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.
Useful Links
http://www.barthsyndrome.org.uk/
