Transition

Transfer to adult care occurs at the end of a transition 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. Transition should be a positive process.

The process and time (12–36 months) for transition 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 or Youth Worker. Your child may have joint clinics where members of both the paediatric and adult teams are present.

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.

Paediatrics                                                                                                             Adult Services

Family consultations                                                                                              Individual consultations

A team of different professionals                                                                         Limited team support
and types of support available
such as family support worker, play
worker, psychologist, dietitian and a
specialist nurse

Fewer patients                                                                                                         Large patient numbers

Treatment by a medical team with                                                                     Staff may have less experience of rare childhood liver conditions
specialist knowledge of childhood
liver conditions

Medications is usually free                                                                                   Prescription charges apply

Procedures done in a paediatric unit                                                                 Procedures may be done differently in an adult unit

The experiences and feelings about transition to adult services will be different for everyone. Transition 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, transition has been 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 transition to adult services is different for each child and 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.