Earlier this year, we surveyed 249 liver disease patients and carers in Wales to find out how they felt about their diagnosis and care. We asked patients about their risk factors, diagnosis, the care they received and whether they felt their disease and care were clearly explained.
The results of this survey will form part of our policy work in Wales, working with policymakers at the Senedd to campaign for better care and earlier diagnosis for people with liver disease.
Pamela Healy OBE, Chief Executive of the British Liver Trust, says: “Thank you so much to everyone who took the time to fill out our survey. The results will help us to understand more about your care so that we can campaign more effectively and drive up standards of care for everyone with liver disease in Wales.”
The survey results
We shared our survey with liver disease patients and carers in Wales from February to April 2021.
- 20% of people felt they were diagnosed very late at a point where there were very few or no treatment options
- 70% of patients were referred to a specialist within six months
- 12% were diagnosed in A&E
- 58% did not feel that they were given enough information at diagnosis
- Nearly half of patients were diagnosed after visiting their GP, but only 7% because of tests by their GP due to lifestyle factors
- The majority of patients who completed the survey were diagnosed in later life. Only 18% of respondents were diagnosed before the age of 45.
The survey results mirror those of other studies, which show that often diagnosis of liver disease is at an advanced stage of illness. Patients in Wales are efficiently referred to a secondary care specialist, but policy makers, planners and clinicians must make sure systems are in place to detect liver disease at an earlier stage as the rate of liver disease diagnosed proactively is low.
Patients don’t always understand what has been said to them in appointments and will look for information elsewhere. It’s really important that they’re told where they can find other credible sources of information, such as the British Liver Trust, and that they’re given plenty of opportunities to ask questions about their care.
If you’re a healthcare professional in Wales, please do keep these findings in mind when planning service improvements. You might also like to reproduce these questions in your own patient surveys and use our results as a benchmark.
You can read the full survey results here: 2021 Wales patient survey report