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What is Long COVID?
COVID disease is an infection caused by a corona virus. Long COVID is a term to describe the effects of COVID-19 that continue for weeks or months beyond the initial illness. The health watchdog NICE defines Long COVID as lasting for more than 12 weeks.
Details of how some people are affected by Long COVID are still emerging, but research suggests around one in five people who test positive for COVID-19 have symptoms for five weeks or longer. For around one in ten people, they last 12 weeks or longer.
These long-term effects are often reported by people who didn’t need to go to hospital during the acute phase of COVID. Long COVID symptoms commonly experienced by patients include:
anxiety and depression
joint or muscle pain
not being able to think straight or focus (‘brain fog’)
loss of taste or sense of smell.
At our clinics, people can be seen by different members of the team. Each patient will have different issues due to their COVID-19 and our aim is for you to see the right people to help you and, meet your needs.
Members of the team you could see on the day of your appointment may include:
- Community matron (a very experienced nurse)
- Care co-ordinator
- Social prescriber
- Pulmonary rehab physiotherapist.
Each appointment will focus on the different symptoms that you may be experiencing so you may not need to see every member of the Long COVID Team.
The clinic is designed to help people who still have symptoms related to a COVID infection after 12 weeks. The aim of the clinic is to identify what symptoms a person is experiencing and how this is affecting them day to day. We help them find resources and/or treatments to manage these symptoms effectively so they can rehabilitate to living a fulfilling life.
Referral to the clinic is by GP only.
To be referred you and your GP will need to confirm it is over 12 weeks since your COVID symptoms started although referrals can be made by your GP at four weeks if clinically appropriate. We ask that your GP includes a summary of a recent blood test and, if appropriate, chest x-ray results. Your referral is checked and you will receive notification that it has been accepted. You will be offered a consultation which could take place, for example, by phone or virtually face to face.
The team is keen to share decision making as there may be choices available regarding: whether or not to have treatment, which treatment to choose, and whether treatment should be continued.
The team at the clinic need to know what is important to you so that they can help you to make the right decision about your healthcare.
You might want to ask these three questions:
- What are my options?
- What are the pros and cons of each option for me?
- How do I get support to help me make a decision that is right for me?
There are many helpful resources available:
- Your COVID Recovery | Supporting your recovery after COVID-19
- Information for the public | COVID-19 rapid guideline: managing the long-term effects of COVID-19 | Guidance | NICE
- Long COVID rehabilitiation booklet
- Managing fatigue: The Royal College of Occupational Therapists has put together some useful pacing advice to help you slowly build up your activity level
Managing breathlessness: The British Lung Foundation has created useful resources to explain breathlessness and suggest ways to manage it
A breathing guide to help you recover from COVID-19: Physiotherapy for Breathing Pattern Disorders
Having Long COVID is very distressing and can often impact your mood, making you feel sad or low or more anxious than usual. There is support available, you can find the support local to you by following the links:
- Improving Access to Psychological Therapies (IAPT): A talking therapies or online mood management course offered as one to one or group depending on your needs.
Self-help booklets for common issues such as stress, sleep, depression, anxiety.
Psychology Tool has produced a couple of free booklets on Post traumatic Stress Disorder and anxiety linked to COVID: Critical Illness Intensive Care And Post-Traumatic Stress Disorder (PTSD) – Psychology Tools
Many people talk to us about the worry of getting COVID again. This booklet tackles this issue: Living With Worry And Anxiety Amidst Global Uncertainty – Psychology Tools
This booklet helps you to work through how to do what matters in times of stress: Doing What Matters in Times of Stress (who.int)
A short video on managing anxiety linked to COVID: FACE COVID – How To Respond Effectively To The Corona Crisis – YouTube
Managing vertigo: A link to a booklet you can download with information about vertigo and how to manage it
Managing tinnitus (ringing in your ears): The British Tinnitus Association explains what tinnitus is and some ways to manage it - COVID-19 guidance for people with tinnitus
Managing loss of taste or smell: The NHS has provided some information and ideas for how to help your recovery aimed at people who have lost or have a changed sense of taste or smell
Building up exercise: The Chartered Society of Physiotherapy (CSP) has put together some advice on building up strength, managing breathlessness and pacing up activity
If you need information on sick leave please visit the following websites:
- Taking Sick Leave (GOV UK)
Sickness and absence because of long COVID: Long COVID – advice for employers and employees – Acas
More information when planning return to work:
Other charities or services that you may find helpful offering emotional support and information to those experiencing mental health difficulties, their families and carers:
- Samaritans call free on 116 123 or email jo
- SANE Mental Health helpline: 0845 767 8000
Call NHS 111 (free from a landline or mobile) when you need medical help fast but it’s not a 999 emergency. Available 24 hours per day.
Mersey Care also provides phone support for people experiencing a mental health crisis via the freephone numbers below:
- If you live in Liverpool and Sefton and are aged 16 and over, call our 24/7 freephone helpline: 0800 145 6570
- If you live in Halton, Knowsley, St Helens and Warrington and are any age, call our 24/7 freephone crisis line on: 0800 051 1508
- If you live outside of the above areas find your local mental health crisis line on the NHS website.
What is Long COVID?
Most people who catch COVID-19 won’t become severely ill and will get better relatively quickly. Many people feel better in a few days or weeks and most will make a full recovery within 12 weeks.
But significant numbers have had long-term problems after recovering from the original infection – even if they weren’t very ill in the first place. The term ‘Long COVID’ includes both ongoing symptomatic COVID-19 (5 to 12 weeks after onset) and Post-COVID-19 Syndrome (symptoms continuing 12 weeks or more after onset). More information is available here.
What are the symptoms of Long COVID?
Long COVID is associated with a wide range of different symptoms impacting physical, psychological and cognitive health in all age groups. It impacts on quality of life and the ability to work or attend education.
- extreme tiredness
- shortness of breath, heart palpitations, chest pain or tightness
- problems with memory and concentration ("brain fog")
- changes to taste and smell
- joint pain.
Surveys have identified tens and even hundreds of other complaints. Probably the largest study so far by University College London (UCL), identified 200 symptoms affecting 10 organ systems in people with Long COVID, at higher levels than in people who were fully recovered.
They include: hallucinations, insomnia, hearing and vision changes, short-term memory loss and speech and language issues. Others have reported gastro-intestinal, bladder problems, changes to periods, skin conditions, low mood or anxiety. How severe these symptoms are varies, but many have been left unable to perform tasks like showering, grocery shopping and remembering words.
Is Long COVID treatable?
In England, specialist Post-COVID assessment clinics have been set up. The clinics offer holistic assessment and help people to access the right specialist services. There are an additional 12 paediatric specialist hubs to see children and young people affected by Long COVID. People can access the assessment clinics via their GP. At the moment, the main focus is on managing symptoms and gradually increasing activity.
How will I know if I have Long COVID?
There is currently no test - instead it is a "diagnosis of exclusion", with doctors first ruling out other possible causes.
Can the vaccine help?
Research shows the risk of Long COVID is reduced in individuals who have received double vaccination. Vaccination can also help prevent people contracting the virus and developing Long COVID in the first place.