British Liver Trust calls for people with decompensated liver disease to be included in shielding guidance

Posted on: 4th May 2020

The British Liver 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 are also advising all patients who have severe liver disease to practice the shielding advice as far as is possible.

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 British Liver Trust’s helpline has received numerous calls from patients with decompensated cirrhosis who are confused about whether they should be shielding.  This is a relatively small number of patients and they are not included in the Government’s formal guidelines.

The Government has published ‘shielding’ advice for people who are at a very high risk of severe illness from COVID-19. Liver patients who fall into the  ‘shielding group’  category are those 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 should also follow the shielding advice.

Shielding is different from social distancing as it involves staying at home at all times and avoiding all face to-face contact for at least twelve weeks, except from carers and healthcare workers who you must see as part of your medical care. The rest of your household should support you to stay safe and closely follow guidance on social distancing (above), reducing their contact inside and outside the home. This will help protect you by stopping you from coming into contact with the virus.

The Trust has 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.

Professor Stephen Ryder, Medical Advisor to the British Liver Trust said, “Coronavirus is a new disease and we are still learning every day about the risks. There is very little published data relating to cirrhosis, however if you have severe liver disease or ‘decompensated cirrhosis’ I would advise that you are vulnerable and potentially at risk of suffering from severe complications if you're infected with the coronavirus.

The British Liver Trust is taking this issue up with the different UK Governments to seek further clarification, in the mean time I would urge patients with decompensated liver cirrhosis to follow the advice on shielding that is on the British Liver Trust website.

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

People with decompensated cirrhosis are already very ill with problems such as encephalopathy, jaundice and bleeding problems. Many of these patients have multiple complex problems including mental health issues, addiction, obesity and deprivation.  They may not have family members who are able to support them in accessing food and medicines. It is therefore really important that these patients are provided with a letter so that they can access this support from their local authority.

The British Liver Trust is campaigning on this issue and has written to the CEO of the NHS and the Chief Medical Officers of each of the UK nations. We have also gained formal support of this position from the British Society of Gastroenterology and British Association for the Study of the Liver.

See more about the difference between social distancing and shielding here: