Long-COVID and children: what you need to know and the dedicated support on offer

Some children with mild COVID can struggle with persistent symptoms for months and the NHS has responded by setting up a dedicated network of clinics and hubs

While acute infections in children do tend to be milder, there is emerging evidence that, like adults, children are at risk of long-COVID.

In response, NHS England has announced it is setting up a dedicated network of long-COVID clinics and hubs for children.

What is long-COVID in children?

Research is still ongoing to determine how children are affected by long-COVID. The National Institute for Health Research (NIHR) review of long-COVID says it appears to be more common than might have been expected given the risk to mortality the virus presents.

As with adults, there appears to be a range of different syndromes grouped under the long-COVID term. This includes ongoing problems for children who have been severely ill in hospital, including those who developed paediatric multisystem inflammatory syndrome.

• RELATED: Paediatric multisystem inflammatory syndrome: what nurses need to know

But the NIHR review says there is also growing evidence that children who had mild COVID-19 illness were still struggling with persistent symptoms for months afterwards.

There are a wide variety of symptoms being reported, including:

• Tiredness
• Weakness
• Headaches
• Abdominal pain
• Muscle and joint pain
• Rashes
• Gastrointestinal problems
• Difficulty concentrating

How common is long-COVID?

The most widely quoted data is published by the Office for National Statistics (ONS). This relies on self-reported evidence supplied by children and their parents.

The ONS estimates about 33,000 of under 16s and 71,000 of 17 to 24 year olds are living with long-COVID. For more than one third it is not thought to have a limiting effect on their daily life, but some have been struggling with the symptoms for more than a year.

However, other studies have suggested the burden is lower. A King’s College London-led study looking at 1,734 children aged five to 17 who had tested positive for COVID-19 and were followed up found 1.8% of children experienced symptoms beyond two months.

They also monitored children who had not been infected to gauge the level of persistent similar symptoms in the general population and found 0.9% had ongoing symptoms similar to long-COIVD.

What is the experience of nurses?

The numbers coming forward for help seem to be low. Research by Oxford University and the London School of Hygiene and Tropical Medicine found that very few children and young people have been registered as having long-COVID at GP practices.

Just 342 under-18s were formally recorded as having a long-COVID diagnosis, with another 861 18 to 24-year-olds between February 2020 and April 2021.

Researchers describe the findings as ‘very surprising’ given the ONS data on prevalence and suggest it is possible people are not seeking help or healthcare professionals are not recognising the condition.

Nurse practitioner and Primary Care Respiratory Society executive chair Carol Stonham says it is clear primary care staff are only seeing ‘small numbers’ at the moment.

• RELATED: COVID-19: how it is affecting children and what nurses can do to help

But, she says, even when they do come forward, the services available for long-COVID may not be suitable or appropriate for children and young people – the dedicated clinics that have been set up so far are for adults.

‘Children who are affected need and deserve assessment and treatment that is tailored for them with specialist staff available to deliver it,’ adds Ms Stonham.

How will the long-COVID clinics work?

NHS England announced in June that a network of 15 long-COVID clinical hubs for children will be set up.

This builds on the work already under way to establish 80 clinics for adults in England, with similar services also being set up in the other UK nations. It is likely to be several months before the hubs are fully up and running.

Some will be integrated with the existing adult clinics, while others will be stand-alone – leading children’s hospitals, including Alder Hey, Liverpool and the Royal, Manchester, are among the sites chosen.

The clinics, like the adult ones, will be multidisciplinary, including paediatricians, consultant nurses, physios and occupational therapists. They will also be able to refer on to specialist hospital teams if necessary. The expectation is they will deal with the most complicated cases and provide advice to GP practices and community teams where necessary.

• RELATED: COVID-19: the challenges for children's nurses

There will also be investment in the Your COVID Recovery website, which healthcare professionals can direct patients to for self-care.

Sammie Mcfarland, founder of the support group Long Covid Kids, says the new clinics for children are much needed: ‘There are so many families who cannot get help. The clinics will be vital, but there also needs to be greater awareness and training for staff in the community.

‘There’s too much focus on fatigue. It’s important to consider the other symptoms and recognise this can be a relapsing and remitting condition – don’t just discharge children because they seem better.

‘We find that many children seem to recover from the infection, but then develop symptoms four to six weeks after. But it can be so different for each individual.’

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

Find out more

• British Journal of General Practice (2021) Clinical Coding of long COVID in English Primary Care: a Federated Analysis of 58 Million Patient Records in Situ Using OpenSAFELY
• King’s College London (2020) New Research Identifies Those Most at Risk From ‘Long COVID'
• Long Covid Kids
• National Institute for Health Research (2021) Living with Covid19 – Second Review
• NHS England (2021) NHS Sets Up Specialist Young People’s Services in £100 million long COVID Care Expansion
• NHS – Your COVID Recovery: Supporting Your Recovery After COVID-19
• Office for National Statistics (2021) Prevalence of Ongoing Symptoms Following Coronavirus (COVID-19) Infection in the UK: 1 July 2021

Nick Evans is a health journalist