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

Posted on: 9th July 2020
Important - Shielding guidance updated on 22nd June 2020
New shielding guidance has been released across the UK.  Find out more by visiting  this link: https://britishlivertrust.org.uk/shielding/
Questions relating to returning to work or other activities
Our helpline is getting an increasing number of calls from people asking if it is safe to return to work or do other activities. Although we can talk this through with you, we cannot advise you on your personal level of risk.

It is important for you to speak to your clinician as they will be best placed to answer any questions relating to your personal situation and know your medical history. It’s also important to remember that the Shielding guidance is advisory – ultimately it’s up to you if you choose to follow it, having first discussed your personal situation with your doctor.

Read more about how your risk is assessed here

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

  • If you have any symptoms of coronavirus (a high temperature, a new, continuous cough or a loss or change to your sense of smell or taste), you should self-isolate.
  • If you are regarded as extremely clinically vulnerable you should continue to take social shielding measures until the end of July.
  • stay at home as much as possible and continue to wash your hands regularly and for 20 seconds each time.
  • work from home if you can.
  • To stay safe outside your home, you should keep your distance from others if you go out – 2 metres apart where possible. The government has announced that, in Northern Ireland from 29 June, the rule on social distancing will change from 2 metres to 1 metre with added restrictions. Similar guidance will also be in place in England from 4 July.  If you do decide to follow the 1 metre role, take steps to protect yourself such as wearing a face covering.

A face covering is something that safely covers your nose and mouth. They are mainly intended to protect others, not the wearer, from coronavirus (COVID-19) and are not a replacement for social distancing and regular hand washing.

Masks for clinically extremely vulnerable
According to the BMA, people who are clinically extremely vulnerable should consider wearing a fluid-resistant surgical mask, as these are likely to offer greater protection to the wearer

When should I wear one?

• Across the UK, it is mandatory to wear a face covering when seeing a health care professional
• In England (from 24 July) and in Scotland, you must wear a face covering in shops
• From 27 July, you must wear a face covering on public transplant across all four nations.

It is also encouraged that you wear a face covering in enclosed spaces where social distancing isn't possible or when you come into contact when you come into contact with people who do not normally meet.

Find out more information here: https://www.gov.uk/government/publications/face-coverings-when-to-wear-one-and-how-to-make-your-own/face-coverings-when-to-wear-one-and-how-to-make-your-own

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 classed as clinically extremely vulnerable are advised to take additional action to prevent themselves from coming into contact with the virus. If you’re clinically extremely vulnerable, you’re strongly advised to stay at home as much as possible and keep visits outside to a minimum (for instance once per day).

This is called ‘shielding’.  Please visit our shielding page for the guidance for England, Scotland, Wales and Northern Ireland.

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.

 

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.

We have a separate page with advice if you or a loved one has liver cancer. Please visit: https://britishlivertrust.org.uk/coronavirus-covid-19-health-advice-for-liver-cancer-patients/

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

 

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