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

Posted on: 2nd April 2020

If you or a loved one has a liver condition, or you’ve had a liver transplant, you might be wondering what the coronavirus outbreak means for you.

High-risk groups

The government has now published advice for people who are at a very high risk of severe illness from COVID-19.

Some people with certain liver conditions who fall into this high-risk category are now advised to rigorously follow shielding measures to keep themselves safe.

We've had guidance from medical experts and the British Society of Gastroenterology as to which liver patients fall into this vulnerable group and what it means to them.

Liver patients who fall into the  ‘shielding group’  category are those on immunosuppression for a liver transplant or for autoimmune hepatitis (AIH).

Liver transplant patients who fall into this category will be receiving a letter by Sunday 29 March from NHSBT.

All hospitals have been asked to identify people on immuno-suppressive treatment for autoimmune hepatitis and they will receive a letter confirming that this has happened and you are registered with NHS England.

This will then allow access to social care (for shopping), delivery of medicines (if needed) and other social/financial support. If you have autoimmune hepatitis and do not receive a letter in the next week you should check with your consultant or nurse specialist. You can self-register for shielding on the gov.uk website.

 

People receiving immunosuppression treatment who are not AIH patients or transplant recipients
Other liver patients, who are on immunosuppressant treatment, may also receive a letter after their consultant assesses their risk.  Assessment of their risk will be based on the type of medication they receive and any issues with their immune system.

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,
  • 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.
  • 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.
  • if someone else lives with you they do not have to follow the shielding guidance. They should follow the social distancing guidance very closely and do what they can to support you.

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 follow the social distancing guidance very closely to support their need to adhere to shielding measures.

The consensus view of the BSG acknowledges the higher risk for patients with decompensated cirrhosis, who are not included in the shielding cohort.

They recommend that these patients with decompensated cirrhosis should be advised to adhere strictly to social distancing measures in order to protect themselves.  To adhere, you must:

  1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
  2. Avoid non-essential use of public transport when possible
  3. Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information
  4. Avoid large and small gatherings in public spaces, noting that pubs, restaurants, leisure centres and similar venues are currently shut as infections spread easily in closed spaces where people gather together.
  5. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
  6. Use telephone or online services to contact your GP or other essential services

Everyone should be trying to follow these measures as much as is practicable.

We strongly advise you to follow the above measures as much as you can and to significantly limit your face-to-face interaction with friends and family if possible.

The situation is changing all the time and the cohort considered high-risk may increase.

All liver patients should follow the guidelines set by the government for all the UK public, which is:

Stay at home

  • Only go outside for food, health reasons or work (where this absolutely cannot be done from home)
  • Stay 2 metres (6ft) away from other people
  • Wash your hands as soon as you get home

However, our medical expert, highly recommends that all liver patients, who are not identified as extremely vulnerable, should attempt to adhere to strict shielding measures above as much as they can to minimise their chance of exposure to COVID-19.

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.

 

Common questions about COVID-19

If you or a family member has a liver condition, you are bound to have a lot of questions.  Below you will find more information about the disease, its symptoms and preventative measures.  We have also answered some of the most common questions that callers have asked our helpline nurses.

You can also take a look at NHS information on COVID-19.

Coronavirus is a large family of viruses that includes cold, flu and more serious respiratory illnesses including Severe Acute Respiratory Syndrome (SARS).

COVID-19 is  the disease caused by a recently discovered coronavirus.  This new virus and disease were unknown before the outbreak began in Wuhan, China, in December 2019.

According to the World Health Organisation, the disease can spread from person to person through small droplets from the nose or mouth which are spread when a person with COVID-19 coughs or exhales.

The illness affects the lungs and airways. The symptoms of the coronavirus are similar to some much more common illnesses, such as cold or flu.

The symptoms include:

  • A cough
  • High temperature
  • Shortness of breath

But if you have these symptoms, it doesn’t necessarily mean you have the illness.

Everyone must stay at home to help stop the spread of coronavirus.

You should only leave the house for 1 of 4 reasons:

  • shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
  • one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
  • any medical need, or to provide care or to help a vulnerable person
  • travelling to and from work, but only where this absolutely cannot be done from home

Follow these steps to avoid catching or spreading germs:

  • wash your hands with soap and water often – use hand sanitiser gel if soap and water are not available
  • try to avoid close contact with people who are unwell, cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze.
  • Throw used tissues in the bin and always wash your hands afterwards.

  • This is a new virus, so no one has immunity through prior exposure
  • So far:
    • The majority of cases are in adults and have been mild
    • There are examples, including of people over 80 and with transplant who have recovered
  • At this point in most countries, we can assume community spread; that means it is wise to treat any person as a potential carrier. We know that asymptomatic spread can occur during the incubation period with viral shedding when symptoms begin.
  • Coronavirus is mostly understood to be spread by droplets (i.e. sneeze or cough which spread about 6 feet)
    •  May be aerosolized
    •  Fecal-oral transmission is possible
    • As people with suppressed immune systems due to medication, age, or as a component of our illnesses, we may be at elevated risk of both contracting the infection and having a more severe reaction. Some early reports from Italy, indicate however, that our weaker immune response may lead to lower reaction and less lung damage
    • Also concurrent conditions such as diabetes (high HbA1C), obesity, heart disease, kidney disease and anemia may increase susceptibility

Social distancing is about ways to avoid catching and spreading coronavirus.

This is about significantly limiting face-to-face contact if you can and making sure that essential visitors (such as health care services, carers or family members) follow handwashing and hygiene advice scrupulously. They should not visit you if you are unwell but make other arrangements for your care.

You can go outside for a walk to the park or into your garden if you stay more than 3 steps (2 metres) from others.

Shielding is a way to protect people who are extremely vulnerable from coming into contact with coronavirus by minimising all interaction between them and other people.

If identified as highly vulnerable, they are strongly advised to stay at home at all times and avoid any face-to-face contact for at least 12 weeks.

They should self-isolate. People who provide essential support, such as health care, personal support for daily needs and social care should continue to visit. If someone cares for a highly vulnerable person, must stay away if they have any symptoms of coronavirus.

People in this group who think they’ve developed coronavirus symptoms of coronavirus should call NHS 111 as soon as they get symptoms.

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.

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 social distancing and keep taking any medication.

At the moment liver transplants are still taking place. However, this may need to be reviewed in the future if the virus escalates.

Many people are telling us that they feel very worried and anxious with the sudden outbreak of COVID-19. It is quite possibly one of the most important health issues we have seen and we are facing unprecedented challenges.

It’s normal to have these sorts of feelings at a time like this especially if you’re living with an underlying health condition. Protecting your mental health is just as important as your physical health. Here are some ways you can do that:

Avoid information overload

Only look at reliable sources of information about coronavirus that are updated regularly.  Sources like the NHS, Gov.uk, Health Protection Scotland  and Public Health Wales can provide you with up-to-date information.

Try to stay connected

At times of stress, we work better in company and with support. Try and keep regular contact with your friends and family and friends.

It’s good to connect with people on social media but avoid reading or engaging with content that might cause unnecessary stress to you or others.  Only share content from reliable sources.

If you are feeling isolated or lonely and need someone else to talk to, contact one of these helplines:

  • Samaritans: 116 123 (for anyone at any time for any reason)
  • Mind: 0300 123 3393

Keep a routine

It is a good idea to stick to your daily routine as much as you can. You may also like to focus on the things you can do if you feel able to including partaking in activities and hobbies that you enjoy.

Keep healthy

Try to lead a healthy lifestyle - eating a diet including plenty of fruit and vegetables, taking regular exercise and getting a good night’s sleep will help your immune system to deal with any infection.

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