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Long COVID

What is Long COVID?

Long COVID is a term which includes both ongoing COVID symptoms and new symptoms which develop as a result of COVID-19 infection.

When the symptoms of COVID have not resolved or new symptoms have persisted beyond 12 weeks of initial infection, then it may be classed as Long COVID if all other medical reasons for the symptoms have been excluded or unlikely.

What are the symptoms of Long COVID?

There are many symptoms of Long COVID – the most commonly reported symptoms are:

  • Fatigue
  • Problems with memory or concentration (known as brain fog)
  • Muscle and joint pains
  • Breathlessness
  • Difficulty sleeping
  • Chest pain
  • Heart palpitations
  • Dizziness
  • Loss of taste and / or smell
  • Pins and needles or numbness
  • Rashes
  • Depression and anxiety
  • Feeling sick, diarrhoea, stomach aches, loss of appetite

At the moment there is no ‘cure’ for Long COVID, however, addressing and treating the symptoms can help manage them and improve quality of life.
Small lifestyle changes can often lead to improvements in the condition.

How to manage the symptoms of Long COVID

For many people with Long COVID, strategies and lifestyle changes help manage their symptoms. In time, many people feel that they have recovered from Long COVID without any additional assistance.

Below are some self management resources / links.

Long COVID Advice

The following pages have advice on the management of Long COVID and the symptoms and support for managing the condition.

Support groups

Fatigue

Fatigue is the most frequently reported symptom of Long COVID. There are some strategies which can help manage your energy – different ones work for different people. You may wish to try one at a time. The RCOT website has some practical ways to use the “5Ps” to manage your energy.

Sleep

Sleep is important for replenishing energy levels and repairing the body. Many people with Long COVID feel that their ability to sleep and their sleep quality have got worse since COVID. The following pages help with advice and support to improve your sleep.

Cognition (Brain Fog)

Brain fog is the term coined for those with memory and attention impairments. It is one of the most frequently reported symptoms of Long COVID and impacts on many daily activities. The following pages can give some helpful tips on how to manage these problems and ways to improve your memory and attention gradually.

Breathlessness

Breathlessness has been one of the main symptoms of Long COVID and is often not caused by any damage to the lungs or respiratory systems.

Many people with Long COVID do not have any abnormality shown on x-ray or CT, but have debilitating symptoms of breathlessness.

The following pages have exercises and advice to improve the efficiency of your breathing if you have “dysfunctional breathing” or a “breathing pattern disorder”.

The breathing exercises may also be helpful if you have been diagnosed with anxiety, asthma or COPD, as an adjunct to medical management. There are also sections on cough management.

Mental Health

Your mental health is as important as your physical health – while you are recovering from COVID or living with the ongoing symptoms, it is understandable that many people feel a decline in their mental health.

It is important to address these issues to prevent worsening, and there are many ways to self-manage milder symptoms.

If your symptoms are worsening or you no longer feel that you can keep yourself or others safe, then please contact your GP or call NHS24 on 111 or 999 depending on the severity.

Work

Those with Long COVID often struggle to return to work, study or unpaid work. The following webpages offer support and advice about how to plan your return to work, what to do if you have not been treated fairly by your employer and where to turn if you are exiting work or seeking new employment.

  • ACAS – free, impartial advice on workplace rights, rules and best practice
  • Access to Work – Government based agency offering support to those with a disability
  • Jobcentre – Support and advice on benefits and employability
  • Action for ME – a useful leaflet with advise and working examples for returning and remaining at work.
  • The Advocacy Project – human rights based organisation that supports people to have their voices heard and be empowered to be involved in decisions that affect their lives
  • The Federation of Small Businesses – for those self employed or running smaller businesses – advice, financial expertise, support and a powerful voice heard in government
  • Govan Law Centre – a free legal resource – a charity challenging poverty, discrimination and disadvantage. They specialise in housing, landlord and tenant, homelessness, welfare rights, money advice, social services, consumer and debt
  • Wellness Action Plan (MIND) – an example of a plan which can be useful for maintaining or returning to work.
Financial Advice

People living with Long term conditions often need to reduce their working hours or stop working to manage their condition. This may inevitably have an impact on their finances. The following pages may be able to help and guide you to money management or signpost you to grant or benefits to help.

  • Support and Information Services (NHSGGC) – a service within the NHSGGC who can advise on financial, social, educational, lifestyle issues and support groups and guiding through the complaints process.
  • Citizens Advice Scotland – help for benefits, debt and money, housing, work, family, law and courts and immigration for those living in Scotland.
  • Money Matters – a Welfare Rights Service, financial capability service based in Glasgow.
  • VoiceAbility – support for those with Long Term Conditions – eg – advice for applying for Adult Disability Payment / ADP (previously known as Personal Independence Payment / PIP)
Palpitations / Dizziness

Some people with Long COVID have been experiencing palpitations – a sensation of fast or inconsistent heart beats in their chests or dizziness. In some cases this is cardiac related, but many have been medically assessed and the symptom is not due to any damage to the heart.

If you have this symptom and cardiac cause has been ruled out then this may be classed as dysautonomia. This is a condition which many people have and can be managed with the right advice and treatment.

Activity, Movement and Exercise

With Long COVID, you may find that you struggle with the minimal amount of activity due to fatigue.

If you are at a level where you can manage your activities of daily living without a set back in your symptoms then you may be ready to consider gradually introducing some additional activities.

Please ensure you are not pushing beyond what your energy levels are tolerating and allow for at least 3 days after introducing a new activity before repeating or progressing, especially if you have Post exertional Symptom Exacerbation (PESE, also known as PEM). .

Consider what you have planned before and after the new activity and ensure you are using a paced approach (see fatigue section regarding the 5Ps).

Please stop or reduce what you are doing if your symptoms are worsening and re-evaluate if you are ready to be more active.

The following links will provide you with some ideas for introducing a new activity or exercise:

Planning for the Future

The following pages will signpost you to templates you may use for managing your long term condition

  • WRAP – wellness action plan, an example of a plan which can be useful for managing your condition
  • Work WRAP – Longer version of the above WRAP with sections more relevant to work
Sensory Issues

For reduced or loss of sense of smell there are charities which support and sell packs to rehabilitate the sense of smell

  • For people with noise sensitivity after COVID, many have found that noise Reducing earplugs helpful.
  • Visual decline – please refer to your local opticians
  • Visual sensitivity – some have found that wearing coloured glasses lenses relieving, or wearing a cap to be helpful to shade the light from above.
Neurodiversity

These pages have adapted fatigue strategies for those who are neurodivergent (eg – Autism or ADHD).

If Long COVID symptoms are not improving with self-management within 12 weeks of using the strategies or if you are struggling to manage them, then your GP may refer you to the Long COVID Service (assuming they have excluded any other medical reason for your symptoms.)

The Long COVID Service

The Long COVID Service is led by Occupational Therapists, Physiotherapists and Healthcare Support Workers.

We offer Long COVID assessment and management.​

There are no doctors in the team and we are unable to prescribe medication or advice on treatments which are not evidence based or experimental.

The SIGN guidelines are listed here with evidence based, safe treatment options.

We aim to offer advice and coping skills, helping you to set goals to work towards.​

  • Fatigue management
  • Sleep advice
  • Breathing assessment and treatment
  • Cognitive strategies to address brain fog
  • Mental health and wellbeing advice
  • Physiotherapy assessment for muscle or joint pains
  • Advice for returning to work / study, recommendations for employers
  • Goal setting to return to work / study / hobbies
  • Assessment for assistive adaptations
  • Financial advice
  • Carer advice
  • Group sessions for peer support

The service is for:

  • Any adult who is living with Long COVID (having symptoms for 12 weeks or more)
  • The service will only be for those over the age of 16
  • People who are not acutely medically ill
  • People who are physically, psychologically or mentally impacted by their long COVID symptoms
  • People who are able to learn ways to manage their condition using Supported Self Management approaches

What will the service offer?

  • Help to improve, manage and live with Long COVID symptoms using a Supported Self Management Approach
  • Appointments in a way that suit people by video, telephone or in person at a clinic or home appointments
  • Time limited individual or group interventions
  • Support, treatment and strategies to help improve quality of life
  • Direct you to tools to help manage your condition
Information for referrers / GPs

Direct referrals will be accepted from GPs, Specialty Consultants and AHPs

GPs please refer via SCI.

AHPs and consultants can refer using this document if there is no access to SCI gateway:

Please ensure that patients meet the criteria:

Inclusion criteria

  • 12 weeks symptoms persist following initial confirmed (PCR or LFT) or probable COVID-19 (decision made on best clinical judgement).
  • Patients who had a prolonged hospital stay due to COVID-19.
  • Patients who did not require hospital admission but have persistent or new COVID-19 symptoms 12 weeks post initial infection.
  • Patients with ongoing respiratory, neurological, functional, psychological or cognitive issues caused by COVID-19 disease 12 weeks post initial infection
  • Any other possible reasons for symptoms have been appropriately investigated

Exclusion criteria

  • Symptoms lasting less than 12 weeks.
  • Patients with suspected or confirmed active COVID-19.
  • Other medical conditions that may present with similar symptoms i.e. symptoms that are not Long COVID.
  • Patients with co-existent active cancer that would be best managed by the cancer pathway.
  • Patients with severe frailty.
  • Patients in the end of life period.
  • Patients with palliative care needs.
  • Patients who are in mental health crisis.
  • Patients living outside NHSGGC boundary

May be discussed

  • Patient is resident in a nursing home.
  • Ongoing medical investigations for other conditions.
  • Patient is receiving long term oxygen therapy.
  • Patients needs are being met elsewhere (eg community respiratory team).
Information for patients

Please speak to your GP if you think this service could help you.

If you meet the criteria then your GP can refer you directly and you will receive a questionnaire by text, email or by post to complete once you reach the top of the waiting list.

Please read the following before attending for the first time:

Information for Group Participants

Below you will find presentations and resources relating to the Long COVID group sessions.

The “notes” section of the PowerPoint presentations has a script for each session.

Session 1 – Introduction

Session 2 – Post COVID Dysautonomia

Session 3 – Fatigue (Part 1)

Session 4 – The Breath

Session 5 – Brain Fog

Session 6 – Fatigue (Part 2) and Sleep

Session 7 – Wellbeing

Session 8 – Planning for the Future