Leading liver charity says prevention measures are still ‘woefully inadequate’
New research published today in the British Journal of General Practice reveals that 80% of regional health bodies in England lack an effective pathway to diagnose and manage liver disease, putting thousands of lives at risk.
Although 90% of liver disease is preventable, the UK saw a 27% increase in deaths from liver disease between 2019 and 2023, and the British Liver Trust is calling for urgent change to identify and monitor all those at risk, prevent countless early deaths, and reduce NHS spending across the UK.
Each year in the UK, more than 12,000 people die of liver disease, a silent killer that is often symptomless in the early stages, leading to three-quarters of people being diagnosed with advanced liver disease when it is too late for effective intervention or treatment. If found early, the progression of disease can be halted or reversed.
The study analysed the results from a survey undertaken by the British Liver Trust, that was completed by all the Integrated Care Boards or ICBs (the health bodies responsible for commissioning healthcare in their local region) in England as well as similar bodies in Scotland, Wales and Northern Ireland.
The survey questioned the current provision of a commissioned pathway, the use of recommended diagnostic tests and asked whether there were processes in place to identify and monitor those most at risk.
The research shows:
- Only 27% of Integrated Care Boards (ICBs) had a named individual responsible for liver disease, which is essential for coordinating efforts to diagnose and manage the condition.
- England falls behind both Scotland and Wales, both of which have greater coverage of early detection pathways
- Only half (52%) of England has access to a fibrosis or liver scarring assessment which is vital to assess early stage disease.
An effective early detection pathway includes case finding those most at risk, effectively assessing abnormal liver blood tests in line with national guidance, an assessment for liver fibrosis, and appropriate referral to secondary care.
The new data highlights the urgent need for nationwide improvements to detect liver disease early, which will save NHS money and prevent thousands of avoidable premature deaths. The British Liver Trust is calling for:
- Effective early detection pathways to be implemented in every region, to identify and test anyone at higher risk but who currently don’t have symptoms.
- Assessment for liver fibrosis or scarring assessments for those whose basic blood tests are abnormal and, where appropriate, referral to specialist care. The risk factors for liver disease should be included in routine health checks for conditions such as diabetes and obesity across all community healthcare settings.
Dr Helen Jarvis, Clinical Advisor for the British Liver Trust and lead author of the research, said: “Everyone with liver disease, or at risk of developing it, should have access to essential medical care and advice, no matter where they live in the UK. GPs and primary care professionals are working tirelessly under challenging conditions, but often within a system that limits their ability to properly diagnose and treat liver disease.
“Many GPs also admit to lacking the confidence and knowledge needed to diagnose and manage this condition effectively. This has led to far too many cases being identified too late and at a point when treatment options are limited, resulting in thousands of avoidable deaths. This work points to the urgent need for a central directive to mandate regional health bodies to develop a locally agreed pathway of care for early detection and management of their populations at risk of liver disease, with strategies including liver fibrosis risk assessment as a minimum requirement.”
Pamela Healy OBE, Chief Executive of the British Liver Trust said: “Our research shows that when it comes to the early detection of liver disease, there is a postcode lottery. Although there have been some improvements since the last survey and there are pockets of good practice – this variation is not good enough and widespread preventative measures are woefully inadequate. We need to ensure that there is an effective pathway right across the UK so that everyone has equal access to care.
“The liver is an incredibly resilient organ, but only up to a point. Symptoms of liver disease often only appear once damage has progressed, and the liver is starting to fail. If found early, disease progression can often be halted or sometimes even reversed.”
Professor Stephen Ryder, Consultant Hepatologist, said “If we are to tackle the huge increases in the numbers of people dying from liver disease then prevention and early diagnosis are key. We need joined up effective pathways that link primary care and secondary care together to ensure more people are diagnosed early and receive treatment as soon as possible.”
Sara Harding’s father Stephen tragically died in July 2024 as a result of MASLD (Metabolic dysfunction-associated steatotic liver disease), said: “After years of being told he had an abnormal liver, but that it was nothing to worry about, and with very little support or intervention, my dad passed away on 31st July 2024 from metabolic dysfunction-associated steatotic liver disease (MASLD). He was just 62. The diagnosis four months earlier came completely out of the blue and it was too late to save him.
“This all could have been prevented. If my dad had been put under proper surveillance, we would have known his liver was getting worse, and his story could have had a very different ending. There’s still no pathway for people with fatty liver disease in the North West, but there absolutely should be. Early diagnosis and intervention are crucial.”
The survey was a repeat of a survey first undertaken in 2020 and published in 2021.