The British Liver Trust has teamed up with leading liver doctors to create an important new article on the causes and impact of stigma, and how we can tackle it.
The commentary article came out this week in Frontline Gastroenterology which is part of the British Medical Journal (BMJ) group. It appears in a special edition of the journal for this year’s British Association for the Study of the Liver (BASL) annual meeting.
The special edition shares the latest research into many types, stages, and aspects of liver disease. The British Liver Trust was involved in some of this research. Our commentary article highlights the impact stigma can have on all areas of liver disease and how we can tackle it. Its publication will help share our message with specialist doctors, nurses, and researchers at the BASL meeting. It will also reach healthcare professionals treating people with liver disease in gastroenterology departments across the UK.
Why stigma matters
Deaths from many major health conditions have decreased in recent decades. However, deaths from liver disease keep rising at an alarming rate. Many of these deaths can be prevented if people feel comfortable seeking help early and can access the services and support they need.
There are many barriers to this. But we believe stigma is a common factor at every stage. In our 2022 stigma survey, 73% of people said they had experienced stigma. Almost 1 in 3 said it had stopped them from seeking help.
Our new article shows how stigma stops people from seeing their risk. It can prevent someone from having that vital first conversation with their GP and make it harder to attend important appointments. Stigma can also mean services, funding and support are missing or hard to access. It may even be hampering medical research.
The causes of stigma
The stigma around liver disease is complicated. It is based on deep-rooted, yet often conflicting beliefs about things like alcohol, obesity, and drug use. This is made even worse because those with liver disease often face other types of stigma as well. Liver disease is five times more common in the most deprived areas of the UK compared to the wealthiest.
All this leads to something known as “othering”. With those affected being thought of as somehow different from everyone else. Or less of a real, individual person.
Stigma can be tackled
There is growing evidence that stigma can be tackled. We can draw on the work already done with other stigmatised health conditions like HIV and mental health. These have seen big and continued improvements in recent years. So we know that things like awareness campaigns, myth busting, and peer support can all help.
In the article we highlight that one of the most powerful ways to combat stigma is to share the voices of those most affected. Including the many people who have shared their stories with us at The British Liver Trust and the Children’s Liver Disease Foundation.
The stories show the huge challenges faced by those living with liver disease. And they reveal the people at the centre of these struggles. Individuals with a huge range of interests, relationships, and worries about the future.
They can also be stories of hope. With proper care, many people with liver disease enjoy full lives. People like Isobel, who kindly agreed to be featured in the article. She shared her story of stigma. And of the new challenges she has taken on and excelled at since having a transplant.
Research shows that sharing these stories with healthcare professionals can significantly reduce stigma. This impact is both real and lasting. It can be especially powerful for those still in training.
Stigma is not a new issue, but it is one that seems to be starting to get the awareness it needs. This new article will help continue this work by keeping stigma on the agenda at the UK’s leading liver disease meeting, and with healthcare professionals across the country.
We would like to thank our co-authors, Dr Tim Cross and Dr Coral Hollywood. As well as Isobel and all the other patients and families who share their stories.
Read the article –
Impact of stigma on individuals living with liver diseases and why it matters
More British Liver Trust Patient Stories
Children’s Liver Disease Foundation patient and family stories
