Long COVID service :: Mersey Care NHS Foundation Trust

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What is Long COVID?

Adults and children may be affected by prolonged ill health due to COVID-19, which is known as Long COVID.

It’s important to recognise that people who had a mild case of COVID-19 can still develop Long COVID. This is why it’s important to have an early, detailed assessment if you are experiencing the common symptoms.

How might I feel if I have Long COVID?

Everyone is different, and lots of people might have different symptoms at different times. It is common to feels, or to experience, any of the below symptoms:

Respiratory (breathing) symptoms: breathlessness, cough
Skin rash
Brain fog and feeling sleepy
Cardiovascular (heart) symptoms: disturbances, chest tightness, chest pain, palpitations
Fatigue, high temperature, pain, hair loss

Other symptoms that you may be experiencing:

Stomach pain, nausea (feeling sick), diarrhoea
Ear nose and throat symptoms: tinnitus (ringing in the ear), earache, sore throat, loss of taste, altered taste, loss or altered smell.
Dizziness, vertigo (loss of balance)
General joint pains, muscle pain
Mood changes, anxiety, low mood.

These are only some of the symptoms you may be experiencing.

Definitions

Post COVID-19 syndrome: signs and symptoms which develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

Long COVID: the term ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after COVID-19 infection.

To be referred, your GP will need to confirm it is over 12 weeks since your COVID symptoms started. In certain circumstances, referrals can be made by your GP at four weeks if clinically appropriate.

Your GP will need to arrange for you to have some tests completed before they refer you to us. These are usually a chest x-ray, an ECG (a test to check your heart rhythm), physical observations such as blood pressure, pulse and respiratory rate, and blood tests.

You will initially be contacted by telephone and the staff member will ask you a few questions, this helps the Doctor when you come into clinic.

We can offer some of our consultations by telephone or video calling, as well as face to face.

When we receive your referral we will contact you within three weeks. If you have not heard from us, please contact your GP surgery.

Our Long Covid clinics cover Knowsley, Liverpool, South Sefton, Southport & Formby and St Helens. They are here to assist with your diagnosis and treatment plan.

At our clinics, you can be seen by different members of the team depending on your condition.

Members of the team include:

Care Coordinator
GP
Community Matron
Occupational Therapist
Physiotherapist
Health Care Assistants
Rehabilitation Assistants
Social Prescribers
Integrated Care Liaison Officer
Administrators

The aim of the clinic is to identify what symptoms you are experiencing and how this affects you day to day. We will help you find the appropriate resources and treatments so you can live the kind of life which matters to you.

The team will talk to you about what is important to you so they can help you make the right decision about your healthcare.

Once you and the team have agreed your health care needs, we will send you a ‘care plan’. This will provide you with details of who you will be seeing and provide contact numbers to any external teams that we may have referred you to.

The care plan can also be used if you need to apply for any benefits.

There are many helpful resources available:

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:

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
Dizziness after a COVID infection

If you need information on sick leave please visit the following websites:

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@samaritans.org
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.

Symptoms include:

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.

Is Long Covid the same as ME or Chronic fatigue?
Both conditions have some key symptoms in common and there may be a similar level of fluctuating functional impairment in both. However, there are some important differences that distinguish some people with Long Covid from those with ME/CFS.

Do supplements help?
Vitamin D is needed for bone and muscle health, as well as immunity. A daily vitamin D supplement of 10 micrograms or 400IU is recommended for all adults from October to April. If you spend little or no sunshine exposure because of Long Covid, and are spending most of your time indoors, you should take the supplement all year.