Long COVID / Post COVID-19 syndrome

What is long COVID?

Long COVID (otherwise called ‘post COVID-19 syndrome’) is a varied condition that effects people in many ways and often changes from day to day.

Long COVID is a collection of symptoms that have developed since catching COVID-19 and last for more than 12 weeks.

How common is long COVID?

It is difficult to give an accurate answer to this question. Research in the UK suggests the prevalence (the number of new patients effected in a given time) is anywhere between 2% and 30% of those who catch COVID-19. It is more difficult to give a direct answer to this with the different COVID-19 variants and the impact of vaccination. At this point, there is some early research suggesting those who are vaccinated and go on to catch COVID-19 are less likely to develop long COVID.

Why does someone develop long COVID?

The factors which increase someone’s risk of developing long COVID are unclear. Some research has suggested that factors such as older age, obesity and diabetes increase the risk. However, our experience tells us this is often not the case. It does not really seem to be related to how ill you were when you caught COVID-19 – many of our patients did not need to go to hospital and are much more severely affected by long COVID than the initial infection.

How you felt and how you rested may play a part. We see many patients whose whole family was infected at the same time, yet they are the only one with long COVID. There is ongoing research to try and work out what leads to long COVID. It could be your immune system is over activated by the virus which causes microscopic damage (that cannot be picked up on blood tests or scans) to different parts of the body which cause the wide range of symptoms people experience.

What are the common symptoms?

Over 200 different symptoms have been reported by patients. Common symptoms are unpredictable and can change daily. Some symptoms may disappear randomly to be replaced by new ones. We tend to see problems with breathing, ongoing fatigue with “brain fog” and heart symptoms (such as palpitations and chest pain) as the three most common symptom groups. Some other symptoms include headaches, dizziness, ringing in the ears, rashes, aches and pains, tingling and pins and needles. It is also very common to feel overwhelmed and upset with what is happening to you. Many people feel frustrated and anxious about the length of their recovery and focus on what they can no longer do.

What sort of things help?

As more people are seen in long COVID clinics, we learn more about the best ways of treating symptoms to help guide recovery. Certain conditions such as headaches and palpitations can respond to medications, but many symptoms need other therapy. Breathlessness, even without damage to the lungs, is very common and can be treated with physiotherapy. Fatigue can be debilitating and can have a huge impact on your life. Our fatigue service can offer assessment and support management to help this recover; they have seen lots of patients getting better with their help. Many patients feel lost and upset and talking therapies can help with exploring thoughts, feelings and emotions which can support some people break down some barriers to recovery.

What can family, friends and employers do to help?

People with long COVID can experience a wide range of changing symptoms that can have a big impact on their lives. Naturally this will often affect their family, friends, loved ones as well as work and hobbies that make them the person they are. This can be really difficult, but families, friends and work colleagues are vital in helping recovery. A supportive and non-judgemental attitude is really helpful. Many of the symptoms of long COVID are hidden and this can lead to some people feeling they are not believed or taken seriously. Kindness, empathy, and an understanding of how much their life has changed really helps. We recommend a very slow and cautious return to work, especially working from home if possible. This makes it much easier to pace activities. We are happy for family members to sit in on the assessment if this is helpful to understand the illness.

What is Post-Covid Assessment Service (PCAS)?

PCAS stands for the Post-Covid Assessment Service and covers people living (and those registered with their GP) in Bedfordshire, Luton and Milton Keynes. Your GP or hospital specialist can refer you to the PCAS. We ask your GP to make sure certain tests have been done such as a chest X-ray and certain bloods tests before your referral. This is to rule out medical problems that can mimic long COVID. Once your GP has referred you to the PCAS, we review your GP record (as long as you have given consent for your medical information to be shared) which helps us determine which further tests you might need. At this point we may ask your GP to do some basic tests including blood tests, if they have not already been done, before we see you. Once we receive the referral, we will send you a letter explaining the role of the PCAS and tell you that you are on the waiting list for an assessment.

We can offer face to face appointments or telephone appointments. We can offer appointments in Bedford, Luton and Milton Keynes (see below). These will be booked at a time that suits you.

Our first aim is to make sure there is no damage to organs such as your heart or lungs and then help guide you to recovery by either directing you to other services or referring you to other specialists. We are not commissioned to provide ongoing and long term follow up; this can be done through your GP.

Within the service, we can arrange specialist tests on your heart and lungs, such as echocardiography, ECG monitoring and spirometry. We have a team of clinicians including GPs, specialist nurses, a respiratory physiotherapist and care coordinator. If we feel you need more advanced testing or specialist review, we will refer you directly without you having to go back to see you GP.

How do I access this service?

Your GP or hospital specialist can easily refer you to PCAS if you have long COVID symptoms for over 12 weeks, they will also request a base line blood test and chest x-ray.

Once you have been referred to PCAS you will be contacted by one of the PCAS team to arrange your initial appointment with one of the clinical team.