If you have a child with a primary immunodeficiency (PID) they may, unfortunately, have to spend some time in hospital. While they are there, the health provider has certain responsibilities when caring for your child.
Your child’s care will be given through paediatric-specialised services but it will involve your GP (primary care), medical specialists in secondary care delivered in hospitals or clinics, and tertiary care with consultants who specialise in the treatment of people with PIDs.
Sometimes your child may be referred to the super-specialised centres that have high expertise in making uncommon diagnoses or in certain aspects of treatment, such as bone marrow transplantation or gene therapy. This is referred to as quaternary care.
The standard of care your child should receive is set out in law and also by standards developed by health professionals and national organisations. Here we set out the main areas involved.