Liver disease is a growing concern across the UK, with diagnoses rising at an alarming rate. Scotland in particular has consistently faced some of the worst outcomes for liver disease in Europe. Liver disease mortality rates in Scotland are almost six times higher in the most deprived communities compared to the least affected, highlighting stark health inequalities.
Despite the severity of these statistics, liver disease often goes unnoticed and under-prioritised. Yet, there is hope. While liver disease is serious, it is often preventable with approximately 90% of liver disease cases in adults preventable through lifestyle changes. The main risk factors include excessive alcohol consumption, poor diet, obesity and viral hepatitis. By making small but meaningful lifestyle changes, individuals can significantly reduce their risk of liver disease and even improve their liver health.
We spoke to Lesley Simpson, Outreach Development Officer for Scotland with the British Liver Trust, to find out how she is working to dispel myths, raise awareness and offer support to those living with liver disease.
I’ve been with the British Liver Trust for about 18 months now,” says Lesley. “We’re a small but passionate team. There are only six of us in the outreach team, and I’m the only one covering Scotland. It’s a big area but I also work with some fantastic volunteers to make sure people across the country can get the support they need.”
Lesley acknowledges that one of the big challenges she often encounters is changing the mindset over misunderstandings around what liver disease is.
“People mostly assume that liver disease is only caused by alcohol but it’s far from the full picture. That’s one of the biggest misconceptions we encounter. Before I started working with the British Liver Trust I myself hadn’t realised the full spectrum of liver disease and the associated causes.”
Lesley’s passion for outreach work quickly turned into an appreciation for the liver, and the people impacted by liver conditions. “I’ve become a bit of a liver geek,” she laughed. “The liver is such a fascinating organ, and the people I’ve met are incredible. It’s amazing to see too how with the correct support and information, people can see real positive impact in their lives”.
Dispelling Myths and Raising Awareness
A key focus of the British Liver Trust’s work is education. As Lesley explained, there are over 100 types of liver disease, and a surprising 90% are preventable. “That’s why raising awareness is so important,” she said. “We want to empower people with knowledge about how to protect their liver health and recognise early signs of trouble.”
“In terms of alcohol-related liver disease, you don’t have to be a heavy drinker to develop liver damage. It can happen with habits many consider normal, like drinking a couple of glasses of wine each evening.”
“However, although alcohol is a significant cause of liver disease, around ten percent of liver conditions are caused by genetics or immune disorders,” she explained. “We need to move away from judgmental attitudes and focus on supporting people.”
“We are also seeing the rise of fatty liver disease or to give it it’s full title Metabolic Dysfunction-associated Steatotic Liver Disease (previously non-alcohol related fatty liver disease). Even children are being diagnosed. It’s closely linked to being overweight as well as conditions such as Type 2 diabetes and heart and circulatory disease.”
“Raising awareness is critical. We want people to understand the risk factors- whether alcohol, poor diet, or viral hepatitis – and know that liver disease is often preventable. It’s about giving people the right information to make healthier choices.”
Providing Support: Online and In-Person Groups
One of the British Liver Trust’s most impactful initiatives is its support groups. “We host monthly Zoom meetings that are often condition-specific,” Lesley shared. “These include groups for alcohol-related liver disease, hepatic encephalopathy, and genetic or autoimmune-related conditions. We also have general sessions open to anyone.”
The virtual format allows people from across the UK to connect, but Lesley acknowledges the importance of face-to-face interaction. “In Aberdeen, I’ve started holding in-person groups at the Health Village on Frederick Street,” she explained. “There’s something special about meeting in person – sharing a cup of tea, having a chat, and seeing the physical resources we provide.”
Whether online or in-person, the groups offer a vital lifeline. “People often say, ‘I don’t feel so alone anymore,’” Lesley noted. “Many are newly diagnosed and overwhelmed. Meeting others who have been through similar experiences can be incredibly comforting and reassuring.”
“A liver disease diagnosis often comes as a complete shock. Many are diagnosed late, sometimes in emergency situations, so they’re overwhelmed with new information and uncertain about the future. Meeting others who’ve been through it -especially those who’ve had transplants and are living well – offers a huge comfort,” Lesley explained.
“Our patients are experts by experience,” she said. “They bring so much knowledge to the groups. It’s fantastic to see how they support one another, especially those newly diagnosed. They share practical advice, emotional support and inspire hope.”
One particularly beneficial aspect of the groups is the allowing people to hear from others who have undergone liver transplants. “For those waiting for a transplant, seeing others who are not just surviving but thriving post-transplant can be life-changing,” Lesley said. “It shows them what’s possible.”
“We have fantastic volunteers, including two transplant survivors, who facilitate in-person groups across locations like Edinburgh and Glasgow,” Lesley shares. “They also visit transplant wards, offering comfort to patients and helping me establish new groups. Their involvement is invaluable.”
These volunteers assist with presentations and talks, sharing their experiences to highlight the challenges and triumphs of living with liver disease. This peer-to-peer support creates a sense of community and inspires hope among those affected.
Love Your Liver: A January Campaign
January is a pivotal time for the British Liver Trust’s Love Your Liver campaign, a nationwide effort to encourage liver health. Lesley described it as a chance to help people make small but meaningful lifestyle changes.
“Last month we asked people to take a pledge on our website to cut down on alcohol, sugary snacks, or increase their exercise. For organisations, we provided posters and social media content to share,” she said.
The Love Your Liver roadshow is another key initiative. It includes a mobile screening unit where people can receive a FibroScan, a test that measures liver stiffness. “We’ve seen up to 140 people a day at these events. It’s a great way to identify issues early and direct people to their GP for follow-up.”
Although the campaign took place in January, Lesley stresses that these are things people should be thinking about year round. “Our website is a treasure trove of information,” Lesley said. “We have booklets on every type of liver disease, a glossary of terms, and even lists of questions to ask your doctor.”
The materials are carefully crafted with input from patients. “We ask them, ‘What would have been helpful for you? What do you wish you’d known earlier? That feedback ensures our resources truly meet people’s needs.”
“We also have a section on our website specifically for healthcare professionals, with materials they can download or share.”
Building Local Networks & Getting Involved
Lesley spoke passionately about the importance of partnerships and community connections. “We’ve merged with the Children’s Liver Disease Foundation, which means we can now support people of all ages.
“In Aberdeen, I’d love to see more local partnerships develop – whether with hospitals, third-sector organisations, or workplaces.”
For those interested in joining a support group or getting involved with the British Liver Trust, the process is simple. “There’s no referral needed,” Lesley explained. “You can visit our website, find a group near you, and register. Whether you attend once or regularly, it’s entirely up to you.”
Raising awareness and supporting those with liver disease is a collective effort. Lesley encourages anyone interested to get involved and for those in the Grampian area, she is eager to hear from the community. “I want to know what would be helpful for you,” she said. “Whether it’s attending a group, organising an event, or bringing awareness to your local area, let’s make it happen together.”
Reflecting on her work, Lesley emphasised the transformative power of connection. “It’s a privilege to witness the difference these groups make,” she said. “People arrive feeling overwhelmed and leave feeling hopeful, informed, and supported. That’s what it’s all about.”
“Liver disease is not always a one-way path to decline. We’ve seen people go from decompensated cirrhosis to a healthier state with the right support. Your liver can regenerate, but only to a point. That’s why early intervention is so important.”
“Liver disease affects anyone. Raising awareness, providing support, and giving people hope – that’s what we’re here for.”
For more information or to get involved, visit www.britishlivertrust.org.uk. Or contact Lesley.simpson@britishlivertrust.org.uk
This article originally appeared in the February 2025 edition of ACVO News. Read all past editions of the magazine, and subscribe online at acvo.org.uk/acvo-news
