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Barth Syndrome

The Highly Specialised Barth Service is the only centre commissioned by NHS England to offer a multi-disciplinary service to children and young people with Barth Syndrome. The team provides a UK wide service with some European patients. Occupational Therapy for the Barth service is provided on an in-patient, out-patient input and community basis.

The role of the Occupational Therapist working with a child with Barth syndrome includes:

  • Providing education to newly diagnosed patients and their carers.
  • Providing detailed assessments and treatments to promote and maintain functional independence.
  • Assessment and recommendation of environment, equipment and learning strategies for school environments
  • Providing education packages to nurseries, schools and child care providers to maximise inclusion.
  • Providing support /education to other healthcare professionals.

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