National specialised commissioning group

From Ganfyd

UK specific: see http://www.specialisedcommissioning.nhs.uk

The National Specialised Commissioning Group (NSCG) and its standing committee the National Commissioning Group (NCG) commissions services in the UK nationally for specified extremely rare conditions or very unusual treatments. In 2010 these included:

• Transplantation
  • Heart and lung
    • Bridge to heart transplant with ventricular assist devices
  • Liver
  • Pancreas
    • Islet
  • Small bowel
  • Stem cell transplant service for juvenile idiopathic arthritis and related connective tissue disorders
• Organ failure:
  • Severe intestinal failure
• Rare immune disease:
  • Amyloidosis
  • Neuromyelitis optica
  • Severe combined immunodeficiency(SCIDs)
  • Paroxysmal nocturnal haemoglobinuria
• Infections:
  • Chronic pulmonary aspergillosis
• Rare tumours:
  • Choriocarcinoma
  • Hydatidiform mole
  • Pseudomyxoma peritonei
  • Ocular in adults
  • Retinoblastoma
  • Primary malignant bone tumours such as osteosarcoma and Ewing’s sarcoma
• Genetic syndromes:
  • Alström syndrome
  • Ataxia telangiectasia
  • Bardet-Biedl syndrome
  • Barth syndrome
  • Congenital hyperinsulinism
  • Cryopyrin associated periodic syndrome
  • Ehlers Danlos syndrome
  • Epidermolysis bullosa
  • Inherited neuromuscular disorders
  • Lysosomal storage disorders
  • McArdle’s disease
  • Mitochondrial diseases (not all)
  • neurofibromatosis type 1
  • Neurofibromatosis type 2|NHS specialised commissioning
  • Primary ciliary dyskinesia
  • Xeroderma pigmentosum
• Anatomical challenges
  • Complex tracheal disease including long segment tracheal stenosis
  • Vein of Galen malformation
  • Bladder exstrophy
  • Craniofacial
  • Congenital malformation of the female genital tract
• Paediatric conditions:
  • Autoimmune paediatric gut syndromes
  • Gender identity development
  • Forensic mental health service for children
  • Liver disease
  • Mental health service for D/deaf children and adolescents
  • Paediatric pulmonary hypertension
• Psychiatric
  • Severe obsessive compulsive disorder
  • Body dysmorphic disorder
• Therapies:
  • Encapsulating sclerosing peritonitis surgery
  • Extra corporeal membrane oxygenation (ECMO)
  • Osteo-odonto-keratoprosthesis (OOKP) for corneal blindness
  • Proton beam therapy
  • Pulmonary thromboendarterectomy
• Diagnosis:
• Ophthalmic pathology