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

Posted on: 15th May 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.

Important
If you’ve received an e-mail or text advising you to stop shielding, please seek further advice if this is the first you’ve heard on the matter. These texts and e-mails should only have been sent to people who have already spoken to their clinician or GP.

The main symptoms of coronavirus are:

  • a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
  • a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
  • a loss or change to your sense of smell or taste – this means you've noticed you cannot smell or taste anything, or things smell or taste different to normal

If you develop any of the above symptoms, do not go to places like a GP surgery, pharmacy or hospital. Stay at home and follow the Government guidance

All patients with liver disease are at risk of adverse outcomes from the virus. We are therefore advising that all liver patients should attempt to adhere to strict social distancing measures as much as they can to minimise their chance of exposure to COVID-19.

In addition, some people with certain liver conditions are extremely vulnerable and are advised to rigorously follow shielding measures to keep themselves safe.

Liver patients who fall into the extremely vulnerable  ‘shielding group’  category are:

  • people on immunosuppression for a liver transplant or for autoimmune hepatitis (AIH).
  • people with liver cancer who are undergoing active chemotherapy or having immunotherapy or other continuing antibody treatments.  We have specific advice for liver cancer patients here.

Patients who fall into this category should have received a letter either from a governmental organisation or from the clinician in charge of your care.

If you believe that you are in this group and have not received a letter please still follow the ‘shielding’ advice. If you need a letter, for example, for employment reasons or to access social care support, contact your doctor or nurse specialist.

The British Liver Trust has taken advice from leading clinicians and is also advising patients who have decompensated liver disease to practice shielding as far as is practically possible although this is not part of the formal guidance from Public Health England. The government approach also varies with Scotland, recommending shielding for those with decompensated liver disease as well. Please read our specific guidance for decompensated cirrhosis below. The British Liver Trust has approached the governments in England, Wales, Scotland and Northern Ireland for clarification on this issue.

Coronavirus is a new disease and the situation is continually changing as new information and data informs the information that we provide on our website and via our helpline.

We are also seeking clarification from the different bodies on when and how they will be doing an evidence-based refinement of who actually needs to shield. You can self-register for shielding on the gov.uk website.

If you are concerned about your own situation, please contact your own liver specialist to obtain specific advice from them.

People who are extremely vulnerable should:

  • stay at home at all times and avoid any face-to-face contact for at least 12 weeks, from the day they receive their letter.
  • get all essential items delivered, and have the person leave them at the door. If you can’t do this,  register for help with daily living tasks, such as social care and shopping.
  • use phone or online services to contact your GP or specialist, or other services. At home, minimise all non-essential contact with people you live with. Hand washing remains essential: all people coming to the house should wash their hands with soap and warm water for at least 20 seconds when they arrive, and often while they are there.
  • Read the question below carefully about 'What to do if I am in a vulnerable group and I live with other people'.
  • If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces. People who provide essential support to you, such as health care, personal support for daily needs and social care should continue to visit. But carers must stay away if they have any symptoms of coronavirus.

If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice below, there is no need for them to also shield alongside you.

  1. Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilatedAim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household.
  2. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  3. If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
  4. If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.
  5. We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

What is decompensated cirrhosis?
Decompensated liver disease is an acute deterioration in liver function in a patient with cirrhosis. It can be difficult to define. We would suggest that if you have been hospitalised for liver disease or have had jaundice, ascites, hepatic encephalopathy, hepatorenal syndrome or variceal haemorrhage that you follow the shielding advice.

The Trust is calling for the Government to include those with decompensated liver disease in the group of 'extremely vulnerable' people to shield from COVID19.

We have sought advice from senior liver clinicians and they have acknowledged that patients with decompensated cirrhosis are vulnerable and high risk. The British Liver Trust is therefore advising that all patients with decompensated cirrhosis follow the shielding guidance even though it is not part of the formal guidance.

If you are advised to shield, you should:

  • stay at home at all times and avoid any face-to-face contact for at least 12 weeks, from the day they receive their letter.
  • get all essential items delivered, and have the person leave them at the door. If you can’t do this,  register for help with daily living tasks, such as social care and shopping.
  • use phone or online services to contact your GP or specialist, or other services. At home, minimise all non-essential contact with people you live with. Hand washing remains essential: all people coming to the house should wash their hands with soap and warm water for at least 20 seconds when they arrive, and often while they are there.
  • Read the question below carefully about 'What to do if I am in a vulnerable group and I live with other people'.
  • If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces. People who provide essential support to you, such as health care, personal support for daily needs and social care should continue to visit. But carers must stay away if they have any symptoms of coronavirus.

 

The coronavirus outbreak is a very worrying time for everyone. This anxiety is even more acute for those patients and their families who are anxiously waiting for a liver transplant.

At the British Liver Trust, we are communicating regularly with leading liver consultants who have said that all essential and urgent liver transplants will go ahead. Increasingly as the viral epidemic subsides the number of transplants undertaken is expected to increase. Specialists will also discuss with patients whether it’s riskier for them to have their treatment now or delay until a safer time.  NHS staff have been holding appointments via telephone, email or video appointments to minimise risk and only seeing patients face to face when absolutely necessary.

You should get in touch with your transplant co-ordinator if you have specific questions about your treatment plan as each transplant unit is able to provide information that is relevant and specific to their own patients. However, please bear in mind that the transplant units are extremely busy and may take some time to get back to you. In the meantime, follow the guidance for shielding and keep taking any medication.

NHS Blood and Transplant along with the medical team and organ advisory group doctors, have agreed that the donor acceptance criteria be reduced on a temporary basis as they all have to be tested for the virus. The British Liver Trust understands that at the moment liver transplant centres will remain open and urgent transplants are still taking place. However, transplant recipients are considered to be an extremely high-risk group should they develop coronavirus. Whilst, we are concerned that some people who need a transplant may have this delayed because of this unprecedented crisis, the balance of risk needs to be assessed and vulnerable patients need to be protected from contracting the virus.

 We are urging the public to help relieve the pressure on our NHS by following the Government’s guidelines on social distancing and shielding to reduce the spread of Coronavirus so that normal transplant services can be resumed as soon as possible.

If you are an autoimmune patient on steroids, you are immunosuppressed and are therefore be considered ‘high risk’.

However, small doses of steroids alone are very unlikely to increase the risk of developing a severe form of Covid 19.  All hospitals have been asked to assess people on immuno-suppressive treatment for autoimmune hepatitis and if your consultant believes you are at high risk you will receive a letter.  The risk is probably higher if you are taking certain immunosuppressive drugs combined with steroids.

If you are taking such medicines and do not receive a letter in the next week you should check with your consultant or nurse specialist.

All patients should continue to take their medication unless directed otherwise by their consultant. Please also follow the social distancing advice in full.

The situation is changing all the time and the cohort considered extremely vulnerable may increase. The British Liver Trust is seeking clarification from NHS England as to how they will be doing an evidence-based refinement of who actually needs to shield as further evidence comes to light.

All liver patients should follow the guidelines set by the government for clinically vulnerable (different to extremely vulnerable) people to minimise their chance of exposure to COVID-19:

  • stay at home as much as possible
  • work from home if you can
  • limit contact with other people
  • keep your distance if you go out (2 metres apart where possible)
  • wash your hands regularly

Do not leave home if you or anyone in your household has symptoms.

If you live with someone who falls into an extremely vulnerable group, you do not have to follow the shielding guidance.  However, we recommend that you try to separate yourself completely but if this is not possible, you should strictly follow the social distancing guidance very closely to support their need to adhere to shielding measures.

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 recently 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 people with liver cirrhosis have poor outcomes. This worldwide data shows 25% of people with cirrhosis disease who contract coronavirus are admitted into intensive care, 17% are placed on a ventilator and 36% sadly die (combined weekly update dated 12 May 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.

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.

On 23rd April 2020, NICE published guidance for the care of patients with suspected and confirmed COVID-19.

They cover the management of disorders of the digestive system (gastrointestinal and liver conditions) that are treated with drugs that affect the immune response and the care of people in hospital who develop heart problems (acute myocardial injuries) as a consequence of COVID-19 infection.

COVID-19 rapid guideline: gastrointestinal and liver conditions treated with drugs affecting the immune response

The guideline on gastrointestinal and liver conditions provides clinicians with advice on how to adjust care to reduce patients’ exposure to COVID-19 and how to balance the risks and benefits of taking drugs that affect the immune response during the pandemic.

It recommends that patients who are not known to have COVID-19 continue to take existing courses of drugs that affect the immune response to minimise the risk of a flare-up.

If a patient develops COVID-19 symptoms, it’s recommended that they contact their clinical team to get advice about any drugs they are taking.

Clinicians should then discuss the risks and benefits of stopping treatment with the patient or their parents or carers taking into account factors such as the severity of the COVID-19, the severity of their condition and other risk factors such as age and other health conditions.

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