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Osteogenesis Imperfecta



The Highly Specialised Osteogenesis Imperfecta service is one of four specialist centres commissioned by NHS England. It was set up to offer a multi-disciplinary service to children and young people with Osteogenesis Imperfecta. The Bristol Team covers the south-west of England and also provides support to children in South Wales on a case by case basis. Occupational Therapy for the Osteogenesis Imperfecta service is provided on an in-patient, out-patient input and community basis.


The role of the Occupational Therapist working with a child with Osteogenesis Imperfecta includes:

  • Advice on appropriate handling, positioning and managing daily cares (dressing, changing nappies etc) for parents of infants / toddlers to prevent fractures and promote development.
  • Provide detailed assessments and treatments to promote and maintain functional independence.
  • Assessment and recommendation of equipment for school and home environments including wheelchairs
  • Liaison with orthopaedic surgeon regarding planned surgeries, and managing fractures to ensure safe discharge from hospital
  • Provide targeted rehabilitation following fractures.
  • Provide education packages to nurseries, schools and child care providers to maximise inclusion
  • Liaison with professional peer groups nationally to develop national guidelines, audit and research.
  • Provide support /education to other healthcare professionals.

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