This summer, the British Liver Trust worked with the Patient Information Forum to distribute a survey, Covid Choices, about the challenges that patients face in making decisions about accessing healthcare during the pandemic, and balancing the risk of catching COVID 19 with the risk of delaying or missing treatment.
Thank you to everyone who responded.
87 people with liver disease (or on behalf of someone with liver disease) responded to the survey, which found that:
- 74% of people with liver disease are extremely or very worried about their risk of catching.
- More than half (58%) are extremely worried about becoming seriously ill or dying if they caught Covid-19.
- 60% of people with liver disease said their hospital had delayed an existing appointment. However, if they could attend, most (65%) felt adequately informed about what to expect at their hospital appointment beforehand.
- 50% of people with liver disease were extremely or very worried about the risk of urgent treatment being delayed
- 48% were extremely or very worried that something might be missed if they didn’t see a doctor or nurse.
Despite these understandable concerns, many people with liver disease felt somewhat confident (48%), very confident (28%) or extremely confident (8%) about protecting themselves from catching Covid-19.
When it came to decision making, most people said they prefer to follow guidance from health professionals or organisations they trust (77%). 23% said they prefer to make decisions for themselves based on information from their own personal networks and their own data gathering.
However, lots of people said there were gaps in the information available about their personal risk of becoming seriously ill or dying (74%) and the risk locally (63%). Most liver patients also said that they had found conflicting information from different sources.
Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust, says: “This is understandably a very worrying time for people with liver disease. This year we have heard from many people who have called our nurse-led helpline. They are worried not only about catching the virus but also the knock-on effects of delayed appointments, diagnosis and treatment.
“Since the start of the pandemic, we have been in touch with the Department of Health and Social Care on a regular basis, and equivalent bodies in the devolved nations, to raise these concerns and to ask the questions liver patients need answering.”
The British Liver Trust will be carrying out its own survey of liver patients about their feelings and experiences of treatment during the pandemic. If you’d like to take part, keep an eye on our website and social media channels.