Long-COVID: the range of symptoms and how to help your patients

Understand the long-term implications for individuals and nursing care, and the services available to help people struggling weeks after the acute COVID-19 phase

• One in ten people still experience symptoms 12 weeks after a positive COVID-19 test
• A network of 69 clinics is being set up across England to help support people with long-COVID symptoms
• Community and district nurses report increasing caseloads of newly discharged patients, including older people with complex needs

COVID-19 has left devastation in its wake, not only in terms of the number of people who have died, but also those who have survived and are experiencing the lasting effects of the virus.

Millions have been infected and, while most have recovered, significant numbers are living with long-COVID.

What is long-COVID?

The National Institute for Health and Care Excellence (NICE) defines long-COVID as the continuation or development of symptoms after the four-week acute stage of COVID-19.

Long-COVID is an umbrella term that covers symptoms including brain fog, anxiety, depression, breathlessness and chronic fatigue. Symptoms can be wide-ranging and varied and for some patients can fluctuate, with periods of remission and relapse. The development of long-COVID is not thought to be linked to severity of disease in the acute stage.

The Office for National Statistics (ONS) estimates that one in five people continue to experience symptoms for five weeks or longer after a positive COVID-19 test, while for one in ten it lasts longer than 12 weeks.

Significant numbers of those who are discharged from hospital can have lasting severe illnesses, found a study by clinicians at the Royal Free London and University College London Hospitals NHS Trust.

The ONS data, which looked at 47,780 people hospitalised with COVID-19 and discharged up until the end of August 2020, also shows nearly one third were readmitted within five months of discharge. Some 12% of the 47,780 people died.

Establishing a network of long-COVID clinics

A network of 69 clinics is being set up across England to support people with symptoms that persist past 12 weeks.

The clinics will offer physical, cognitive and psychological assessments to patients and will incorporate support from multidisciplinary teams.

A variety of different models have been established. Some are led by community teams of allied health professionals, while others are hospital based (see box below).

In the early stages of the set up, doctors will lead the hospital-based clinics and physiotherapists and occupational health therapists those in the community. At some services nurses will act as key workers or case managers.

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Long-COVID clinics: how the different services operate

The hospital model

University College London Hospital was one of the first trusts to establish a long-COVID clinic, with its respiratory medicine team setting one up in May 2020.

There are now two more clinics – one led by neurologists and one by ear, nose and throat specialists, focusing on people who have lost their sense of taste and smell.

Referrals can be made by GP practices, with follow-up provided for hospital patients. The clinics have access to a range of specialists, including physiotherapists, psychologists and cardiologists, and can arrange tests and scans.

Patients get ongoing support face-to-face or via telephone or video calls. The trust says it received around 40 referrals a week by January 2021.

The community-led model

A long-COVID service has been set up across Hampshire and the Isle of Wight in a partnership between Solent, Southern Health and the Isle of Wight NHS trusts.

The region is split into six services – three covering Southampton, Portsmouth and the Isle of Wight, and three across the rest of the county.

Occupational therapists and physiotherapists lead the services and can refer on to the respiratory medicine teams at local hospitals for examination if needed.

The service started in January 2021. The therapists have been concentrating on rehab support, but are able to work with mental health services and community nursing teams for wider help.

Southern Health deputy director of allied health professionals Susanna Preedy, who helped set up the service, says: ‘Our clinics have been set up on the basis that we can pull in expertise from others where needed.

‘A lot of the patients referred so far are relatively young, but as we go on we are going to be supporting patients who have underlying health conditions and the help of community nurses will be vital.’

The integrated model

The Oxford University Hospitals NHS Foundation Trust and the community Oxford Health NHS Foundation Trust jointly provide the long-COVID service in Oxford.

Therapists and doctors from the trusts work together in the service, triaging patients and arranging support. Tests such as CT scans and echocardiograms are ordered where needed, and patients can be assigned to respiratory, neurological and cardiology clinics at the hospital, or provided with support from physiotherapists and psychologists in the community.

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The service receives around 20-30 referrals from GPs each week and will provide follow-up for 300 patients who have been treated in hospital.

The service does not employ any nurses at the moment, but says it is looking to recruit one to act as a case manager for those who need long-term support.

Role of community nursing teams in long-COVID care

Primary Care Respiratory Society executive chair Carol Stonham, who helped set up long-COVID clinics in the south west of England and is a general practice nurse by background, say the limited nursing involvement in clinics so far has been because of the focus on therapies.

‘We will see the clinics linking in with community nursing teams, particularly for patients who have long-term conditions or who are found to have undiagnosed long-term conditions.

‘The patients coming forward have been relatively young – mainly under 50.’

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Support and resources for patients before the 12-week point

But Ms Stonham says nurses are still at the forefront of dealing with the impact of long-COVID.

‘These clinics only kick-in at the 12-week point. General practice nurses are seeing patients recovering from COVID-19 who are struggling before then and there is a lot of discussion about what should be done for patients in this position. It hasn’t been made very clear.’

She says the NHS website Your COVID Recovery is a good resource to direct patients to for help with self-care, while nurses can signpost patients to local services, such as pulmonary rehabilitation or social prescribing.

‘Managing expectations is important,’ she says. ‘We know it will take time for some people to recover, but most will.’

‘Significant pressures’ for nurses in community settings

The Queen’s Nursing Institute (QNI) has produced a long-COVID resource for community and primary care nurses. It covers signs and symptoms, how to support patients and implications for people with pre-existing health conditions.

NICE has also published long-COVID guidance on supporting patients. It states that urgent referrals must be made where there is concern about severe lung disease, cardiac chest pain or oxygen desaturation.

‘With all the focus on hospitals and the number of patients there, we forget that community services have been seeing as many if not more people with COVID as hospitals’

Crystal Oldman, QNI chief executive

QNI chief executive Crystal Oldman believes nurses in the community need much more recognition for the role they are playing.

‘With all the focus on hospitals and the number of patients there, we forget that community services have been seeing as many if not more people with COVID as hospitals. District and community nurses and practice nurses are under significant pressure.’

She says district nursing services in particular have seen huge increases in demand.

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‘We know there are large numbers of people struggling with long-term symptoms. The long-COVID clinics are largely focused on younger patients, but there are lots of older patients who are struggling after discharge from hospital.’

RCN district nurse forum chair Julie Green agrees. She says services are facing twin challenges with those who are struggling following COVID-19 infection and those who deteriorated during lockdown.

‘Teams are already stretched with the pressures of delivering care to an increasingly frail older population with multiple long-term conditions. Add to this the huge pressures from the dependent, newly discharged patients and our teams will soon be unable to cope,’ Professor Green says.

‘It’s not just the amount of people, it is the complexity of the needs’

London-based district nurse Gail Goddard has worked as a community nurse for 30 years and says the pressures have never been so great.

She says caseloads have increased by 20-30% because of the number of older people struggling with the after-effects of COVID, as well as increased frailty as a result of a lack of support and care during the pandemic.

‘Many of these individuals were not already known to their local community teams. It’s not just the amount of people, it is the complexity of the needs,’ she says.

Ms Goddard says these complex needs include older patients with frailty who have become deconditioned, deskilled in self-care, bed-bound and require long-term support at home.

‘They do not necessarily all have symptoms or difficulties documented as associated with long-COVID, but they are unable to mobilise or care for themselves, have urinary catheters, incontinence and skin damage. They have not received rehabilitation and physiotherapy while in hospital, due to resources being redeployed.

‘We are all trying so hard, working extra hours and going without breaks rushing from one patient to the next, but it feels relentless,’ she adds.

District nursing services constantly reprioritising patients

In Scotland some health boards have set up their own COVID-19 recovery clinics, while in Northern Ireland the Whiteabbey Hospital runs a rehab unit.

But again, much of the work is still being done in the community, says Marysia Graffin, a district nursing sister in Northern Ireland.

She says nurses are facing unprecedented demand.

‘We see a high number of unscheduled visits, such as hospital discharges or patients becoming acutely unwell. The service we provide does not have a ceiling capacity level, therefore, teams are continuously required to reprioritise to ensure the most critical patients are seen.’

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Limited knowledge and understanding of long-COVID

Jane Ireson is a cancer nurse who experienced long-COVID and helped set up a website COVID-19 Recovery Collective for patients to share their experiences.

She says nurses have a vital role to play in advocating for patients, but understanding about long-COVID is still so limited and many patients have ‘little to show for it medically’.

‘It’s hard for our health and care system to cope and provide support, as long-COVID is not something that is easily understood, diagnosed or fixed by medicine. This uncertainty, alongside the debilitating and chronic nature of the complications, can undermine a patient’s sense of self-worth.

‘It’s important that patients are listened to and believed. This is where general practice and community nurses have the biggest responsibility. I hope in the future we will have more evidence and insight into what long-COVID is and how to treat it.’

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Further information

• NHS: Your COVID Recovery
• Queen’s Nursing Institute Long COVID resource
• National Institute for Health and Care Excellence: COVID-19 rapid guideline: managing the long-term effects of COVID-19
• COVID-19 Recovery Collective
• Office for National Statistics data on complications following discharge

Nick Evans is a health journalist