average of at least £123 per week; and have been ill for at least four days in a row (including non-workdays). If a person qualifies for SSP, they can receive £99.35 a week for up to 28 weeks (starting from the fourth day off sick).

If a person is not eligible or their SSP ends, they may be able to apply for:

In June 2022, the government said that the Industrial Injuries Advisory Council (IIAC)—which advises the Department for Work and Pensions about industrial injuries disablement benefit (IIDB)—was investigating whether long Covid could be “prescribed as an occupational disease for the purposes of IIDB”. It also said that it would “carefully consider” any recommendations that IIAC may make relating to Covid-19 and other prescribed diseases.

Despite these measures, some commentators have called on the government to improve the process for applying for financial aid. In April 2022, the Independent reported that 937 people with long Covid had successfully claimed PIP in January 2022. At the time of writing, the take up of SSP, universal credit and ESA by those suffering from long Covid has not been published.

Responding to the findings, the shadow secretary of state for work and pensions, Jonathan Ashworth, stated that the successful PIP applicants were “just the tip of the iceberg when it comes to those who need financial support to live with the condition”. Additionally, Jenny Ceolta-Smith of the organisation Long Covid Support, said that there were “barriers in place” when applying for the disability benefit. For example, she said that the assessment process for PIP failed to account for fluctuating symptoms associated with long Covid, stating that people “might be able to perform a one-off activity, but then not do so later in the day”.

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Cover image by Kateryna Hliznitsova on Unsplash.