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
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.
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.
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.
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%).