Long COVID: what support is available?

Long COVID is a term used to describe the effects of COVID-19 in the weeks and months following the initial infection. National Institute for Health and Care Excellence (NICE) guidance states that long COVID is defined by symptoms lingering for more than 12 weeks after diagnosis.

We currently don't know why some people experience long COVID and others don't, but research suggests one in five people with coronavirus develop longer-term symptoms. On 18th February, a major £2.2 million research project was announced which will look to improve treatment and understanding of long COVID that will prove vital as more people are affected.

Dr Rajeev Dhar, consultant psychiatrist at the newly launched long COVID clinic at Cromwell Hospital, and Alice Bruce, clinical head of rehabilitation services and respiratory physiotherapist at CHD Living's Kingston Rehabilitation Centre, explain what support is available for those diagnosed.

Know the signs

As you might expect, many of the symptoms are very similar to the symptoms you'd first experience with COVID-19.

People with long COVID may experience fatigue, breathlessness, pain in the chest, joints or muscles, and a persistent cough, though this will vary from person to person.

"While most symptoms are physical, long COVID also has a lasting effect on mental health too, with many patients reporting anxiety, depression and problems sleeping since having the virus," Dr Dhar says. "Elsewhere, people have described experiencing brain fog, bringing problems with concentration and memory."

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Long COVID

Specialist centres

As more people are diagnosed with long COVID, NICE has recommended that COVID assessment clinics be set up to support those with continuing symptoms.

"This allows those with symptoms to access a multidisciplinary team inclusive of physiotherapists, respiratory consultants, occupational therapists and health psychologists for assessment and advice," Bruce says.

Dr Dhar explains that his team at the Cromwell Hospital clinic are creating individual treatment plans based on patients' needs.

"These include support for physical symptoms, such as respiratory, muscle or joint pains and palpitations, and mental health implications including insomnia, anxiety and depression. We're also able to refer a patient for further investigations within the hospital where necessary," he says.

NHS support

The NHS is also beginning to offer recovery classes focusing on managing breathlessness, fatigue and anxiety. Similar services are also available in private practices.

In December 2020 NHS England announced the opening of 69 specialist sites to support patients with long COVID. The assessment centres take referrals from GPs for people experiencing symptoms.

As well as doctors and nurses, the multidisciplinary teams at these centres have physiotherapists and occupational therapists and can offer both physical and psychological assessments. Patients can then be referred to the right treatment and rehabilitation services.

Ten sites are available in London, seven in the East of England, eight in the Midlands, South East and South West respectively, nine in the North West and a further 18 across the North East and Yorkshire.

A further 12 sites launched in January in the East Midlands, Lancashire, Cornwall and the Isle of Wight. A full list of the specialist assessment centres can be found on the NHS England website.

Unfortunately, given the number of people affected, there are still far more patients needing help than services available to them. This means waiting times may be long and some patients may find the services aren't currently accessible to them.

Home sweet home

While specialist centres are open to treat the effects of long COVID, it's also a good idea to understand the steps you can take at home to manage the symptoms.

"There are many ways in which individuals can self-manage post-COVID symptoms. This can include paying attention to their own general health, eating a nutritionally balanced diet with plenty of fluid, and allowing time for rest and recovery," Bruce says.

"Self-pacing and gradually increasing exercise will improve cardiovascular fitness whilst also having a positive impact on mental health and feelings of well-being. Other strategies such as mindfulness, meditation and mental health apps can help manage anxiety and stress."

It's advice Dr Dhar echoes. He suggests taking things at your own pace as it may not be easy or even feasible to go back to a fast-paced lifestyle such as a full-time job.

Instead, it's best to aim to do things in a more manageable way to ensure you don't exhaust yourself.

Don't push yourself

"Make sure you're doing some physical activity. Whether this is a walk around the block or simply stretching, making sure you have exercise in your routine will help maintain and build up strength in your muscles," he adds. "Once you feel happy to, gradually build up the length and intensity of your exercise regime."

Exercise can also help boost your mood and help manage mental health concerns associated with long COVID, he adds.

But it's important not to push yourself - if you are feeling exhausted or out of breath, try scaling back your exercise for a while until you feel comfortable building it back up.

There are also online forums where people with similar conditions can talk and offer support for each other, such as Long COVID Support.

For more information or support with recovery from coronavirus, NHS England has an online support service called Your COVID Recovery. It's important to know that some patient groups have criticised the site for offering 'one size fits all' advice which is not suitable for everyone, particularly those with very severe symptoms. But they do try to encourage people to set their own targets, using the mantra 'Pace, Plan and Prioritise'.

On the job

Many people diagnosed with long COVID will naturally be worried about their job, particularly if they feel too ill to go back to work full-time (or at all).

Dr Dhar and Bruce both suggest employers need to be flexible, provide access to remote services for mental health and well-being, and reduce pressure on employees who have been diagnosed.

"Employers need to be mindful that a proportion of those will experience ongoing symptoms post the acute phase of COVID-19. This may last a few weeks to months and the symptoms will be different for each individual," Bruce says.

"Employers need to ensure that there are individualised plans for those returning or thinking of returning to work. Access to a flexible working pattern and a phased return to work may be beneficial for individuals while also encouraging and offering access to health and well-being opportunities."