Living with a liver condition

Transition

Moving from children’s to adults’ health services

The process of preparing, planning and moving from children’s to adults’ health services is sometimes called transition.

Every young person’s experience will be different, but we’ve brought together some general information, plus the experiences of others who have been through the process.

The information on this page is for:

Young people with a liver condition.
Parents, family, friends, carers, and healthcare professionals.

On this page:

What is transitioning to the adults’ service?

Transfer to adult care occurs at the end of a process that is personalised for each young person. It takes into account all aspects of growth and development. Good communication with the young person, family and adult hepatologist is essential so that anxieties are addressed. Attention should be paid to psychological and social issues to address non-compliance with treatment, which is particularly prevalent in adolescents. The young person must have self-management skills (which should be assessed) and there should be plans for long-term social support before transfer. Transfer to adult care should be a positive process.

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When does moving to the adults’ service happen and who will be involved?

The process and time (12–36 months) varies in each hospital and for each child but discussions may start taking place as early as 12 years old. Your child will see some or all of the following people:

Paediatric Clinical Nurse Specialist
Adult Clinical Nurse Specialist
Consultant Paediatric Hepatologist
Consultant Adult Hepatologist
Key Worker
Child Health Adolescent Worker
Youth Worker

Your child may have joint clinics where members of both the paediatric and adult teams are present.

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Transition is like moving from junior to senior school, it’s terrifying, it’s bigger, you don’t know anyone and they don’t know you…but just like senior school you get used to it.

What are the differences between child and adult services?

You and your child will notice many differences between the children’s hospital/ward and adult services. This table outlines some of the changes that you may need to adjust to or prepare your child for.

Child services

Family consultations
A team of different professionals and types of support available such as family support worker, play worker, psychologist, dietitian and a specialist nurse
Fewer patients
Treatment by a medical team with specialist knowledge of childhood liver conditions
Medication is usually free

Adult services

Individual consultations
Limited team support
Large patient numbers
Staff may have less experience of rare childhood liver conditions
Prescription charges apply
Procedures may be done differently in an adult unit

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What does it mean for me and my family?

The experiences and feelings about moving to adult services will be different for everyone. It can often be talked about in a negative way due to the change and anxieties that it often presents. However, for many young people and families, it is a positive experience of development and independence.

As a parent/guardian you may find it difficult to cope with your reduced role in the medical care of your child. Remember you should still be actively included where and when appropriate. The medical team may feel your child is ready to be seen independently at an earlier age than you feel is appropriate.

The most suitable age for moving to adult services is different for each child. It is important that both medical professionals and parents/guardians appreciate this. Don’t be afraid to question doctors and ask for further clarification or support during these discussions. You should feel you are able to advocate for your child if they want somebody to accompany or support them during an appointment. Your medical team will want to make the change as easy as possible for you and your child to ensure that it is a positive process.

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