Earlier this year, we asked people affected by a liver condition across the UK to share their experiences of diagnosis, care and treatment. Thousands of responses provided us with invaluable insights into the patient journey, highlighting both positive experiences and areas where challenges and discrepancies in care persist.
Thank you to everyone who took the time to respond to the survey and share your experiences. The results will provide us a clearer understanding of where improvements are needed. This information is essential as we work closely with clinicians to address these challenges and advocate for better care for everyone with liver disease.
While we will be releasing a full report with a detailed analysis of the survey results in due course, this blog highlights some of the initial findings. These early insights will help guide our discussions with policymakers, politicians, and the media, enabling us to raise awareness of liver disease and continue to campaign for enhanced support for patients.
About the survey respondents
2396 people, who represented all age groups, were diagnosed with a variety of liver conditions.
The largest proportion of respondents were diagnosed with MASLD/NAFLD – 31% (n=702). This was followed by 17.4% (n=390) with primary biliary cholangitis. 16.7% (n=375) were diagnosed with an alcohol-related liver condition and 16.7% (n=374) with autoimmune hepatitis.
Diagnosis
27% of patients were diagnosed due to symptoms they experienced, but over a quarter were only identified through blood tests for other conditions. Alarmingly, just 1 in 20 discovered their liver condition due to lifestyle-related tests, underscoring the importance of proactive screening and awareness, especially given that approximately 90% of adult liver disease could be prevented through lifestyle changes.
When asked how their diagnosis journey first began, many patients reported feeling unsupported, with one stating, “I was diagnosed very
abruptly and with no support at all. I had to chase to get a referral for a scan to confirm after I was told ‘you probably have liver disease.”
However, there are also more positive experiences, like this one: “I told the GP that I was constantly tired and he organised for blood tests which identified PBC” showing improved follow-up care in some cases. These insights highlight the need for more consistent patient care and diagnostic pathways.”
The survey also revealed concerning trends: 27% of patients were diagnosed due to symptoms they experienced, but over a quarter were only identified through blood tests for other conditions. Alarmingly, just 1 in 20 discovered their liver condition due to lifestyle-related tests, underscoring the importance of proactive screening and awareness, especially given that 90% of liver disease can be prevented through lifestyle changes.
Symptoms
55% of respondents experienced symptoms prior to their diagnosis.
The main symptoms experienced were:
• Extreme tiredness/fatigue 74%
• Tummy pain/swelling 51%
• Itching 46%
• Nausea 40%
• Jaundice 32%
Post Diagnosis Support
After diagnosis, there is a great variation in the information and support given to individuals. Whilst 35% (n=703) found that they received the right amount of information, 41% felt that they were not given enough information and a further 19% received no information at all.
“I felt stigmatised by the medical professionals I saw”
When respondents were asked how much they agreed:
– 37% felt that their diagnosis was not properly explained
– 30% said that they did not receive their diagnosis in a sensitive manner
– 22% felt stigmatised by the medical professionals that they saw
“I felt that due to my condition being alcohol related I was treated differently and felt huge stigma”
Satisfaction scores across geographical locations
When asked how satisfied they have been with their medical care since first being diagnosed with a liver condition, patients across the UK reported an average satisfaction score of 55, indicating that overall satisfaction with care is moderate.
Positive feedback from some patients demonstrates what optimal care can look like:
“Excellent consultant support when needed and consistency – seeing the same doctor every appointment.”
“From the time my condition worsened, I was able to access prompt assessment and care leading to a transplant.”
These experiences highlight that timely referrals and consistent care from the same healthcare professionals can lead to greater satisfaction.
The North West recorded the lowest satisfaction, while the neighbouring North East had the highest average score of 65, where interestingly, the region also reported the highest proportion of referral times within one month.
This survey highlights some key issues that remain far too prevalent – there are still too many patients who feel unsupported, uninformed, and stigmatised by healthcare professionals. The findings also stress the importance of timely diagnosis and referral for better patient management, which remains a priority for our ongoing campaigns and lobbying efforts.
Next year, we will be sharing a full report of the survey. The survey findings were presented at a UK national clinician conference in October and we hope to publish the full results in a scientific journal and at the EASL congress. We are working closely with clinicians and using the results to support our advocacy efforts.
As the leading UK charity dedicated to providing support and information for everyone affected by a liver condition, the results of the survey are a stark reminder of the vital need for all of the services we offer, from our nurse-led helpline, to our website and support groups.
Find out more about the information and support we offer here: Information and Support – British Liver Trust
