Coronavirus (COVID-19) – health advice for people with liver disease and liver transplant patients

Posted on: 13th October 2020

The coronavirus is a large family of viruses that includes the common cold and flu. COVID-19 is the disease caused by a recently discovered coronavirus.

If you or a loved one has a liver condition, or you’ve had a liver transplant, you are likely to be very worried about the impact of COVID-19.

Here you’ll find all information and links to help you if you live with a liver condition.

Latest update
A number of new measures have been introduced across the UK to curb the rate of Covid-19 infection in the UK.

But what happens for those who were shielding earlier this year? In August, the guidance to shield, and the support provided, was paused in England, in Scotland, in Wales and in Northern Ireland.

However, we understand that the news that COVID-19 is on the rise again, is a concern for liver patients. We have been in regular contact with the government and health officials and consulting liver consultants to provide you with the latest information.

You can find out more about the new guidance for England issued by the government on 13th October 2020 here:  https://britishlivertrust.org.uk/new-advice-for-clinically-extremely-vulnerable-patients-to-be-issued/

Scotland – https://www.gov.scot/publications/covid-shielding/

Northern Ireland – https://www.nidirect.gov.uk/articles/coronavirus-covid-19-pausing-shielding-extremely-vulnerable-people

Wales –  https://gov.wales/shielding-extremely-vulnerable-people

If you are worried about your own personal risk, it is important that you discuss this with your doctor. New evidence about how the virus behaves is emerging all of the time.

There are three main elements to consider:

1.What would happen to me if I contracted the coronavirus?

If you were on the shielding list before, you have been identified you as highly vulnerable.  You may also be vulnerable (but to a lesser extent) if you have other types of liver disease.

2. How likely am I to catch the virus?

The recommended response to the ‘shielding category’ is nationally set, remains under review and will change in response to updated guidance from the Chief Medical Officers and the UK government. It is based on the latest scientific evidence on how the pandemic is behaving and includes disease prevalence, R rates, mortality, etc.

The government will also look at figures at a local level and adjust advice regionally if needed.

3. My own personal situation

Everyone is different and has different circumstances. Ultimately it is up to each patient to decide how they respond to the advice. Based on the above, with support from clinical teams, each patient will need to make personal decisions about what they will then do.

Issues to weigh up will include looking at other risk factors (such as age; any other pre-existing medical conditions, morbidities and concurrent medication; ethnicity, sex, BMI; smoking, alcohol etc); home and family circumstances including age range of others at home and nature of accommodation, the person’s mental health, overall wellbeing, employment status and financial position.

Everyone who was identified as extremely vulnerable is still on a list.. The virus will be monitored continuously over the coming months and if it spreads too much, you may be advised to shield again. This may happen nationally, or more likely will happen in particular regions if there are isolated areas of high prevalence. It may also mean that if a vaccine is created, the government will prioritise the shielding patients to be vaccinated.

Please refer to the Government guidance on England's three-tier lockown rules below.

If you are in Scotland, in Wales or in Northern Ireland, please refer to their guidance following te links below:

Scotland - https://www.gov.scot/publications/covid-shielding/

Northern Ireland - https://www.nidirect.gov.uk/articles/coronavirus-covid-19-pausing-shielding-extremely-vulnerable-people

Wales -  https://gov.wales/shielding-extremely-vulnerable-people

The advice for the clinical extremely vulnerable, which will be in addition to the basic restrictions set out in the Local Covid Alert Levels framework everyone must follow, includes:

  • For Local Covid Alert Level - MEDIUM: strictly observe social distancing, meet others outside where possible, limit unnecessary journeys on public transport and work from home where possible, but you can still go to work and children should still attend school. This is on top of restrictions for everyone to only meet in groups of up to six people.
  • For Local Covid Alert Level - HIGH: reduce the number of different people you meet outside, avoid travel except for essential journeys, work from home where possible and reduce the number of shopping trips made or go at quieter times of the day. You can still go to work if you cannot work from home because all workplaces should be covid secure, and children should still attend school. This is on top of restrictions for everyone to not meet other households indoors, unless part of a support bubble, and to only meet in groups of up to six people outdoors.
  • For Local Covid Alert Level - VERY HIGH: work from home, in general stay at home as much as possible, and avoid all but essential travel. You should also significantly reduce shopping trips, and if possible use online delivery or ask people in your household, support bubble or volunteers to collect food and medicines. People in these areas are encouraged to still go outside for exercise, and can still go to school and to work if they cannot work from home.

The government has said that they recognise that a small number of individuals may require additional support to follow the guidance at this alert level, and they are advised to contact their local authority if they need assistance.

You can also read more by looking at the framework here: Local COVID Alert Levels - Table Comparison.

Coronavirus is a new disease and we are still learning every day about the risks it poses. There is very little published data relating to chronic liver disease, however an international collaborative registry has been set up to monitor what happens to patients with chronic liver disease who develop coronavirus. The analysis of this data is being undertaken by teams at the University of Oxford (UK) and University of North Carolina (USA).

The initial preliminary results show that sadly that the more advanced your liver disease is when you contract coronavirus, the worse your outcomes are likely to be. People with advanced liver cirrhosis who are admitted into hospital with coronavirus have very poor outcomes. The worldwide data shows 27% of people with advanced or decompensated cirrhosis who contract coronavirus are admitted into intensive care, 31% sadly die (combined weekly update dated 25 August 2020).

The rates of death in patients with liver disease are much higher than those observed in the general population where studies predict between 3-4% of people who have tested positive for COVID-19, die.

These results do sound very alarming. However, it’s important to remember that this data is subject to bias – doctors often only submit data to the registry for the most serious cases they see and more than 90% of patients in the study were admitted into hospital. Many other people who have contracted the virus at home, may have recovered and will not be in these records.

The same study has also looked at outcomes for people who have had a liver transplant. The initial results from this study indicate that, assuming no other risk factors or comorbidities, people who have had a liver transplant who contract coronavirus are not at an increased risk of death compared with the general population.

As the UK begins to relax lockdown, this new data does suggests that we need to make sure that everyone with liver disease continues to protect themselves from this virus by strictly following social distancing measures and that those with ‘decompensated liver disease’ follow the stricter shielding advice. The British Liver Trust is taking this issue up with the different UK Governments to seek further clarification. In the meantime, if patients are concerned about their own situation, they should contact their own liver specialist to obtain specific advice from them.

Deciding who should shield was challenging for the NHS.  The first case of COVID-19 in the UK was just a month after the first case in China so the NHS had to decide on who should shield based on how other viruses have previously impacted people with underlying health conditions.

As clinicians have learnt more about the virus from studies taking place across the world and emerging datasets there is a growing amount of evidence to support this guidance.

Shielding guidance

Shielding is for a patient’s protection rather than a legal obligation. The need for shielding can be flexed further on a case by case basis in consultation with your healthcare team.

Following a request by the British Liver Trust and patients, the British Society of Gastroenterology has worked closely with other professional bodies including the British Association for the Study of the Liver, British Transplantation Society and NHS Blood & Transplant to agree who should be on this ‘shielding list’. These groups are:

Liver patients on the shielding list

  1. Patients with chronic liver disease who are on immunosuppressants

Data: There are as yet no large enough datasets to support/refute this approach and thus this is based on clinical judgement.

  1. Any patient with liver cirrhosis and decompensation or complication as defined by presence/recent history (within 12 months) of ascites, hepatic encephalopathy, hepatocellular carcinoma, variceal bleed or synthetic liver dysfunction.

Data: This is supported by data from the COVID-HEP registry that indicates that patients with decompensated liver cirrhosis have an unadjusted mortality rate 5-28 times higher than patients with liver disease without cirrhosis.

  1. Patients who are actively on the liver transplant waiting list or who have received a liver transplant

Data: This is supported by data from NHSBT that indicates that patients who have had liver transplant have an unadjusted mortality rate of 25%. Patients who are on the transplant list could be called in any time and will not be transplanted if coronavirus positive.

The European Association for the Study of the Liver (EASL) and the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) have issued a Position Paper, providing recommendations for clinicians caring for patients with liver diseases during the current pandemic.

Read more: EASL and ESCMID Position Paper

You should continue to work from home if you can. If this is not possible, your employer should take steps to make your workplace Covid-secure. You can find out more about safety measures in your workplace by searching here, (https://www.gov.uk/guidance/working-safely-during-coronavirus-covid-19) for example if you work in a supermarket, you can read the ‘Shops and branches’ guidance.

If your employer cannot make your workplace Covid-secure, they can access the Coronavirus Job Retention Scheme for those who have been furloughed for a three-week period prior to 30 June, until the end of October.  Wales, Scotland and Northern Ireland have slightly different guidance for employers.

If you are concerned about your safety at work, talk to your employer and look to come to an agreement. For example, you could discuss staggered working times or taking on a different role. You can get advice on your specific situation and employment rights by visiting the Acas website or calling the Acas helpline, 0300 123 1100.

If you have liver disease or liver cancer, you might be particularly worried about how to access treatment, medication and appointments. It is really important that you contact your medical team to find out how this affects you.

Some medical appointments have been postponed or they may be delivered in a different way. This is to help stop the spread of coronavirus and to protect the NHS.

You may be asked to have your appointment over the phone or by online video consultation. Other patients will find their appointment has been rearranged.

Patients who need to have their appointments face-to-face will be asked not to bring a friend or relative with them, unless completely necessary. When you visit the hospital, you'll need to wear a face covering that covers your nose and mouth, unless you have a medical reason which prevents you from doing so.

Cancer treatment and clinically urgent care will still be treated as a priority, but your treatment plan might be reviewed. They'll consider whether the risks of your treatment have changed as a result of coronavirus. Your clinical team will talk to you and answer questions you may have about any changes to your treatment or appointments.

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