The British Liver Trust, a leading charity for liver health, has released new survey results that highlight the urgent need for better public understanding of childhood liver disease. The survey found that two in three young people affected by the disease experience poor mental health, linked to social isolation and stigma. While medical care for childhood liver conditions has greatly improved, the charity warns that societal attitudes have not kept pace, leaving many families struggling for recognition and support.
According to the survey, completed by young people and parents, 67% of respondents felt that childhood liver disease had a negative impact on mental health, 48% believed it affected their education (rising to 59% among those under 25), and 72% felt that society has little understanding of the illness.
Michelle Wilkins, Head of Children’s and Families Services at the British Liver Trust, stated: “We are fortunate in the UK that once a liver disease is diagnosed, a child will generally receive excellent medical care. However, the rest of society has not yet caught up. Families with children who require regular hospital treatment may receive warning letters from schools about attendance targets. Additionally, there is often an automatic assumption that a young person’s liver disease is related to alcohol when, in fact, the causes of most childhood liver diseases are unknown. This can lead to stigma and discrimination for young patients, in addition to the physical aspects of their condition.”
Wilkins continued, “There are over 100 different types of liver disease that can affect children, all of which are considered rare. However, it is estimated that 400 new cases are diagnosed in the UK each year, and thousands of young people and adults are now living with a childhood liver disease. The lack of understanding surrounding these diseases can leave families feeling isolated and struggling to cope with the stress of having a chronically ill child. Liver disease does not receive the same acceptance as other chronic conditions, yet these young people often face a lifetime of medical care and may require a liver transplant. Greater recognition of this fact would enable them to cope better with the challenges they face in school, work, and social activities.”
Dr Jane Hartley, Consultant Paediatric Hepatologist at Birmingham Women’s and Children’s Hospital, added: “This is an important research that highlights the fact that paediatric liver disease can often go unnoticed by the outside world, while being a serious and potentially life-threatening condition that can impact mental health. Increasing awareness of the burden of care that liver disease has on a child, family, or young person will help establish community acceptance, empower families to seek support, and inform policy-making. Medical care has made great strides in enabling children with liver disease to survive, and now the focus should be on supporting them to lead fulfilling lives without struggling with poor mental health.”
The British Liver Trust’s Children and Families service can provide support and advice to families affected by childhood liver disease. They can be contacted at https://www.childliverdisease.org/talk-to-someone/
Derick is an experienced reporter having held multiple senior roles for large publishers across Europe. Specialist subjects include small business and financial emerging markets.