The day will come when the care of your child’s primary immunodeficiency transfers from paediatric care to adult services. This is called transition and it usually happens when your child is between 16 and 18 years old. The NHS is currently reviewing the transition process and we will update this information when available. Until then we share with you the current best practice guidelines describing how the transition process should be dealt with.
Enshrined in this good practice is the requirement that the provider has in place arrangements to ensure seamless transfer of care between paediatric and adult services.
Best practice guidelines for providing transitional services for young people as they move from paediatric to adult services have been developed: Transition: getting it right for young people. Improving the transition of young people with long-term conditions from children’s to adult health services (Department of Health Publications, London 2006).
These indicate that transfer arrangements and preferences should be discussed with the child and their family up to 12 months in advance. Shared protocols between child and adult services should be developed, defining the roles and responsibilities of each member of the team involved in your child’s care.