Summary of results: COVID-19 impact on liver disease patients survey

In February 2021, we carried out a survey to find out what impact the coronavirus (COVID-19) pandemic has had on liver disease patients, many of whom have followed the strict shielding guidance for clinically extremely vulnerable people.

We were very pleased with the response, with over 650 patients covering all types of liver condition from across the UK completing the survey. We would like to thank everyone who took part.

Every response and comment is valuable for our work to understand how the current and future situation affects liver disease patients so we can work with key policy-makers within the NHS, and campaign for better healthcare and support services to meet your needs, now and in the future.

Summary of findings

Impact of the pandemic on liver patients’ lives

For people with a liver condition and their families, the coronavirus (COVID-19) pandemic has had a huge impact on their lives in the last year, with many having to adhere to restrictions that have affected them both personally and professionally.

The pandemic has affected all aspects of their lives, including their liver condition. The survey found that:

6 in 10 are worried about their liver disease/liver cancer becoming worse due to avoiding hospitals
More than half have worried about urgent treatment being delayed
70% worried that something might be missed by seeing their doctor regularly
40% have been worried about their mental health
A quarter have been worried about losing their job
Almost half have financial concerns

How has the coronavirus (COVID-19) pandemic impacted your life?

Too many things to worry about – kids homeschooling, becoming sick, not being able to work, the possibility I could lose my job. Everyone else in work is able to work but me, therefore another member of staff filling in for me who wants my job.

I have been very worried about my job, both having it and not having it.

Biggest problem has been isolation. Mental health is definitely adversely affected. Cabin fever.

Concern about catching coronavirus (COVID-19)

Over 70% of patients have been worried about catching coronavirus (COVID-19) and more than 80% said they have been worried about becoming seriously ill or dying should they to catch the virus.

Not surprisingly, more than 7 in 10 said they would be less concerned about the virus if they didn’t have a liver condition.

While the pandemic has been a worrying time for all of us, it has been especially worrying for those suffering from conditions which make them more vulnerable to complications from the virus. The incredible sacrifices that patients have made to keep themselves and others safe is clear from hundreds of verbal responses that we received, including the ones below.

How have you felt about the COVID-19 restrictions?

I am not going out except for urgent blood tests and Coronavirus vaccine. I have shopping delivered. I do not see my family. It feels like I am in prison.

I want to eliminate all risks for myself catching COVID. Also, as the guidance is to shield from health professionals, I do not want to put further stress on the NHS.

I have to protect myself for my own health and life plus I have young children who depend on me being well enough to care for them.

I go out to exercise but keep everything else to a minimum. I wear gloves, mask etc and sanitize my hands, car, house and shopping.

Experience of people with liver disease who tested positive for coronavirus (COVID-19)

6% of liver disease patients who completed the survey had tested positive for COVID-19 and 62% had completely recovered from the virus at the time of survey (February 2021).

Experiences of patients who tested positive range from being completely asymptomatic to 15% being hospitalised.

What was your experience following your positive COVID-19 test?

I had covid while in hospital for a fluid drain that didn’t go as planned and spent 3 weeks hospitalised with infections.

I tested positive with no symptoms at all.

I had covid at the beginning of lockdown. It affected me mainly with chest problems and fatigue. I still have fatigue that is different to my usual fatigue. I was not hospitalized because I chose to stay home. I had what I would describe the worst case of flu and pneumonia you could imagine. I believe now that I had the milder version.

Whilst I feel completely fine and I am back to full health, my liver function tests have came back as abnormal since having it. We are looking to see if that’s caused by covid or something else as I’m only 1 year post transplant.

Accessing treatment and appointments during the pandemic

While 46% of liver disease patients reported no delays, many patients who have needed access to a GP or hospital appointment for their liver condition since the coronavirus outbreak experienced a delay for various reasons.

32% said that the hospital delayed an existing appointment while 11% chose to delay an appointment due to concern about COVID-19 and 7% delayed their appointment to protect the NHS.

This suggests that across the UK, a high proportion of liver disease patients may not have been receiving timely access to treatment for their condition with many concerned about the long-term impact on their health.

How have you felt about the COVID-19 restrictions?

I’m due to have a liver scan sometime this year but not sure when plus other check-ups too but haven’t had any appointments due to COVID-19 and I’m worried in case there’s any problem with my liver.

Concerned about collateral damage to my health should appointments be delayed during the pandemic.

Struggle with no face-to-face contact with NHS, only by phone.

Being diagnosed just before lockdown I’ve only met my specialist nurse once – not seen consultant nor GP since – a lot to digest with very little support – local medical teams are so stretched and it’s very worrying to not feel supported.

Access to information

Access to trustworthy information on coronavirus (COVID-19) has been essential for patients during the pandemic so they can make the right choices to reduce their risk of exposure to the virus.

The most popular sources of information for liver disease patients have been the Government website, Government briefings, social media, charity websites and NHS.

We were pleased to hear that over 90% of respondents consider the British Liver Trust website to be the most trusted source of information for coronavirus (COVID-19), followed by the NHS website and hospital healthcare professionals.

70% of patients said they found social media an untrustworthy source of information along with traditional media (45%) and online searches (38%).

How have you felt about the COVID-19 restrictions?

Don’t know who to speak to for advice – ongoing symptoms but just being told to ride it out, concern on the impact on my illness.

Conflicting news re liver disease between English and Scottish guidelines. Whether you should shield or not.