On 15 June 2021 NHS England and NHS Improvement (2021a) published Long COVID: The NHS plan for 2021/22, which seeks to build on the previous NHS England and NHS Improvement (2020) five-point plan for long COVID support.
This is a timely publication as the decision to end England's remaining COVID-19 restrictions on 19 July 2021 was highly controversial because cases of the Delta variant have continued to surge around the country. This has given rise to fears that the pandemic might continue to accelerate, leading to a significant rise in the number of people left with symptoms of long COVID (also known as post-COVID-19 syndrome) (Sample, 2021).
Del Rio et al (2020) reported that, by the end of the first year of the COVID-19 pandemic, there were some 30 million-plus documented infections, with 1 million deaths worldwide. Since then the pandemic has continued to infect and kill people on a scale not seen since the early 20th century pandemic caused by Spanish flu. As the COVID-19 pandemic continues, the experiences of those people infected by the virus range from asymptomatic infection through to life-threatening illness requiring intensive care interventions and fatal disease. Current estimates are that approximately 20 million people globally have recovered from the infection, but there are concerns that the number of people who have lingering and long-term persistent and severe symptoms following infection, now known as long COVID, is increasing (Del Rio et al, 2020).
The latest figures from the Office for National Statistics (ONS) indicate that an estimated 945 000 people in the UK (1.46% of the population) were experiencing self-reported long COVID (symptoms persisting for more than 4 weeks after the first suspected coronavirus infection that were not explained by something else), at 4 July 2021 (ONS, 2021).
As the number of cases of long COVID begin to increase, further research will be needed on the health trajectory of people who are over the acute stage of the illness but are still recovering from the longer effects of COVID-19 (Yelin et al, 2020).
Background
In many respects the pathological morbidities associated with long COVID resemble those of myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). Some of the most common symptoms associated with ME, such as fatigue, confusion and memory loss, have also been reported by people who have not fully recovered from coronavirus (Smith, 2021).
Some of the symptoms associated with long COVID include (Centers for Disease Control and Prevention (CDC), 2021):
- Dyspnoea exacerbated by effort
- Tiredness or fatigue
- Difficulty thinking or concentrating
- Chest or stomach pain
- Headache
- Heart palpitations
- Joint or muscle pain
- Insomnia
- Dizziness on standing (light-headedness)
- Mood changes
- Changes in smell or taste
- Changes in the menstrual cycle.
Some people experience more complicated multi-organ pathologies, including autoimmune responses and ongoing lung-related complications (CDC, 2021).
People who were not hospitalised with COVID-19 are also susceptible to long COVID. Health staff may also be affected, thus compromising even further the precarious NHS staffing levels.
In October 2020 the National Institute for Health Research (NIHR) concluded that ongoing COVID may comprise several syndromes, and that it can potentially affect anyone who has been infected with the virus (NIHR, 2020; Trueland, 2021).
Researchers from Imperial College London have been analysing blood samples from long COVID sufferers and have detected irregularities in these specimens, which potentially could lead to the development of a screening test for the condition (BBC Panorama Reporting Team, 2021).
It is not only adults who may suffer from long COVID. Thomson (2021) reported that nearly half of children who contract COVID-19 may endure lasting symptoms. It is already clear that children and young people are susceptible to changes in their mental health caused directly or indirectly by the ongoing COVID-19 pandemic. The physical effects of long COVID, coupled with negative mental health sequalae, are only going to exacerbate the problems being experienced by this group.
Undoubtedly, children in many countries have been affected directly or indirectly by sustained lockdowns, which have adversely impacted on their education and social interactions with other children, with the potential for lifelong impacts on mental and physical health (Munblit et al, 2021).
Long COVID: the NHS plan
Regardless of the severity of the initial illness, it is now apparent that people of any age, including children and young people, can develop long COVID following COVID-19 infection. This includes both ongoing symptomatic COVID-19 symptoms 5 to 12 weeks after the onset of the illness and long COVID, which has been defined as occurring from 12 weeks or more after infection and may involve a wide range of different symptoms that affect physical, psychological and cognitive health. This in turn adversely affects quality of life and the ability of the individual to work or attend education. The physical, emotional, social and financial costs of long COVID may prove to be incalculable.
The initial five-point plan (NHS England and NHS Improvement, 2020) involved:
- Providing advice for clinicians and patients through the National Institute for Health and Care Excellence (NICE) guidance on managing the long-term effects of COVID-19 (NICE et al, 2020)
- Providing post-COVID assessment clinics to offer specialist physical, cognitive or psychological assessment
- Establishing a COVID recovery website (https://www.yourcovidrecovery.nhs.uk/)
- Enhancing research on COVID-19 by promoting work with the NIHR and committing £50 million to fund it
- Establishing an NHS Long COVID Taskforce, which involves people with lived experience of long COVID, NHS staff and researchers (NHS England and NHS Improvement, 2021b).
These five steps have provided the foundations on which an additional 10 key steps are planned, funded by £100 million that the NHS has committed for 2021/2022. These further 10 steps are in recognition that long COVID is likely to become a serious health issue (NHS England and NHS Improvement, 2021a). The 10 steps involve:
- Earmarking £70 million of this funding to expand existing long COVID services. This is on top of the £24 million that has already been spent on post-COVID assessment clinics. NHS England and NHS Improvement expects each local NHS provider to have submitted fully staffed long COVID service plans, covering the whole pathway from primary and community management through to specialist care. These plans must include children's services and mental health services. To underpin planning a detailed long COVID clinical pathway has been developed (NHS England and NHS Improvement, 2021c)
- Providing the remaining £30 million to fund the rollout of an enhanced service for general practice to support long COVID patients in primary care. This will also facilitate improved referrals to long COVID assessment clinics for specialist evaluation and further treatment as required. Some of this funding available to general practice will support professional education
- Facilitating improved care co-ordination by the appointment of care co-ordinators who will support the running of post-COVID assessment clinics with the aim of providing multiprofessional joined-up care
- Establishing 15 paediatric post-COVID assessment children and young people's care hubs across England. This will help to co-ordinate care across a range of services and help in providing direct assessment services
- Requiring health organisations across the NHS to develop standard rehabilitation pathway packages to treat the most common symptoms of long COVID
- Extending the use of the ‘Your COVID Recovery’ online rehabilitation platform to support those with long COVID to manage and monitor their symptoms remotely where appropriate
- Collecting data on a monthly basis from September 2021 to support the operational performance of services in addition to clinical and research activities to better understand the post-COVID patient journey
- Expediting the use of data tools to track take up of services by gender, ethnicity and deprivation, against expected prevalence
- Promoting optimum clinical practice through the establishment of a national learning network on long COVID for health professionals, including a network for nurses in community and acute care. To enhance this a site has been developed on the Future NHS platform to provide educational materials and enable information sharing across healthcare organisations and staff (https://future.nhs.uk/)
- Providing packages of comprehensive support for NHS staff health and wellbeing.
Conclusion
This latest policy recognises the complexities of long COVID as a multi-system condition with a wide range of debilitating symptoms. In addition to the physical aspects, this ongoing syndrome can be the cause of both psychological and cognitive symptoms. These can have a significant impact on a person's ability to carry out day-to-day activities and to work and it is hoped that this new policy will be fully implemented and sustained.
KEY POINTS
- NHS England and NHS Improvement has published a plan that seeks to address the healthcare issues that may follow COVID-19 infection
- Long COVID can be a complex, multi-system disease requiring multi-professional joined up care linked to patients' clinical needs
- To underpin planning NHS England and NHS Improvement has developed a detailed long COVID clinical pathway