Building support networks for children and their families
As well as their physical challenges, we know that children with chronic liver disease can have lower IQs, more mental health problems and higher levels of diagnosed learning disability, with over 30% requiring specialist education support. We believe that with the right medical and therapeutic support, children with liver conditions can overcome these problems and live healthier, happier, more productive lives.
King’s runs the largest liver transplantation programme in Europe and carries out some 50 paediatric transplants per year. Every year around 20 King’s transplant children and their families attend the British Transplant Games; we want to grow this team to enable more children to share the benefits.
Although most children return to a normal life after transplant, they are left with scars, and many experience weight gain and psychological effects. These visible differences from their peers can make transplant children feel very isolated.
Being part of a team provides support long after the event, and creates lifelong memories. With King’s patients coming from across the country, the Transplant Games is an important way to bring families together and encourage children to strive to reach their potential.
Young people who have had a liver transplant or developed liver disease in childhood face specific problems when they reach their mid to late teens. They experience high rates of anxiety and depression, and find it hard to stick with school or hold down a job. They want to be like ‘normal’ young people and can feel pressured into drinking, smoking and taking drugs. This can also lead to neglecting to take their medication and not attending appointments with their therapists, especially if they move away from home. Around 10% of liver transplants in this age group fail, and another transplant is needed.
Our liver transition service works with young people aged 12-25 and employs a Multi-Disciplinary Team of clinicians and healthcare professionals. They work with young patients and their families to develop an individual support plan to negotiate the move from children’s to adult services, while empowering them to establish a healthy, sustainable lifestyle.