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Specialised Services National Definition Set: 16 Specialised clinical immunology services (all ages)

  • Last modified date:
    8 February 2007

Specialised immunology services incorporate the investigation, clinical assessment, treatment and holistic management of patients with suspected and established primary and humoral immunodeficiencies requiring life-long treatment and monitoring of complex immunotherapies.

  • Primary immunodeficiency (PID) is rare and affects approximately 1 in 30,000 of the population
  • Early diagnosis and regular (every 2-3 weeks) treatment with immunoglobulin therapy enables a normal life-span
  • Human immunoglobulin, harvested from blood donations, is the only possible source of the wide ranging protective antibodies needed to replace those that patients with immune deficiencies are unable to make. This blood product carries the unavoidable infection risks associated with the infusion of human blood
  • Clinical and laboratory services in the UK usually exist together. Clinical services are usually (but not always) daycase/outpatient based
  • The ratio of patients with recurrent infections referred for investigation of immunodeficiency to those who are positively diagnosed is approximately 10:1
  • Home therapy is an important element of this service. Since therapy is lifelong and life-span is normal, there are ever increasing numbers of patients self-infusing at home
  • There is variability in the provision of clinical and laboratory services at present. Immunology centres outside metropolitan areas were previously designated "regional" whereas networks of associated centres exist in large urban conurbations; a regional centre serves a populationof approximately 1-2 million population and a network of centres serves 3-5 million population
  • The ideal management of patients with immunodeficiency involves frequent and careful analysis of numerous immunological tests. The interpretation of these tests requires experience in immunopathology which is an integral part of the training in and practice of Immunology. Thus the investigation and care of such patients should be linked to an established large immunopathology laboratory providing investigations of antibodies, neutrophils, complement and cellular immune function
  • In relation to paediatric immunodeficiency, the National Specialist Commissioning Advisory Group (NSCAG) provides for the management of complex immunodeficiencies requiring bone marrow transplantation at two centres based at Great Ormond Street Hospital and Newcastle General Hospital. These centres provide a specialist service for the less complex immunodeficiency disorders. Several other hospitals have established specialists in paediatric immunology and infectious diseases and care is shared with adult immunologists who eventually take over the care when the patient reaches adulthood. In paediatric tertiary centres where there is no such specialist paediatrician, children are managed primarily by a paediatrician who is either a generalist with an interest in this area or someone who works in a related specialty such as respiratory medicine or haematology/oncology. In such cases the local adult immunologist will provide the expertise in immunodeficiency but the prime carer is a paediatrician

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