The general care of your child with a primary immunodeficiency is covered by a Health Service Circular (HSC 1998/238). It states that all children should be cared for in a suitable paediatric environment and sets out the following basic principles:
- Children are admitted to hospital only if the care they require cannot be as well provided at home, in a day clinic or on a day basis in hospital.
- Children requiring admission to hospital are provided with a high standard of medical, nursing and therapeutic care to facilitate a speedy recovery and minimise complications and mortality.
- Families with children should have easy access to hospital facilities for children without needing to travel significantly further than to other similar amenities.
- Children should be discharged from hospital as soon as socially and clinically appropriate and full support provided for subsequent home or day care.
- That good child healthcare is shared with parents/carers and they are closely involved in the care of their children at all times unless, exceptionally, this is not in the best interests of the child; accommodation is provided for them to remain with their children overnight if they so wish.
- The efficient and effective delivery of services requires children to receive their care as close to home as possible dependent on the phase of their disease. This means your local hospital rather than a specialist centre will deal with less serious health problems, such as a mild infection.
- Services should be organised and delivered through ‘integrated pathways of care’ (National service framework for children, young people and maternity services) (Department of Health, and Department for Education and Skills, London 2004). These pathways can be for a particular procedure or condition and are the standard from which doctors work.
- Accommodation, facilities and staffing must be appropriate to the needs of children and separate from those provided by adults.